# Male 25 suffering from wet anus, obstructed defecation++



## QuietDesperation

Hi all...

I've been lurking here for a few months and have read many of your stories, some are very similar to my own.

6-7 months ago I started having trouble with my bowel movements. I simply wouldn't be able to go in the mornings. It seemed to get better throughout the day. Because of this I started straining, and about 4 months ago more trouble began. I seemed to be getting incomplete evacuations constantly. Bowel movements became random and frequent 4-8 times a day, versus the usual 1 in the morning previously. Stools seemed to come out in fragmented pieces, no consistency. Often when straining I would feel a "ball" sort of thing coming out of my anus. Things just didn't seem normal.

Here are some symptoms I'm suffering from:

- Obstructed defecation, it feels like something is blocking, this is worst in the mornings where I am usually unable to go at all.

- Incomplete evacuation. When I do manage to go, I never feel like I fully empty. Sometimes I will get the urge to go again only 10 mins after previous visit.

- Almost constant mucous/wetness in my anus for most of the day, usually getting slightly better in the evenings. No color, if I wipe myself with paper I can't really see it. I have to wear protection or it will soak through my underpants and eventually pants.

- The constant moisture/mucous comes with an odor. I don't think anyone else really notices, but I'm not sure.

- I'm really not able to let out air like I used to, sometimes it's just hard to tell if I need to have a bowel movement or let out air. I still can recognize when it's air but it's difficult to let out and often result in a very incomplete *puff*. Just doesn't seem normal at all.

- When the urge to go arrives (which happens more suddenly than before) I also get what seems to be massive sweating from my butt cheeks area. I'll be completely soaked in minutes if I don't go.

- The "ball" I felt earlier seemed to have vanished or maybe not coming out as far anymore.

- Often I'll have a weird feeling of pressure in my anus, a bearing down feeling which makes it very uncomfortable to sit on hard surfaces.

- I also have a warm sensation back there often.

- Lower back pain, but luckily not a constant thing

Seemingly out of the blue, about 2 months ago I developed urination issues as well. That includes symptoms such as: frequency, feeling the need to go again after 15-30 mins, I usually don't last more than 2 hours before I have to go and pee again. The beam is weaker and I don't know if my bladder fully empties. Stomach crampings/pain seemed to be another symptom related to this. I've had a few dripples, nothing major, but still an annoyance and added worry.

My doctor said she suspects I may have pelvic floor dysfunction, especially because I'm having issues with both bowel movements and urination.

I've been obsessivly reading up on this and I now suspect I have pelvic floor dysfunction combined with an Internal rectal intussusception or mucosal prolaps. Has anyone else been diagnosed with this and treated? I read the story over at curezone ( http://curezone.org/forums/fm.asp?i=2007440) about another guy suffering from similar issues, unfortunaly he never came back to report on the surgery. I wonder what happened.

What have I done?

- Enema, this has helped me to clear my bowels. I try not to use it too often since I don't know the long term effect of doing this. After doing enema I'll usually get a better day than when I don't.

- Laxatives. I don't use them now, it seemed like they don't work. Even if my stool is softer I still have incomplete evacuations. I may have to experiment more with this though.

- Pelvic floor exercises. Yupp. I've been doing these for almost 1 month now. They say it's going to take 2-3 months minimum before you feel any difference. The latest week I had less odor and feeling of mucous leaking. Now it seems to be mostly sweat (although i'm not sure that it's really sweat, but it doesn't smell). A few days I barely got wet at all. I've had less bearing down feeling in my anus as well. Not much else seemed to have improved though, are these improvments a coincidence or related to my exercises? I don't know. But I'll continue doing them for now, it can't hurt.

Where am I at?

So far I've done coloscopy & rectoscopy. Nothing was found here (unsurprisingly), though I was hopeful that the rectoscopy would show something at the time, all they found was that I had a small hemorrhoid, nothing really. The real test will be in mid-may when I'll be doing the x-ray defecography test. I'm feeling pretty confident this will finally give some answers. I'll also be going for consulation with an urologist sometime in april, I know most of you guys don't suffer from those issues, but I thought I'll mention it anyway, maybe somebody does.


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## Plin

I felt the same way and thought suicide was the answer at one point because I felt like #### and anything i did even doctors i visited did not get that. Seeing a shrink I thought did nothing because I needed them to help my stomach issues not my anxiety. To me the stomach issues cause the anxiety not the other way around. So I finally tried some things and now I feel better but the anxiety is still something to work on but atleast I can sit down and try to relax the anxiety without my stomach issues making things worst. Now i am back to work and accepted back in the reserves after being sent to a medical board. Here is what I did:

1. NO smoking!!!

2. Rapid body cleanse by renew life ( vitamin world or amazon)

3. Lillie of the desert aloe vera juice after and before eating to soothe stomach

4. Paragone by renew life ( even if you do not have parasites something in this product makes you feel normal) Continue takiing the pills after the cleanser twice a day

5. Ultimate Flora Critical Colon 80 billion by renew life

6. Continue after cleanser taking aloe vera to soothe stomach and Paragone vitamins that was part of the cleanser and Ultimate Flora pills

So far two people i have suggested this to are feeling better and dont feel like death everyday. So please try and let me know so I can continue to spread the word


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## thickthighs1

Plin is right a probiotic..its essential.my gastro recommended milk of magnesia for my constipation,but i use enemas instead(he doesnt know that) sure he would kill me if he found out


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## horizonzero

I'm exactly in the same boat as you ... every single symptom you've described ... I'm still patiently waiting on a defecography x-ray but the odor is ruining my life, NHS waiting times in the U.K. here are scandalous ... Just because you don't have cancer means you are set to the side and have to wait months for any procedure/consultation.


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## westr

Plin said:


> I felt the same way and thought suicide was the answer at one point because I felt like #### and anything i did even doctors i visited did not get that. Seeing a shrink I thought did nothing because I needed them to help my stomach issues not my anxiety. To me the stomach issues cause the anxiety not the other way around. So I finally tried some things and now I feel better but the anxiety is still something to work on but atleast I can sit down and try to relax the anxiety without my stomach issues making things worst. Now i am back to work and accepted back in the reserves after being sent to a medical board. Here is what I did:
> 
> 1. NO smoking!!!
> 
> 2. Rapid body cleanse by renew life ( vitamin world or amazon)
> 
> 3. Lillie of the desert aloe vera juice after and before eating to soothe stomach
> 
> 4. Paragone by renew life ( even if you do not have parasites something in this product makes you feel normal) Continue takiing the pills after the cleanser twice a day
> 
> 5. Ultimate Flora Critical Colon 80 billion by renew life
> 
> 6. Continue after cleanser taking aloe vera to soothe stomach and Paragone vitamins that was part of the cleanser and Ultimate Flora pills
> 
> So far two people i have suggested this to are feeling better and dont feel like death everyday. So please try and let me know so I can continue to spread the word


tell us more about renew life, i heard they kill puppies and have salesmen on internet forums.


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## QuietDesperation

horizonzero said:


> I'm exactly in the same boat as you ... every single symptom you've described ... I'm still patiently waiting on a defecography x-ray but the odor is ruining my life, NHS waiting times in the U.K. here are scandalous ... Just because you don't have cancer means you are set to the side and have to wait months for any procedure/consultation.


Yeah that sucks. I'm also waiting since January, but at least May is getting closer... I'm worried about the waiting times after the test as well. Can they even help me where I live? It seems there are not a whole lot of options here. I've been reading up on private solutions and I found one in the U.K I may look into later. Maybe somebody has had experience with it, it's http://www.oxfordpelvicfloor.co.uk/ - I've heard Mr. Dixon is good http://www.spirehealthcare.com/bristol/our-facilities-treatments-and-consultants/our-consultants/mr-anthony-dixon/


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## horizonzero

QuietDesperation said:


> Yeah that sucks. I'm also waiting since January, but at least May is getting closer... I'm worried about the waiting times after the test as well. Can they even help me where I live? It seems there are not a whole lot of options here. I've been reading up on private solutions and I found one in the U.K I may look into later. Maybe somebody has had experience with it, it's http://www.oxfordpelvicfloor.co.uk/ - I've heard Mr. Dixon is good http://www.spirehealthcare.com/bristol/our-facilities-treatments-and-consultants/our-consultants/mr-anthony-dixon/


I'm actually going to look in to that oxford place thanks alot for that


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## QuietDesperation

horizonzero: keep us updated

*Update*

Today I had another rectoscopy with another surgeon, this one was scheduled by my doctor due to me complaining of long waiting time, the first one I had done privately. This test was more thorough than the first one and the surgeon also asked me to bear down while having a finger placed in my rectum. While doing so, he discovered that I do indeed have a prolapse.

He told me that there could be internal rectum prolapse, mucosal prolapse, enterocele (I thought this only applied to women, will have to research more). In addition there could be some pelvic floor dysfunction. He said that a mucosal prolapse on it's own wouldn't cause my symptoms and that the mucus from anus could indicate internal rectum prolapse (which he also said is a full-thickness external prolapse in development). Basically what I have suspected has now been confirmed by a surgeon, but he can't tell exactly what kind of prolapse I have. He told me I absolutely have to go for the x-ray defecography test.

All in all I'm glad I went there today, it confirmed some of my suspicions and will contribute with further diagnose since they won't be able to simply reject me as crazy or having psychological issues.


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## aguyinpain2

Yo dudes!

I am in exactly the same boat as you guys.

/Almost constant mucous/wetness in my anus for most of the day. When the urge to go arrives (which happens more suddenly than before) I also get what seems to be massive sweating from my butt cheeks area. I'll be completely soaked in minutes if I don't go. Incomplete evacuation/.

It's totally weird and social humiliating.( I don't have to tell you).

I am trying symprove probiotics right now. And still have an appointment with a surgeon. I'll keep you posted.

Please do the same! We can help each other here

Good luck guys!(btw I am 24)


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## aguyinpain2

PS:

I've got the urine problem to. When need to sleep I go out 5 times before I can sleep. Everytime it feels I can't totally evacuate my bladder. (always thought it was stress or something) Maybe it could be related since you got it to!


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## westr

aguyinpain2 said:


> Yo dudes!
> 
> I am in exactly the same boat as you guys.
> 
> /Almost constant mucous/wetness in my anus for most of the day. When the urge to go arrives (which happens more suddenly than before) I also get what seems to be massive sweating from my butt cheeks area. I'll be completely soaked in minutes if I don't go. Incomplete evacuation/.
> 
> It's totally weird and social humiliating.( I don't have to tell you).
> 
> I am trying symprove probiotics right now. And still have an appointment with a surgeon. I'll keep you posted.
> 
> Please do the same! We can help each other here
> 
> Good luck guys!(btw I am 24)


do let us know how symprove goes, very interested in that.


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## aguyinpain2

Yo westr,

The symprove does improve my bowel movements somewhat. But still I have the wetness occuring before a bowel movement and afterwards. So even with a consistent stool the problem persists. So I have to get a defeceography I guess. Don't know what else it can be. My surgeon already meniotned a small prolapse once so it makes sense.

greatings


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## aguyinpain2

westr said:


> do let us know how symprove goes, very interested in that.


Yo westr,

The symprove does improve my bowel movements somewhat. But still I have the wetness occuring before a bowel movement and afterwards. So even with a consistent stool the problem persists. So I have to get a defeceography I guess. Don't know what else it can be. My surgeon already meniotned a small prolapse once so it makes sense.

greatings


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## keep_on_fighting

Unfortunately IBS can lead to colorectal issues like these.. I have the same exact symptoms you do now. Sometimes I use suppositories in the morning if I am stubborn. Seems to help. If I sit a bit too long, a prolapse occurs, gotta manually, err, fix it. Been doing the exercises as well.. Been able to counter the prolapse a bit by doing the exercises, but still problematic.. Close quarters with others is terrible to go through, but I don't care as much nowadays.. If I sit on a plane, it's gotta be aisle seat and close to the restroom.. I bring Tucks pads with me at all times now..

Please update us with your condition and treatments.


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## QuietDesperation

Since my last post I have been to the urologist twice and today I finally had the x-ray defecography. Here is my update.

*Update: last month (urologist)*

The first appointment with urologist was back in early April, I had a quick test of my urin beam, then ultrasound of bladder, then after that I had cystoscopy.
I was barely able to pee, but it had only been 1 hour since last visit, the ultrasound showed that my bladder was empty, so thats good. The cystoscopy showed some slight bladder wall thickening.
The doctor prescribed me some Solifenacin and scheduled me for another visit in one month. He said he believe I have "overactive bladder" and that the pills will increase the volume capacity before urge.

I noticed slight improvement in bed (as in, feeling less urge when waking up in the morning versus before), other than that still very strong urge. I had another visit in early May and we did the beam test and ultrasound again. After that he told me to double my doses of Solifenacin and come back in a month. If still no improvement he will schedule me for an interstitial cystitis test, basically filling up bladder under anesthesia or something.

Since the beginning of April I have been upping my laxative doses (30mg per day) and (to the best of my abilities) quit straining on the toilet. In addition I use enema every 3 days or so to empty. About a week after I began doing this, the wetness went down a lot, and then I had several weeks with almost no wetness. It only recently returned briefly for about 3-4 days together with a more soft/watery and fragmented stool. All in all, things seems to have improved a little. It seems to be mostly due to stool consistency. I believe the mucus may have stopped leaking, or a lot less anyways.

*Update: Today (x-ray defecography)*

So I finally had the long awaited x-ray defecography. Let me say this: it's not a fun test, but I'm very glad I had it done. I had to meet 2 hours before the test and was given a contrast to drink (barium sulfate for suspension). The taste was awful and almost made me vomit. After waiting for a couple of hours I was brought into a room where I had to undress and was given a towel sheet to cover myself up. After that they filled my rectum with thick barium paste, I had to lie down on stomach, sideways, on my back etc. Apparently I had to lay down in all these positions to make the barium paste spread out all around the colon. Once that was done I was told to sit on the "toilet" and strain or hold depending on what they commanded. They were not looking directly at me (even though they could) but at a screen while this was going on. While I was straining and they were looking at the screen, I could hear the main doctor mumble to himself and co-workers something like "here we have a full thickness prolapse". So that was it. He told me I have a full thickness internal prolapse. My doctor shall be given more details in about a week once they have studied the images further.

Guess operation is next.


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## JMH91

Defecography- yes not fun. Full thickness prolapse (internal I assume since before this no detected abnormality) ... this is good as doctors have found a cause. Once cause is found there is better chance that it can be corrected (better than not knowing what the cause is). Yes maybe surgery like STARR, but not always surgery taken for internal prolapse I think.

Good luck with your future treatment


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## westr

thats good news dude, no rectocele there? let us know what treatment you get. i was about to give up on my hospital but my gp told me there is a letter floating about asking for my defecography.


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## horizonzero

westr said:


> thats good news dude, no rectocele there? let us know what treatment you get. i was about to give up on my hospital but my gp told me there is a letter floating about asking for my defecography.


I have mine next week after a 4 month wait, the sheer thought of this being moved along is fantastic but still the system is corrupt with bureaucracy, if you don't have the words cancer written next to your name the NHS don't want to know you


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## westr

i just got an appointment tonight for a consultancy next month, ive been waiting for months just for the results from the ultrasound. its a joke. let us know how you get on.


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## QuietDesperation

JMH91 said:


> Defecography- yes not fun. Full thickness prolapse (internal I assume since before this no detected abnormality) ... this is good as doctors have found a cause. Once cause is found there is better chance that it can be corrected (better than not knowing what the cause is). Yes maybe surgery like STARR, but not always surgery taken for internal prolapse I think.
> 
> Good luck with your future treatment


Yep, full thickness internal prolapse is what they told me. Also from what I have understood, they can do STARR for mucosal prolapse, but full thickness prolapse is treated with Laparoscopic Ventral Mesh Rectopexy.



westr said:


> thats good news dude, no rectocele there? let us know what treatment you get. i was about to give up on my hospital but my gp told me there is a letter floating about asking for my defecography.


They will study the images/video and send answer within one week. At least they couldn't identify any rectolocele right there and then, only the prolapse. Fingers crossed it's only a prolapse that can be fixed.

Keep us updated on your progress.


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## QuietDesperation

I asked my doctor to give me a copy of the report received regarding the defecography. Figured I would publish it here. It was written in my native language, but I've done my best to translate it to english.

*The anorectal angle is almost 70° under squeezing/tightening and increases to just below 100° during rest. No leakage, no descends. Early during defecation an invagination appears right above the anorectal transition, and it turns into a full thickness internal prolapse where the leading tip goes deep into the anal canal.
When the patient strains vigorously the leading tip of the full thickness prolapse comes all the way down to the anal opening. However the prolapse does not protude out into an external posistion. There are no signs of enterocele. Neither is there any mucosal prolapse of degree worthy of mention.

Quick development of full thickness internal prolapse where the leading tip goes into deep position in the anal canal and leading tip appears in the outer opening under straining. There is no accompanying enterocele.*

I'm not sure if the anorectal angle I have is good or bad. But not having enterocele, no leakage (not sure why it says so? did they check if I were leaking out the barrium while relaxed perhaps?), no descend, it doesn't sound so bad. It seems I only have a full thickness internal prolapse. Not having any descends probably means I'm a candidate for STARR as well. But a full thickness prolapse probably better treated with LVMR. Although I have also read some people get more constipated if they treat internal prolapse with LVMR... going to be interesting to find out.

I checked out the official waiting time for prolapses and it seems the waiting line is up to 6 months to get checked out and 1 year for operation. If I really have to wait 1.5 years i don't know what I will do, let's hope that's not the case.

*edit: * while doing research I stumbled upon a picture of the defecography room I was at: http://i.imgur.com/Wj90bEO.jpg


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## JMH91

Try this for help to understand meanings of this test

https://en.wikipedia.org/wiki/Defecography#Diagnostic_yield_and_interpretation

My x-ray looked nothing like that ... I think they just improvised something


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## QuietDesperation

JMH91 said:


> Try this for help to understand meanings of this test
> 
> https://en.wikipedia.org/wiki/Defecography#Diagnostic_yield_and_interpretation
> 
> My x-ray looked nothing like that ... I think they just improvised something


That's perfect! Thanks. It explains the anorectal angle, and so it seems what I have is about normal. As for descent my results doesn't state if that's when straining or not, but if normal perineal descent is less than 4cm I guess having none is good.

Are you saying that those who did your test must have improvised something? why? what did it look like?


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## yzz

You may be suffering from a rectail prolapse that's inhibiting you from holding back your stool, causing it to apply pressure to the sphincter and create a wet sensation. Try doing weighted squats and lungs to strengthen your core and the muscles surrounding the sphincter. Kegels also go without saying.


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## JMH91

Are the pelvic muscles included in the Core muscles? I thought it was the abdominals that are called core?


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## yzz

JMH91 said:


> Are the pelvic muscles included in the Core muscles? I thought it was the abdominals that are called core?


They are included, see http://en.wikipedia.org/wiki/Core_(anatomy)


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## horizonzero

QuietDesperation said:


> I asked my doctor to give me a copy of the report received regarding the defecography. Figured I would publish it here. It was written in my native language, but I've done my best to translate it to english.
> 
> *The anorectal angle is almost 70° under squeezing/tightening and increases to just below 100° during rest. No leakage, no descends. Early during defecation an invagination appears right above the anorectal transition, and it turns into a full thickness internal prolapse where the leading tip goes deep into the anal canal.
> When the patient strains vigorously the leading tip of the full thickness prolapse comes all the way down to the anal opening. However the prolapse does not protude out into an external posistion. There are no signs of enterocele. Neither is there any mucosal prolapse of degree worthy of mention.
> 
> Quick development of full thickness internal prolapse where the leading tip goes into deep position in the anal canal and leading tip appears in the outer opening under straining. There is no accompanying enterocele.*
> 
> I'm not sure if the anorectal angle I have is good or bad. But not having enterocele, no leakage (not sure why it says so? did they check if I were leaking out the barrium while relaxed perhaps?), no descend, it doesn't sound so bad. It seems I only have a full thickness internal prolapse. Not having any descends probably means I'm a candidate for STARR as well. But a full thickness prolapse probably better treated with LVMR. Although I have also read some people get more constipated if they treat internal prolapse with LVMR... going to be interesting to find out.
> 
> I checked out the official waiting time for prolapses and it seems the waiting line is up to 6 months to get checked out and 1 year for operation. If I really have to wait 1.5 years i don't know what I will do, let's hope that's not the case.
> 
> *edit: * while doing research I stumbled upon a picture of the defecography room I was at: http://i.imgur.com/Wj90bEO.jpg


I got the exact same test as you done but wasn't told any of these details


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## QuietDesperation

*Update October (internal prolapse):*

In the beginning of this month I went to visit surgeon for consultation. I was told to come prepared emptied with enema. When I got there I was asked a bunch of question and then told I was going to have a quick (only a few minutes) rectoscopy. While the rectoscopy was going on, the surgeon said she was going to use some rubber band. I didn't get time to react (it took like 3 seconds), thus I was essentially involuntary given the rubber band treatment.

After the rectoscopy I was told that rubber bands will make the mucosal fall off and make it easier to get stool out and also remove some of the feeling of having to bear down. I was very surprised by this and immediatly felt it was the wrong treatment. I have never heard of any use of rubber band for anything other than hemorrhoids and mucosal/anal prolapse. I asked her about treatment using laparoscopic rectopexy and she made it very clear that they only perform that on patients with external prolapse (except in very rare cases), furthermore, she quoted the result of some surgeries performed some 15-20 years ago on another hospital she worked at, where 9 out of 15 patient who had surgery for internal prolapse ended up getting the bag. "It doesn't work", she said. "Nobody gets better from that surgery". I then quoted studies made in england where 82% are improved from such surgery, but she laughed it off and said "that must be some special circumstances".

Soon after I left and felt I was about to faint so I had to sit down. The rubber band treatment was extremely painful and I found myself unable to urinate for the next 4 hours or so. And it took several days for things to get back to "normal". It's been 10 days now and I can't say I feel much better, I was asked to come back in 3 months, and that it would take 6 weeks to notice improvement.

Needless to say, I'm pretty disappointed that it turned out this way. I actually asked if it was possible to see another surgeon the next time for a second opinion and that was fine. I'll have to see how I feel during the next months and judge based on that.

*edit:* minutes after writing this I had a bowel movement and believe it or not, a rubber band came out.

*edit 2:* I forgot to mention, I was also told to use bulking agents from now, something called "Vi-Siblin" (http://i.imgur.com/bKeHvl1.jpg) .. so now I have to take 1 bag of that each night and it tastes awful. I can only get it down if mixing with some yogurt.

*edit 3:* the wetness I suffered from earlier has mostly vanished. It started getting less and less in May-July, and now for the last couple of months I have almost nothing unless I feel the need to have a bowel movement or is doing some physical activity. It seems now that it's mostly just sweat. It's a big relief not having the constant wetness.

*Update urination:*

I went to the urologist in early October and was told that during the bladder dilation I had a while back they did a biopsy and discovered I have chronic inflammation in the bladder. I was diagnosed with the horrible disease "interstitial cystitis" of which I was told there is no treatment (however this is not entirely true from what I have gathered in my own research).


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## WeAllHaveStories

a


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## sportsGeek

Wow... All I can say is.. I thank you for sharing your story and sentiments..

I am 30 years old.. And think I am going through the same thing right now.. The only thing is.. I don't think I have a problem with urinating as I believe my probiotics/Garlic is causing me to pee more than usual..

I've taken probiotics (Kyolic Garlic, Chlorofresh, and Fungal Defense) and fruit/veggies..nothing has cured me.. I went almost 8 months on a 2 smoothie a day diet (lunch/breakfast: Lemongrass, Spinach, Bananas, Strawberries, Pineapples, Kyolic Garlic) and then regular healthy food at night..

However, the exact events:

1) of having 5-6 bowel movements a day. 
2) no full evacuation,where bits and pieces of bowel come out.
3) smell / odor from other people who are not close to me
4) ability to smell myself.

I have all of the above.. Thank you for sharing.. I am going to get a 3rd consultation as soon as possible.


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## QuietDesperation

*UPDATE:*

A few days ago I called up a private health service and spoke with a gastro surgeon. He has performed thousands of laparoscopic surgeries, but couldn't tell me how many he had done for prolapse though it wasn't a whole lot, that said, he seemed knowledable on the subject and could answer most of my questions. He told me he had a co-worker who was doing more of these operations, they usually work in team, 2 at once.

He said the only way to treat internal prolapse is an operation, anything else is treating symptoms, and that may not work. He said 70-80% have success with the operation. He proposed two possible surgeries:

*A.* Rectopexy where the recum is lifted and secured with a sling / mesh.

*B.* Resection rectopexy where a part of the colon and rectum is removed then stapled together (using a stapler through the anus).

He said A. would be the least risky operation, and that we may want to go with that, and if it doesn't work, move on to option B.

So now I'm here, having spoken to two surgeons. The first one said that if I have the operation I will never get better and probably end up with an ostomy. The second said if I don't have the surgery I will probably never get better and likely get worse as the prolapse progresses into an external one (with 8 bowel movements a day he said, it may only be a question of time).

All my own research indicates operation, but I'm scared, there doesn't seem to be that many performing a good volume of these surgeries, at least in my country. But travelling to another country is not that simple either, with complications etc (in fact I tried contacting bristol, but they wouldn't even offer a phone consultation)

As for the private operation in my country. It will cost me about ~12-13k USD.

Currently waiting to speak with him again after he has done some more research and spoke with his colleague.



sportsGeek said:


> Wow... All I can say is.. I thank you for sharing your story and sentiments..
> 
> I am 30 years old.. And think I am going through the same thing right now.. The only thing is.. I don't think I have a problem with urinating as I believe my probiotics/Garlic is causing me to pee more than usual..
> 
> I've taken probiotics (Kyolic Garlic, Chlorofresh, and Fungal Defense) and fruit/veggies..nothing has cured me.. I went almost 8 months on a 2 smoothie a day diet (lunch/breakfast: Lemongrass, Spinach, Bananas, Strawberries, Pineapples, Kyolic Garlic) and then regular healthy food at night..
> 
> However, the exact events:
> 
> 1) of having 5-6 bowel movements a day.
> 2) no full evacuation,where bits and pieces of bowel come out.
> 3) smell / odor from other people who are not close to me
> 4) ability to smell myself.
> 
> I have all of the above.. Thank you for sharing.. I am going to get a 3rd consultation as soon as possible.


I'm having 4-6 bowel movements per day now, but I'm lucky and have lost both the smell and the wetness (except when I'm feeling the urge). I honestly don't know why, but I suspect the prolapse may have retracted a bit as a result of my efforts (trying to strain less, use more enema, kegel/pelvic floor exercise, laxatives).

Thanks for your feedback, hopefully we can all find a cure in the end, stay in touch.


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## QuietDesperation

pengu said:


> So the smell is gone? What's the problem then


Yes it is. The problem for me currently is obstructed defecation / incomplete evacuation. I get the urge to go many times every day, and if I ignore it I'll start sweating profoundly. Letting out air is difficult and I have to use enema a few times per week to clear the bowels because the obstruction prevents me from emptying it all on it's own.

I think it's only a question of time before the prolapse will become external and destroy my sphincters. I'd like to prevent that day from arriving.


----------



## Reideran

WeAllHaveStories said:


> not sure if related, but this problem started happening immediately after i began doing squats in the gym.


Lifting heavy can apparently lead to weak pelvic floor.

Im not saying you shouldnt lift but make sure you use proper form and do pelvic floor exercises.



> How the pelvic floor muscles may be weakened
> 
> In men, the pelvic floor muscles may be weakened as a result of:
> 
> 
> Surgery on the prostate gland
> Constipation which is long-standing
> Chest problems with a chronic cough
> Being overweight
> Being generally unfit
> A medical condition affecting the nervous system
> Lifting heavy loads at work or home
> 
> Weak pelvic floor muscles can result in urine leakage on effort of exertion, or on sneezing or coughing.


google it


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## rewinj

I had a rectopexy & sigmoid resection for a full-thickness external prolapse in August. I'm currently worse-off in terms of obstructed defecation & am regretting rushing into the surgery. Worried about an ostomy in my future. Still only 3 months out of surgery though, and 1.5 weeks from dilating a stupid stricture they found at the anastamosis site (like 10% of people get that with a colorectal resection). That was supposed to be the kicker on my obstruction, but once again I'm only feeling worse.

Take your time, spend some money if you need to get another opinion or two. Mine originally developed because I was so underweight/weak and was dealing with a bunch of other digestive craziness, and I believe that the surgery only led to a greater weakening of my pelvic floor. This may not be anything like yourself.

A very tough situation, for sure. Life without surgery seemed unliveable, but life after bowel surgery will almost always be difficult. Don't expect to ever be back to 100%, but value everything you have. Any of us could get hit by a car, cancer, etc. @ any second. This is tough, but suck everything you can outta life, every day, & don't let these difficult problems drain away all your focus!

Sorry I've been bad about updating the board about my situation, but I still feel very much in limbo...


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## QuietDesperation

Hi guys! It's time for a new update.

I spoke with a surgeon in the UK who is expert in pelvic floor. He suggested that I do the ventral mesh rectopexy. 75% of patiens who has this procedure will improve, out of those who improve, 50% will recover completely (become asymptomatic) while the rest will improve partially. For those who recover only partially, or those who do not get any improvement at all, there is another procedure that can be performed from below, through the anus. It's Delorme. This will give you another 60-70% chance of improvement.

I asked about resection, that's something they almost never do. Back in the day (or inexperienced surgeons today) used a technique called posterior rectopexy. That basically means the rectum is disconnected from behind. The problem with that is that there are a lot of nerves behind the rectum, if you mess around and cut in that area you are of very high risk of nerve damage which may result in both bladder and sexual dysfunction. Ventral (also called anterior) rectopexy means you disconnect the rectum from in front. In other words, this is a nerve sparing procedure. While surgery for internal prolapse may have a bit of a sketchy history of poor surgerical results, most of these have been performed with the older technique.

His team had performed more than 1000 prolapse operations (ventral mesh rectopexy) and more than 100 delorme. I was told that the risk of getting worse is very small and that generally the worst thing that can happen is you don't feel any improvements. He couldn't remember last time they had a major complilcation, and none of his patient had ever gotten impotence after surgery.

He could promise me, that rubber band ligation would not cure me. But before I could have surgery, there needs to be performed some more tests, those are anorectal physiology and ultrasound, I will also be doing a transist study.

Good news is I'm getting all those tests done before christmas, in addition, I'm going for a consultation with another surgeon in Norway who works in the same hospital as the previous one I was at. It's good to get another opinion on this.

The UK surgeon didn't think I would get better without surgery based on the protogram/defecography report, he said it could get worse, but it's unlikely to become an external prolapse.

I'll have to think about this, but it's tempting to go ahead, it's not like I have a lot of other options.


----------



## QuietDesperation

pengu said:


> Good luck with the surgery. How did you get cured of the smell?


It just went away. I'm not sure of the exact reason, all I have done is to: strain less, use more enema, did kegel/pelvic floor exercises for months and take laxatives. The bearing down sensation went away also.



rewinj said:


> I had a rectopexy & sigmoid resection for a full-thickness external prolapse in August. I'm currently worse-off in terms of obstructed defecation & am regretting rushing into the surgery. Worried about an ostomy in my future. Still only 3 months out of surgery though, and 1.5 weeks from dilating a stupid stricture they found at the anastamosis site (like 10% of people get that with a colorectal resection). That was supposed to be the kicker on my obstruction, but once again I'm only feeling worse.
> 
> Take your time, spend some money if you need to get another opinion or two. Mine originally developed because I was so underweight/weak and was dealing with a bunch of other digestive craziness, and I believe that the surgery only led to a greater weakening of my pelvic floor. This may not be anything like yourself.
> 
> A very tough situation, for sure. Life without surgery seemed unliveable, but life after bowel surgery will almost always be difficult. Don't expect to ever be back to 100%, but value everything you have. Any of us could get hit by a car, cancer, etc. @ any second. This is tough, but suck everything you can outta life, every day, & don't let these difficult problems drain away all your focus!
> 
> Sorry I've been bad about updating the board about my situation, but I still feel very much in limbo...


Sorry to hear your results. Truth is, external prolapse is hard to treat completely. I'd imagine resection helping with the obstructed defecation, perhaps you will need a complimentary surgery like delorme or STARR. At least it may be worth a shot before going for the ostomy.

The experience of the surgeon is also key. Do you know what it was? like how many operations they performe each year for prolapse? I think I read somewhere that 10 should be minimum.

It would be great if you could tell us how your symptoms are now versus before (incontinence, gas, urgency, pain etc), just to get a general idea on what improved and what didn't. I'm also curious how painful the surgery and recovery is.


----------



## westr

pengu ever done biofeedback? i had it done today, they shoved this thing up my ass and told me to clench, then to relax. they showed me that as i supposedly relax then strain, i actually tense up, then they showed me a technique in order to fully relax. they told me to push my stomach out which is the opposite of what i usually do. then i was told to tense first, then release, then push stomach out and think about relaxing at the same time, and i saw the resting pressure go down from 60 to 30 after about 10 minutes of doing it, it was amazing.


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## rewinj

QuietDesperation said:


> It just went away. I'm not sure of the exact reason, all I have done is to: strain less, use more enema, did kegel/pelvic floor exercises for months and take laxatives. The bearing down sensation went away also.
> 
> Sorry to hear your results. Truth is, external prolapse is hard to treat completely. I'd imagine resection helping with the obstructed defecation, perhaps you will need a complimentary surgery like delorme or STARR. At least it may be worth a shot before going for the ostomy.
> 
> The experience of the surgeon is also key. Do you know what it was? like how many operations they performe each year for prolapse? I think I read somewhere that 10 should be minimum.
> 
> It would be great if you could tell us how your symptoms are now versus before (incontinence, gas, urgency, pain etc), just to get a general idea on what improved and what didn't. I'm also curious how painful the surgery and recovery is.


Yeah, the resection was supposed to help with the obstructed defecation. I wasn't sure of my surgeon's experience, but he talked as if he had performed and regularly performs this operation.

I had no incontinence before the surgery, just nonstop urgency & obstructed defecation, along with copious amounts of gas, bloating, nausea, etc. Stools either too loose or too hard. Once I left work and learned to "work with" my prolapse, I found I was able to eliminate pretty fully each day, but the digestive craziness (which I reckon wasn't much connected to the prolapse itself) persisted.

All the gas/bloating/nausea is the same post-surgery (I'm worried I have/had SIBO, and that this is underlying most of my problems... maybe even leading to the prolapse's development), and now the partially obstructed defecation has turned into *extremely* obstructed defecation.

It's possible I still have a stricture where they resected the bowel, but I'm more suspicious that I have other pelvic floor issues besides the prolapse (something like a sigmoidocele, a continue intussusception, or descending perineum syndrome) that have actually been worsened because of surgery, etc. Currently looking into private options in the states. Anyone have any great pelvic-floor-support-for-men centres? I'm tired of doctors looking at me like I'm an alien.

The actual recover from the surgery was challenging as hell, but honestly was pretty forgettable considering how much the bowel symptoms still effect me. I remember lying down on a cold steel table in a concrete room, closing my eyes, then waking up (a couple hours later?) with an anaesthetic pump in my hand that I simply could not stop pressing. Insane insane gas & pain in the day(s) directly following the procedure (they pump you up with gas for the laparascopic surgery), but all the meds at the hospital kept me rolling in quite a dreamlike state for most of my time at the hospital. Got out after 7 days. Couldn't walk or do much for the first couple weeks without a lot of pain. A few small walks each day was very helpful in getting things to move inside though. Washing the scars & changing dressing each day was annoying, but relatively easy. Got an infection in my wound & had to suffer through a couple rounds of antibiotics, but it healed up nicely. Don't expect to have great digestion for some time afterwards... the gas and nausea and stuff for the few weeks following the surgery was next-level, but it returned to my normal levels pretty quick. You may end up dealing with post-surgical SIBO type issues, but that's pretty typical for gut surgery it seems. Hopefully you'll have someone around at home to help out for the first couple weeks at least.


----------



## QuietDesperation

Thanks for sharing your experience rewinj. Hopefully you can find a real expert to help you with these issues.



pengu said:


> Interesting. What were the exercises u did? and for the laxatives i assume u used miralax?


Nope, it's just called "laxative" in my native language... not sure if this is available in other countries, you can look at it here. As for exercises, I was doing them two times per day, in the morning I did 10 repetitions where I would tighten the pelvic floor muscles for about 8-10 seconds, then I did the same at night. Also did sometimes tighten them during the day when sitting, and I always tighten my pelvic floor before I cough or sneeze, I still do that.


----------



## rewinj

No worries. Will try to check in as I learn more. Still really suspicious that I have a stricture at the resection site, but I'm pretty sure I've really weakened the pelvic floor in other ways while I've been trying to deal with that stricture post-op. Doesn't seem that the prolapse has recurred, but I'm getting the following symptoms:

-major incomplete evacuation & obstructed defecation that is significantly worse (though quite different) than before surgery; it feels both as if stool will not enter the rectum, then not exit the rectum once some finally does

-the major bulging down of something around the anus/rectum as I try and go; occasionally this will cause major pain, but it usually just feels blocked off despite the major urge to go and feeling of a large amount of stool

-if i can avoid that bulge, I can eliminate very thin stool (with much patience/difficulty); i have never seen a stool larger than pencil-thickness post-op (the stricture?); this elimination usually requires me raising one or both legs very high, almost assuming a pseudo-squat position

-80% of the time the stool comes out flattened like shoelaces, sometimes flat as tape

-stuff almost always gets trapped in the rectum; i'm wiping for 15 minutes to clean up the tiniest little stool

-needing to assume the knee-chest position on the floor in order to do *something* to my pelvic area that allows gas to move/pass

-major urinary urgency/incontinence

Most of these symptoms were ones that I had experienced before the surgery (to quite lesser extents), and were being blamed on the prolapse, but now I see that a rectal prolapse can just be one piece of a set of complex pelvic floor issues. Make sure you're confident that your doctors have a decent sense of the full extent of what is going on down there. I wish I had had some more investigations prior to the operation.

I'm most suspicious of continuing to suffer from perineal descent (descending perineum syndrome) or an intussusception that hasn't gone away. It seems like both of these would best be dealt with conservatively (laxatives/diet, pelvic floor exercises, enemas) rather than operatively, so as long as I avoid prolapsing again I should be able to avoid another surgery(??).

Sorry to rant, and everyone be aware that I'm still waiting for more tests & diagnoses... but the waiting game (and the doctor game) is so frustrating. Trying to figure out as much as I can to avoid further damage, but not putting too much stock in any of my self-diagnoses.

Currently doing similar pelvic floor exercises to you, QuietDesperation. How did you tolerate that laxative? Was it really bad for gas/bloating? We call it "lactulose" in English, and it is one drug that my suregon/gastro have not recommended for me because of the side effects: gas gas gas. Their main recommendations for me, both pre- and post-op, have been Miralax (Polyethelene Glycol) and/or Milk of Magnesia (Magnesium Hydroxide), which may help moderately but really cause me A LOT of discomfort, and may actually be doing more harm than good. Looking for alternatives...


----------



## QuietDesperation

rewinj said:


> No worries. Will try to check in as I learn more. Still really suspicious that I have a stricture at the resection site, but I'm pretty sure I've really weakened the pelvic floor in other ways while I've been trying to deal with that stricture post-op. Doesn't seem that the prolapse has recurred, but I'm getting the following symptoms:
> 
> -major incomplete evacuation & obstructed defecation that is significantly worse (though quite different) than before surgery; it feels both as if stool will not enter the rectum, then not exit the rectum once some finally does
> 
> -the major bulging down of something around the anus/rectum as I try and go; occasionally this will cause major pain, but it usually just feels blocked off despite the major urge to go and feeling of a large amount of stool
> 
> -if i can avoid that bulge, I can eliminate very thin stool (with much patience/difficulty); i have never seen a stool larger than pencil-thickness post-op (the stricture?); this elimination usually requires me raising one or both legs very high, almost assuming a pseudo-squat position
> 
> -80% of the time the stool comes out flattened like shoelaces, sometimes flat as tape
> 
> -stuff almost always gets trapped in the rectum; i'm wiping for 15 minutes to clean up the tiniest little stool
> 
> -needing to assume the knee-chest position on the floor in order to do *something* to my pelvic area that allows gas to move/pass
> 
> -major urinary urgency/incontinence
> 
> Most of these symptoms were ones that I had experienced before the surgery, and were blaming on the prolapse, but now I see that a prolapse can just be one piece of the pelvic floor issues. Make sure you're confident that your doctors have a decent sense of the full extent of what is going on down there. I wish I had had some more investigations prior to the operation.
> 
> I'm most suspicious of continuing to suffer from perineal descent (descending perineum syndrome) or an intussusception that hasn't gone away. It seems like both of these would best be dealt with conservatively (laxatives/diet, pelvic floor exercises, enemas) rather than operatively, so as long as I avoid prolapsing again I should be able to avoid another surgery(??).
> 
> Sorry to rant, and everyone be aware that I'm still waiting for more tests & diagnoses... but the waiting game (and the doctor game) is so frustrating. Trying to figure out as much as I can to avoid further damage, but not putting too much stock in any of my self-diagnoses.


Those are horrible symptoms. What happens if you use enema, does that help? Have you been diagnosed with descending perineum or is that something you think you have? I believe both that and intussusception should be visible on a defecography, perhaps you need to do that again. If you have descending perineum you cannot do STARR operation for intussusception.

Regarding the urinary urgency, what is that like? I'm suffering really bad from interstitial cystitis, this is for me much worse than the prolapse. I am in constant pain for most of the day with high urge.

I can understand your frustration, you're in a situation where the bag is starting to seem attractive. Waiting is the worst. Some people think public healthcare is free, it's not. When you need help you have to wait for months, some even years. The price of public healthcare is agony. Once you have paid the price of a life in pain and misery, then you may finally get help. It's been a year for me since I started seeking help, I'm still here waiting for tests and consultations.



> Currently doing similar pelvic floor exercises to you, QuietDesperation. How did you tolerate that laxative? Was it really bad for gas/bloating? We call it "lactulose" in English, and it is one drug that my suregon/gastro have not recommended for me because of the side effects: gas gas gas. Their main recommendations for me, both pre- and post-op, have been Miralax (Polyethelene Glycol) and/or Milk of Magnesia (Magnesium Hydroxide), which may help moderately but really cause me A LOT of discomfort. Looking for alternatives...


Interesting. I wasn't aware of that actually, and I have been suffering from a lot of gas. I'm quitting lactulose today because of the transit test (can't be on laxatives while doing that test), I ate the first capsule today and have to take them for the next 5 days before finally doing x-ray on day 7 to see where the capsules are at. Will give me about a week to see if I have less gas. My surgeon recommended bulking agent (vi-siblin) so I'm taking that right now, perhaps I won't really need lactulose, I'll have to wait and see.

Keep us updated.


----------



## rewinj

Great thoughts... thanks so much. I'm looking forward to hearing how things play out for you as well. I'll be thinking of ya! I got an extra dash of hope this afternoon... to be honest it's kind of what I've been looking for for 3 years.

Today I met with an internist who specializes in men with eating disorders. *Finally* somebody understands my issues, as almost everything I've been going through apparently happens to men who get too skinny. He will offer a lot of guidance for me in terms of where to go next, and he is eager to send my GP, gastroenterologist, physiotherapist, and surgeon lots of notes and advice on how best to proceed with my case. He's quite optimistic that with his help I'll be able to recover very well. I'll be paying him privately, but it's a small cost at this stage.

I'm still clearly dealing with some colorectal problems that will need to be focused on by the surgeon (and yes, another defecography & repeat CT on the colon would be essential first steps). I'm definitely in a very complicated situation, but I'm finally seeing some light out of it!


----------



## westr

i started of with a referral but once they see you they make the appointment with you directly. its actually pretty pointless them sticking this electrode up there, all if measures is your sphincter tightness. its the way they make you relax and breathe thats important, ill be back in january to have the same electrode shoved up there but hopefully it will show a greater ability to relax. when she said relac literally nothing happened, she said with some people the electrode shoots out to the other side of the room, so theyve definitely hit on something.

2 days after i did it all i had the most clear day ive ever had at work, i was also able to go number 2 at work which ive normally been too up tight to do, ive also found that theres more to push on. this morning was pretty bad, things felt very loose but i was on the drink and sitting on hard chairs all night, plus i had 3 movements that day.


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## westr

its done something, cant really tell if its helped with the smell that much yet.


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## QuietDesperation

QuietDesperation said:


> QuietDesperation. How did you tolerate that laxative? Was it really bad for gas/bloating? We call it "lactulose" in English, and it is one drug that my suregon/gastro have not recommended for me because of the side effects: gas gas gas. Their main recommendations for me, both pre- and post-op, have been Miralax (Polyethelene Glycol) and/or Milk of Magnesia (Magnesium Hydroxide), which may help moderately but really cause me A LOT of discomfort. Looking for alternatives...


To confirm hypothesis: I have been off the laxatives for 2 weeks now, I have very little gas now compared to when I was using it. A great improvement, and so far it seems I don't need the laxatives, the bulking agents is probably doing a good job. I'm feeling better, and I'm actually happy I got the rubber band treatment now, even though it didn't change much, I feel like I have to strain less and have less sensention of needing a bowel movement. Not a big improvement, but hey, I'm happy with any improvements I can get.

Still think I'm going to need surgery. Done with transist test, next up is anorectal physiology and chat with another colorectal surgeon, all before christmas. Will be interesting to find out. January I'll finally talk with experts on interstitial cystitis, hopefully I can get started treatment for that asap, it's such a pain and bothers me more than this prolapse.


----------



## rewinj

Good to hear reducing the laxative helped.

I also spent months in gas pain from the surgeon's laxative advice, until I realized it was just about the same going without it.

After my last meeting with my surgeon, I'm feeling a bit better about things. I have had a stricture since my surgery, and this is something that would make anyone's bowel-life a nightmare. They happen in about 10% of colorectal surgeries, I guess? I really do wish they would have acknowledged it earlier in my recovery though. Although my surgeon attempted to dilate it once a month ago, I had no relief, but it often takes 2 or 3 dilations to fix. Then, if all else fails, more surgery .

I'm confident about the next dilation though, and hope that with the stricture healed my bowels will finally be getting to place that is better than before surgery.

Best of luck as you continue seeking out opinions and advice. I'd definitely consider trying to deal with the IC a bit before you sign on for the bowel surgery, to see how that alone may improve your quality of life. See what the specialists say. Keep positive, and keep us updated!


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## rewinj

pengu said:


> I have all these symptoms. It seems like a natural reaction to my inability to relax while defecating. Sometimes I can poop just fine and my poop comes out normal shaped.


Yeah, my weird stool is definitely a combination of pelvic floor issues & an anastomotic recto-sigmoid stricture. (... 3 years ago that sentence would have been complete gibberish to me ... oh how I wish I could return to those days!  ) Very confusing & leaving me unsure how to best cope, as the advice for each is completely contradictory (high fibre vs. no fibre, basically). I'm sticking to low-residue as the stricture is more frightening, and I definitely do not want to get obstructed trying to re-train a pelvic floor that might not need it..


----------



## yellow11

pengu said:


> Could you explain this? Do you mean your IBS symptoms or your leaky gas/FBO symptoms
> 
> I too am very skinny


Same here. It's interesting I've never had any problem with my appetite but just can't put on weight. My arms are like matchsticks. Not that it's worth that much but my theory is that I can't digest my food properly, espeically high protein foods, so I don't put on weight or have much muscles really. The undigested food then rots in our guts, giving rise to bad bacteria and stuff all of which combine to cause us to smell bad. Would be very interested as well to hear is that what Rewinj's doctor thinks is happening or something totally different.


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## rewinj

pengu said:


> Could you explain this? Do you mean your IBS symptoms or your leaky gas/FBO symptoms
> 
> I too am very skinny


Both. Not that it's a cause per se, but it definitely makes you more likely to develop issues.

Being underweight can predispose you to both bacterial overgrowth (gas!) and pelvic floor issues (weak!), because your internal processes rely on musculature as well. If your arms are like matchsticks, you can bet that your supportive muscles inside (e.g. holding up & moving your pelvic floor) and your smooth muscles (e.g what allows the bowel to move & function properly, avoiding the buildup of bacteria or "undigested waste") are weak as well.

Of course, malabsorption & digestive disturbances can lead to continued weight loss or at least challenges gaining, so it is unfortunately a vicious cycle. Whatever you do, don't starve yourself! Maintaining/building strength inside is vital.


----------



## QuietDesperation

*Update:* Transist test came back fine. New surgeon today. I had some balloon test in the rectum. Didn't get any ultrasound, the surgeon refused to do it. He said the rectum seemed to function fine, but I may be having a bit of a tight pelvic. Then he told me men don't usually get prolapse when they are this young, he thinks the cause is some issue with coordination durning defecation. He has scheduled me for biofeedback. It will take 6-8 weeks and I'll start early next year he said. According to him this could help a lot. I have my doubts, but I'll give it a shot. My IC treatment is coming up in january next year so may be good to wait with surgery anyways. He didn't really say I'll be able to have surgery if biofeedback fails, he said surgery on young men often has very poor results, he accused mr. Dixon of lying about 82% improvement in men, but didn't look at the study/research at all, I'm uncertain if he knows who mr. Dixon is. While he didn't seem to be very fond of surgery, he didn't violently oppose it like the previous surgeon. Since 2010-2011 they had only performed around 40 prolapse operations (ventral mesh). While there are many patients who'd like an operation, he said that they prioritize cancer patients.


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## pigeon79

Hi everyone,

I'm feeling quite overwhelmed by fecal body odor recently. I've had it on and off for two years now and it seems to be chipping away at my sense of self, making me a shell of a man. I'm 31 now and feel like an adolescent.

My current symptoms include the following:
Incomplete evacuation (literally watery stool gets stuck right inside my rectum and I have to dig it out with wipes)
It feels like my rectum is not closed after a bowel movement
Smell that varies in intensity
Inability to hold gas (although gas has decreased almost to nothing due to the SCD diet)

I thought the smell was from SIBO (I had a positive test(methane type) last spring and have been on a very small amount of antibiotic each night since then. My doc put me on miralax each night to help with constipation. It all helped a lot but fbo has come back pretty badly the last couple months. I thought it was cause of ketosis but even when I cheat and have a bunch of carbs the smell is still so strong if I have incomplete evacuation. My doc is changing me to citrucel instead of miralax to see if that helps. He's also sending me to a surgeon to do tests to see about a prolapse, something to do with pelvic floor or other things so I might be in the same boat as some of you.

I definitely have a weakened sphincter and it feels like it's tightening all day for no reason.

The hardest part is that I literally know no one who can understand what I'm going through in real life. My girlfriend says she can't smell it but other people have made a bunch of comments. my girlfriend sees how it's wrecking me and I wish I could quit my job and stay home all day. I feel guilty because my girlfriend wants to do all these things I can't do and I feel like I'm holding her back from life. We can't go to the movies and even a museum gets me paranoid. I really am shriveling up due to embarrassment and extreme levels of anxiety.

I know my story isn't exactly helpful medical advice or anything but I need to put it out there because my thoughts are turning to death. If anyone is interested in being pen pals that would be awesome.


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## QuietDesperation

Hi all. Time for a new update.

In late January I met with an ostomy nurse, she gave me a biofeedback device which I tested when there. She noticed that I seemed tense, the muscles were a bit too tight. I was told the avg under relaxation is 7 and mine was 12-14. So I was told to work on relaxation, and since I have interstitial cystitis (IC) I shouldn't be doing the normal pelvic floor exercises (where you are trying to hold very tight). Now it's 3rd of March and I got down 25 days worth of biofeedback, skipped a few days, it was hard to keep up every single day tbh.

As for my thoughts on doing biofeedback, well, it was useful to understand how my muscle function better. I think I'm now more able to defecate correctly than before, and I have seen my relaxation value go down, usually 8-10 and sometimes even less. I feel like the last few months I had some improvements as far as letting out stool is concerned, but the improvements are minor, and it varies everyday what it's like. I don't think biofeedback has made much difference at the end of the day, but I don't regret doing it, if only for the educational purpose that may serve me well later (e.g after an operation).

I was also given a rectal irrigation kit (water enema). I've been using that a few times per week. It works great, and lets me (i think) completely empty. After using it I can go 2-3 days without needing a bowel movement. That being said, I don't enjoy the process of irrigation, and the other day I got some rectal spasm that I suspect was due to rectal irrigation.

I guess what I'm getting at is... things could be better. And I can't see myself doing rectal irrigation for the rest of my life. I don't like the idea of that at all. Nor do I like the idea of having incomplete evacuations constantly.

I'm very fearful of surgery not only because it can fail, but because I have interstitial cystitis and is afraid that it can worsen the condition (if surgery gets in contact with bladder somehow). This is a tough decision, and I don't know yet when I'll need to make it.

Delays as usual... my IC treatment hasn't gotten started yet. But it will tomorrow, then I'm having my first bladder instillation with Uracyst. My IC has gotten better last few months too, I believe it's due to a better and more IC friendly diet.

I'd like to end this update by stating that the way I feel now versus how I felt around 1 year ago is indescribable. My life is so much better. No constant sweat/mucus, no odor, no "bearing down" feeling, little lower back pain, less urgency for urination, less pain in bladder, less or few spasms, more successful evacuations / getting more out each time, easier letting out gas. So yes, things are still far from normal, I still suffer every day, but compared to a year ago I'm in heaven. I hope to continue to improve like this for the next year, doing everything I can to get better. For anyone out there who's going through a tough time, hold on.


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## QuietDesperation

pigeon79 said:


> Hi everyone,
> 
> I'm feeling quite overwhelmed by fecal body odor recently. I've had it on and off for two years now and it seems to be chipping away at my sense of self, making me a shell of a man. I'm 31 now and feel like an adolescent.
> 
> My current symptoms include the following:
> Incomplete evacuation (literally watery stool gets stuck right inside my rectum and I have to dig it out with wipes)
> It feels like my rectum is not closed after a bowel movement
> Smell that varies in intensity
> Inability to hold gas (although gas has decreased almost to nothing due to the SCD diet)
> 
> I thought the smell was from SIBO (I had a positive test(methane type) last spring and have been on a very small amount of antibiotic each night since then. My doc put me on miralax each night to help with constipation. It all helped a lot but fbo has come back pretty badly the last couple months. I thought it was cause of ketosis but even when I cheat and have a bunch of carbs the smell is still so strong if I have incomplete evacuation. My doc is changing me to citrucel instead of miralax to see if that helps. He's also sending me to a surgeon to do tests to see about a prolapse, something to do with pelvic floor or other things so I might be in the same boat as some of you.
> 
> I definitely have a weakened sphincter and it feels like it's tightening all day for no reason.
> 
> The hardest part is that I literally know no one who can understand what I'm going through in real life. My girlfriend says she can't smell it but other people have made a bunch of comments. my girlfriend sees how it's wrecking me and I wish I could quit my job and stay home all day. I feel guilty because my girlfriend wants to do all these things I can't do and I feel like I'm holding her back from life. We can't go to the movies and even a museum gets me paranoid. I really am shriveling up due to embarrassment and extreme levels of anxiety.
> 
> I know my story isn't exactly helpful medical advice or anything but I need to put it out there because my thoughts are turning to death. If anyone is interested in being pen pals that would be awesome.


I'd look into rectal irrigation if I were you. See: http://www.coloplast.pt/products/urology/peristeen/productdetails/

Why? Because if you can empty your rectum completely you'll also get rid of the watery stool and incomplete evacuations. You may do this once a day or once every 2 days instead of going to the toilet constantly and not to mention worrying about needing a bowel movement when out. If you did rectal irrigation in the morning you won't need a bowel movement that day and can more easily do things then. I'd say there is a good chance it will help with smell too if t here is no stool in rectum.

Hopefully you find out what's wrong exactly, you need to get to the cause of your issue before any treatment can begin, but may as well use whatever tools available in the meantime. And rectal irrigation, I find, is much better to empty with than a normal enema (also more healthy according to nurse).


----------



## horizonzero

westr said:


> pengu ever done biofeedback? i had it done today, they shoved this thing up my ass and told me to clench, then to relax. they showed me that as i supposedly relax then strain, i actually tense up, then they showed me a technique in order to fully relax. they told me to push my stomach out which is the opposite of what i usually do. then i was told to tense first, then release, then push stomach out and think about relaxing at the same time, and i saw the resting pressure go down from 60 to 30 after about 10 minutes of doing it, it was amazing.


That's exactly what I did


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## QuietDesperation

horizonzero said:


> That's exactly what I did


Same here aswell


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## QuietDesperation

I have finally scheduled surgery.

Should be getting it before June.... Laparoscopic Ventral Mesh Rectopexy. The odds of success are about 75%. I can't think about what I'll do if it fails right now, I have to believe it will succeed.


----------



## serenity now

Hi everyone especially @QuietDesparation it has been lifesaving to hear your stories because I am suffering from the same thing and looking for answers. I am 34 and female so have additional pelvic issues which I will be posting about in a separate post but I just wanted to say thanks for sharing your stories and QuietD best of luck on your surgery!!


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## serenity now

@QuietDesperation I am rooting for you! And if you want to read my story/novel, it's here....http://www.ibsgroup.org/forums/topic/233714-female-34-obstructed-defecation-leaky-gasodor-pelvic-dysfunction/


----------



## QuietDesperation

Hello all! Reporting back post-op. I go into a bit of details because I also like to use this topic as a diary to remember the events better. If you don't care about that and wants to know how I'm feeling now you can skip to the last part "Current status".

It's been about a week since I had my LVMR with Lindsey in Oxford. Before the surgery Lindsey told me there's a 25% chance in males that LVMR won't be possible due to the shape of their pelvis. Some males have a more typical female pelvis, which is easier to do an operation with. He asked me if I would consent to him doing a STARR operation if I turned out to be one of those 25% who can't have LVMR. I was not prepared for this question at the time, but based on my research on STARR it comes with risks that I (incontinence, urgency, a lot of pain), given my current situation, was not willing to take. Lindsey did not seem concerned, and told me of a case recently where STARR was a big success. I still felt uncomfortable so I refused that and decided to take the chance on surgery anyways. I'd have to pay even if the LVMR couldn't be completed then, but I had already traveled to Oxford and booked hotel for 8 days. I was ready, and quitting now just seemed like a hopeless situation. For anyone wondering about the costs; the operation was less than 5k GBP, the tests I did (anorectal physiology & ultrasound) was about 1k GBP.

Luckily, my pelvis was fine, and the LVMR was completed as planned. Lindsey was very pleased with the result. He told me I had a relatively high take-off, grade 4-5 internal rectal prolapse, almost external. The prolapse was anteriorly for the most part, which was great news. As an "added bonus", it turns out I had an inflammation of the appendix, so I got an appendectomy at the same time. Only a few weeks back I had been lying in bed with very high pain and symptoms of appendictitis, however I was unaware of the connection and did not seek medical treatment at the time. After a few days those pains slowly vanished after I performed rectal irrigation and I moved on, figuring it was related to the prolapse and bloating or something. It all makes sense now.

After I woke up from the surgery I had 4 incisions on my tummy. I had a catheter in, was given painkillers and had a morphine pump connected, allowing me to self inject morphine when I felt it was needed. I stayed in bed until the day after. There was pain, but nothing I couldn't manage, I did give myself several morphine injections to get me through the night when I woke up.

The next morning catheter was taken out and I got to try and stand up. At the time I couldn't, I became very dizzy and even vomited. But tried again later and got up, soon enough I was walking around the hospital and left by the evening after taking a shower. So far I was very pleased with everything, consultants, nurses, everyone had been fantastic. It was a good experience and I felt very much taken care of.

The recovery the next week involved trying to move and take it slow. Moving is very important apparently, and I felt that because walking made me feel better quick. I think it all wasn't as bad as I feared pain wise.

*Current Status:* I was told it takes 2-3 months before we will really know if the surgery works and I'm just beginning to reduce my movicol intake (been on 3 per day so far, which resulted in diarrhea), so it's hard to judge based on the bowel movements I've had if it works. The current situation I'm in (1 week post-op) really shouldn't matter and I must give it time, but I'll write how I feel anyways for reference.

If I do have a strong urge to go, I don't have to strain any and it comes out. The current issue is that once it has left the rectum, if it's not a complete bowel movement and some small pieces are left near the bottom it's like I can't really push that last part out. Which is pretty annoying. I've been assuming it's because of pain in my stomach in the incisions, but today I had less pain and the same feeling. Don't get me wrong, I'm not straining hard, I have been told not to sit and strain so I'm careful and can't really judge how this is going to work out this soon.

That said, I feel that the prolapse is gone, or at least significantly reduced. I have not so far suffered the hot/wet ass thing that I had issues with before while urgency/walking/activities/high temparature etc. That is very nice indeed. With the prolapse, sometimes I would have a strong urge, but inability to have a bowel movement. This has not happened yet. Everything seems fine related to continence, no issues at all, even with diarrhea. Bearing down sensation is definitivly gone. I do not feel any pain in my rectum. I was used to being unable to go first thing in the morning, this has changed. I can go and it comes right out!

There is some pain of course, I have 4 cuts in my tummy. But it's getting better surprisingly fast, and I've been able to sleep on my right side without pain for the last few nights. Walking is no issue, but I'm not allowed to lift much for 6 weeks nor drive for 2. I got some spasms around the bladder, penis/urethra area (could be related to my IC condition too, I don't know, but I long suspected I have some kind of pelvic floor dysfunction going on). There is a little pain when gas is passing through the colon, I can feel it. But overral things are looking pretty good and I'm hopeful this will work well in the end.

Any questions? Shoot!

If this surgery ends up fixing me, I promise to be back and let you guys know.


----------



## rewinj

Sounds like you've had a very successful surgery experience thus far. Way to go!! I wish you the best of luck in your continued recovery. Be sure to keep us updated, regardless of how things turn out!


----------



## QuietDesperation

rewinj said:


> Sounds like you've had a very successful surgery experience thus far. Way to go!! I wish you the best of luck in your continued recovery. Be sure to keep us updated, regardless of how things turn out!


Thank you, I will!

Currently it feels like the rectum lacks the muscle strength to push the full amount of stools out. I just woke up today feeling a bit constipated and bloated and went to the toilet. I did not get out much, but what I did get out didn't take much effort. Looking forward to see what it's like once the wounds and swelling heals. Still early days.


----------



## westr

so youre from finland and went to the oxford pelvic floor centre. did they do a defecography or did they diagnose you through other means? did you ever have a defecography elsewhere to which they said there was no problem?


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## QuietDesperation

Westr: I am from Norway and i took a flight to UK for this surgery only. Stayed in oxford about 10 days. I did defecography in Norway back in May 2014, you can read the report in full on page 2 of this topic, but basically what it says is that there is a full thickness internal rectum prolapse.

In Oxford they only did anorectal physiology and endoanal ultrasound, but Lindsey could see the prolapse when I was under anesthetics. They did not require me to do defecography because I gave them a copy of the test I did in Norway and based on my symtpoms I was certainly elidgble for surgery.


----------



## horizonzero

Good luck hopefully everything turns out of for you !


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## paulwilliams

FBO CURED!!! I used to have the same problem of feeling like my rectum wasn't closed properly and something was coming out. There would be this foul, mucous discharge in the morning and I couldn't empty myself all the way after a poo. I had to go back to the bathroom 30 minutes later and then rewipe again, almost sticking the toliet paper up my bum. I didn't smell anything and my family and friends told me that I was crazy (basically). But I heard tons of comments basically saying that i smelled like poo (is there a word stronger then embarassed?). Anyway, I finally went to the gastro doctor and she said I had like grade II/III hemorrhoids and the thing that felt like it was coming out was the hemorrhoids.

She said it doesn't cause an odor, but I really don't understand that because the mucous discharge of hemorrhoids have a foul odor (a common sign) Anyway, she give me meds and it is 100% better, but I was so panicked I also added the following rountine changes:

1) Chlorophyll pills

2) Using baby wipes instead of toliet paper

3) Sitz bath with 7 lemon drops in the morning and a probiotic soap

4) Shower with anti-bacterial soap

5) Detox diet (with no meat, fish, eggs, no processed foods or animal byproducts)

6) Prebiotic shakes

7) Probiotic supplements

8) Water sitz bath - 15 minutes

9) Sitz bath with 7 tea tree oil drops and a probiotic soap

10) Shower with pH balancing properties and moisturizers*

11) Hemorrhoid cream

12) 30 minutes of exercise a day

13) No alcohol

14) Drink 3 liters of water a day with lemon juice

15) Drink 2 tablespoons of apple cider vinegar

*DO NOT take a 6th shower - at least not with soap, you will burn.

I also ordered some medicinal clay and charcoal tablets but I don't think I will need them. My point is you can solve your problem, you just have to be willing and dedicated. There is a cause for your body odor which means there is a solution. Although it is horribly embarassing, there is nothing YOU DID WRONG. It is something that happened to you, not something you did. Keep trying and you will find a solution, a lot of times it's something in the diet that you have to eliminate, like gluten, animal products, etc. Hope this helps someone!


----------



## bluelake 18

Man I just started suffering from oder and. Leeky soda and water does work for oder slammed two big cups and order just about gon my whole. Body was order but need help with leeky please. Help


----------



## horizonzero

paulwilliams said:


> FBO CURED!!! I used to have the same problem of feeling like my rectum wasn't closed properly and something was coming out. There would be this foul, mucous discharge in the morning and I couldn't empty myself all the way after a poo. I had to go back to the bathroom 30 minutes later and then rewipe again, almost sticking the toliet paper up my bum. I didn't smell anything and my family and friends told me that I was crazy (basically). But I heard tons of comments basically saying that i smelled like poo (is there a word stronger then embarassed?). Anyway, I finally went to the gastro doctor and she said I had like grade II/III hemorrhoids and the thing that felt like it was coming out was the hemorrhoids.
> 
> She said it doesn't cause an odor, but I really don't understand that because the mucous discharge of hemorrhoids have a foul odor (a common sign) Anyway, she give me meds and it is 100% better, but I was so panicked I also added the following rountine changes:
> 
> 1) Chlorophyll pills
> 
> 2) Using baby wipes instead of toliet paper
> 
> 3) Sitz bath with 7 lemon drops in the morning and a probiotic soap
> 
> 4) Shower with anti-bacterial soap
> 
> 5) Detox diet (with no meat, fish, eggs, no processed foods or animal byproducts)
> 
> 6) Prebiotic shakes
> 
> 7) Probiotic supplements
> 
> 8) Water sitz bath - 15 minutes
> 
> 9) Sitz bath with 7 tea tree oil drops and a probiotic soap
> 
> 10) Shower with pH balancing properties and moisturizers*
> 
> 11) Hemorrhoid cream
> 
> 12) 30 minutes of exercise a day
> 
> 13) No alcohol
> 
> 14) Drink 3 liters of water a day with lemon juice
> 
> 15) Drink 2 tablespoons of apple cider vinegar
> 
> *DO NOT take a 6th shower - at least not with soap, you will burn.
> 
> I also ordered some medicinal clay and charcoal tablets but I don't think I will need them. My point is you can solve your problem, you just have to be willing and dedicated. There is a cause for your body odor which means there is a solution. Although it is horribly embarassing, there is nothing YOU DID WRONG. It is something that happened to you, not something you did. Keep trying and you will find a solution, a lot of times it's something in the diet that you have to eliminate, like gluten, animal products, etc. Hope this helps someone!


What medication did she give you ? I'd honestly like to try it because I have them too on either side of the rectum + the baring down feeling


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## QuietDesperation

It's been 4 weeks. I honestly can't say I'm much better yet. I'm having incomplete evacuations and urge many times per day. I have to push quite a bit and have even done a few rectal irrigations for relief (that works still). I don't think I'm worse either. There are some minor improvements, e.g less hot/sweat ass during warm/hot weather and/or exercise, slightly less IC pain, I don't feel as blocked and usually get some stool out, however it does require straining unless the urge is very strong. I am not able to really strain fully due to pain that has not resolved yet, and also I don't like the idea of straining very hard anyways as I don't want more prolapse. I was hoping it would just come out without any effort, but that is simply not the case.

I forgot to mention this in my previous post, but they also found that I have a solitary rectal ulcer. They did say it will take time for it all to heal, and 4 weeks is only 50% of the 2-3 months timeline they gave me. So I'm not going to worry much yet, it's still a lot of recovery left to do.

I don't regret the surgery. Things are looking up. I'll just have to give it more time now and see...


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## rewinj

Yeah, four weeks out is still early days. In my mind I'd have to give it a good 6 months to a year before making any major judgements about how things have played out (I did have a resection as well though-- 8 inches of sigmoid colon removed-- so perhaps mine was a bit more serious).

Glad to hear that you're coping pretty well so far... good luck in the coming weeks!


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## rewinj

As far as my situation goes... I continue to struggle immensely, with severely obstructed defecation. I'm now pretty certain that I in fact never had a rectal prolapse, but instead was experiencing part of my descending colon intussuscept and then fully prolapse out my rectum (very rare-- and always misdiagnosed as rectal prolapse). I never experienced any incontinence, my prolapse would never emerge during a productive bowel movement (only when things were completely blocked), and always automatically reduced very quickly. On top of that, during the surgery it was found that I had a "massively redundant sigmoid colon". My diagnosis of full thickness prolapse was made on the basis of a very quick iphone video sent to the surgeon. Prior defecography was "ambiguous but seems to indicate an intussusception." Based on my reading of the research (and what I distinctly feel inside), giving me the rectopexy (fixing the rectum to the sacrum) actually made the intussusception of that descending colon more severe (less slack or give in the rectum = more collapse in the sigmoid), so even though there are now 8 inches less thanks to the resection... that part of the colon is even weaker now. Diagnosing that chronic/recurrent intussusception seems super challenging though, and I'm worried I'll have to wait until the event I become fully obstructed for this to actually be seen on x-rays.

I doubt that most of last paragraph makes sense to anyone... not even my surgeon. Sigh.

In the meantime I find it very challenging to eat enough, and despite trying so hard every day to force in food... have been losing even more weight.














Doctors are more suspicious of anorexia nervosa than they are interested in my bowel complaints   All I want is to get on with my life!!!

No idea what I'll be doing next. Still trying "everything I can conservatively" otherwise I'm looking at a "permanent bag", according to the surgeon. To me, it feels like my rectum still functions alright but the descending colon is a total mess. I think a left hemicolectomy is probably what I'll ultimately need here.

I do still need to try peristeen/rectal irrigation, but my surgeon wants me to do more conservative trials here first. All my doctors seem quite averse to rectal irrigation, for whatever reason, and its not easily available in Canada.


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## Ouchie81

Would love an update quiet desperation


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## Enkidu

My colonoscopy result said: "severe looping in sigmoid". Can this alone be the culprit of the smell?


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## QuietDesperation

Ouchie81 said:


> Would love an update quiet desperation


Now that it's getting close to 2 months. I'm doing alright. I don't regret the surgery, I do notice improvements, I'd say I'm probably something like 20% better. So it hasn't been a magic cure or anything so far. But I feel like I need to give it more time to really judge. I'm better in various ways. I feel like the "good" days I had with prolapse are almost daily now, while I have much less of the "bad" days. I am having less issue with wet/sweat ass when urge, exercise etc.

The only negative side effect I have experienced is pain at night in my lower back. It actually wakes me up so I'm not sleeping too well. I imagine that it will pass, but I'll definitivly ask my surgeon about that when I have the follow up conversation.

So I'm asking myself why I'm not 100% better, if the prolapse is gone I'd expect more than 20% improvement. The conclusion I'm at currently is that either there is more prolapse left, e.g posteriorly. Or I'm having some kind of pelvic floor dysfunction that prevents me from relaxing and thus empty. My guess is that I'm dealing with the dysfunction because I notice several signs of that. So I guess next step will be to get into pelvic physiotherapy to see if that can help. Example is: that I can often get a pretty big amount of stool out if I wait until the urge to go is very strong. Then my muscle relaxes naturally. Otherwise it often feels super tight.


----------



## QuietDesperation

rewinj said:


> As far as my situation goes... I continue to struggle immensely, with severely obstructed defecation. I'm now pretty certain that I in fact never had a rectal prolapse, but instead was experiencing part of my descending colon intussuscept and then fully prolapse out my rectum (very rare-- and always misdiagnosed as rectal prolapse). I never experienced any incontinence, my prolapse would never emerge during a productive bowel movement (only when things were completely blocked), and always automatically reduced very quickly. On top of that, during the surgery it was found that I had a "massively redundant sigmoid colon". My diagnosis of full thickness prolapse was made on the basis of a very quick iphone video sent to the surgeon. Prior defecography was "ambiguous but seems to indicate an intussusception." Based on my reading of the research (and what I distinctly feel inside), giving me the rectopexy (fixing the rectum to the sacrum) actually made the intussusception of that descending colon more severe (less slack or give in the rectum = more collapse in the sigmoid), so even though there are now 8 inches less thanks to the resection... that part of the colon is even weaker now. Diagnosing that chronic/recurrent intussusception seems super challenging though, and I'm worried I'll have to wait until the event I become fully obstructed for this to actually be seen on x-rays.
> 
> I doubt that most of last paragraph makes sense to anyone... not even my surgeon. Sigh.
> 
> In the meantime I find it very challenging to eat enough, and despite trying so hard every day to force in food... have been losing even more weight.
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> Doctors are more suspicious of anorexia nervosa than they are interested in my bowel complaints
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> All I want is to get on with my life!!!
> 
> No idea what I'll be doing next. Still trying "everything I can conservatively" otherwise I'm looking at a "permanent bag", according to the surgeon. To me, it feels like my rectum still functions alright but the descending colon is a total mess. I think a left hemicolectomy is probably what I'll ultimately need here.
> 
> I do still need to try peristeen/rectal irrigation, but my surgeon wants me to do more conservative trials here first. All my doctors seem quite averse to rectal irrigation, for whatever reason, and its not easily available in Canada.


Sorry to hear that. I don't know anything about what it's like to have a descending colon, if that is the case. But please do try rectal irrigation once you can. If the alternative is the bag, you definitivly have to have tried it first. It works for me, I can empty, 100%. Sure, it's not great, it takes like 45 minutes, and sometimes I have to try twice. But it's something I know works and can do whenever I feel like I'm too constipated. I'm usually doing it like twice a week (taking a break right now to see how the surgery has worked), but you may do it like every 2nd day to keep it empty at all times. Again I'm not sure if that will work or not with descending colon but it's worth a try at least.

Your situation is awful and sounds a lot worse than mine too. Even I have been thinking about life with stoma. I'm thinking it may not be so bad... many feel like they can finally move on with their life once they get the bag. And leave all the bowel issues behind for good. I still think one should try the alternatives first, as long as one is not suffering incontinence, in that case I would probably go straight for the bag.


----------



## QuietDesperation

*Update:* Spoke with my surgeon. He found it very interesting that I have had some lower back pain post-op (which by the way has been fading and is even less now). He thinks that this could indicate an incomplete repair. Basically in some patients when you do an anterior rectopexy you'll lift the rectum up anteriorly and it will also be lifted posteriorly, but for some patiens this is not the case. In fact some patiens may have predominantly posterior prolapse and this could result in the repair not really fixing the full prolapse, only half of the wall. He suggested this could be why I have not seen a lot of improvement, but have seen a small change. As far as further treatment is concerned, he thinks I am fit for a STARR operation, or alternativly I could go with a Delorme's. In his opinion I'd most likely have the STARR done only posteriorly, and having it done only on one side of the rectum will reduce the typical side-effects such as urgency that comes with the operation.

I am going to spend some months now just waiting and not do much. I am just not ready to go and have another surgery, both financially and emotionally. I need some time. And in the meantime I will see if I can get an EUA done to figure out current status of my prolapse. In addition next week I'll begin my first session with pelvic physiotherapy, which is also going to be interesting. My surgeon agreed that there is no rush and that it may be a good idea, he suggested I could perhaps see another 10-15% improvement with pelvic type of exercises.

Still not regretting surgery, still feeling a small improvement overall. Things are better than before surgery for me. But not close to "normal", I still do rectal irrigations a few times per week, considering doing more.


----------



## dlind70

I suspect liver issue: Take this tonic, it cleans the liver 1:00 am ideal timing raw cacao powder tsp, grade b maple syrup tsp, 8 oz brewed coffee


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## QuietDesperation

So I've been a few months in pelvic physiotherapy. I get exercises that I do at home. Different ways to relax the pelvic floor and how to sense it. I can feel what I only know to describe as spasms in my pelvic floor and what we're trying to do is reduce those. My physiotherapist was hesistant to use the phrase spastic pelvic but says I got an overactive pelvic floor and has faith that doing these exercises will get it to calm down. She says it could be the cause of my issues.

I've been doing daily or every second day exercises and I may have felt some minor improvements. Like slightly reduced spasm feeling and increased ability to let out stool by relaxing better. However I can't really say it has been any major change so far and I'm questioning how much it really benefits me. My physiotherapist makes the point that it takes a long time to relax a pelvic floor like mine and that I need to be patient, and so I'm just going to keep trying and see how it goes.

In other news I have tried my best to get a EUA of my prolapse, but it seems there is no such thing in my country. I did get another rectoscopy yesterday where everything looked fine and I spoke with a surgeon afterwards. He asked if I had ever thought about getting an colostomy, and told me that many patients feel like their life is better after getting one.

I said I have read about it and it's not really my first wish to get that, which of course he understood. I'm thinking that I should complete the treatments available before something as drastic as a permanent colostomy bag. I'm trying to imagine living with that versus how I live now and it's hard to tell what is worse. Both has advantages and disadvantages. I'm currently considering increasing how often I perform rectal irrigation, I've tried a few times already to do it daily, but I fail to keep it up after more than 3-4 days. Not fun spending that 1 hour in the mornings only to have to do it all over again the next day.

I guess my only other option now then continue living with this condition is a STARR or delorme. Which means another trip back to england. If that fails colostomy is the last option I have. So currently waiting, because I don't feel ready for STARR. Not financially, emotionally or healthwise.

The IC is with my every day and I just wish I could get the pain reduced more. It's the worst part of this, even worse than the prolapse. If I didn't have that pain my life would be much better. Hope you guys are doing alright. Any questions? shoot


----------



## tummyrumbles

A colostomy bag seems drastic and would end all hope of a "normal" life. I think the reason why doctors and physios don't understand this condition better is because the underlying cause could be bacterial overgrowth, and testing isn't really good for this. Very little is understood about the bacterial populations in the gut; they're too hidden away and hard to access. I know I can manage my symptoms very well, but it involves not over-eating, not eating things like nuts that are just too hard to digest properly, eating early etc and all this is hard to do. The idea is to reduce the fermentation of food in the gut as much as possible. Less fermentation means less food for bacteria. There could be simple things contributing to IBS - maybe some of us take longer to fully digest our food or maybe there are issues with signalling in the colon / brain. If this is the case I don't know if there's a cure so the best I can do is manage my food intake so that most of the food is easily digested. The underlying problem, for me anyway, is the long delays between BMs but I've learned to live with that. It could be that some issues feed other issues, so if you do have bacterial overgrowth this interacts with colon / brain signalling. I used to try to work this out but it's too hard. I just know that if I want a day where I'm seated next to people and don't want any symptoms then complete evacuation is the only thing that works. I allow 1.5 hours every morning and this seems to work well. I'm quite sure I've got a bacterial overgrowth as my family all eat the same foods but I'm the one with all the gas. That hasn't changed so I think the bacterial overgrowth is here to stay. I just don't have the willpower to reduce the starches in my diet which probably would work if I kept at it. The danger is thinking that surgery is the only option. I'd try modifying your diet first but it all takes enormous willpower.


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## lefourier

Hi! Been following this topic for a while now as I myself been strugling with pelvic floor issues. Recently got diagnosed with a low grade internal rectal prolapse and a descending perineum. Sorry to hear that you haven't improved much. The worst part for me is the constant discomfort from descending perineum wich makes it difficult to sleep. Have some problems with obstructed defecation as well but this I think have improved some since I started doing kegels. I also have a hypothesis about obstructed defecation that it depends on friction. Some days I can empty my bowels with ease and some days it's impossible to get the last bits out. Using my fingers to get it out, I can really understand why it's not getting out by it self, the friction with the intestinal wall is too high. This off course is just a hypothesis. Googling for ways to increase mucus production wasn't easy and the only thing I found was proton pump inhibitor wich decreases the acid iin the stomach which might increase the mucus. Only been trying this for a couple of days I think there have been some improvment but need to test more.

But will probably have surgery to fix my problems, waiting right now for a meeting with a surgeon.

Regarding the colostomy bag I feel you. Would like to test everything before that. Also wondering since you are norwegian if you heard about this company ostomycure as? It's a norwegian solution to the colostomy bag, probably at least a couple of years until it's available on the market but maybe could sign up for clinical trial if it becomes an option.


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## QuietDesperation

tummyrumbles said:


> A colostomy bag seems drastic and would end all hope of a "normal" life. I think the reason why doctors and physios don't understand this condition better is because the underlying cause could be bacterial overgrowth, and testing isn't really good for this. Very little is understood about the bacterial populations in the gut; they're too hidden away and hard to access. I know I can manage my symptoms very well, but it involves not over-eating, not eating things like nuts that are just too hard to digest properly, eating early etc and all this is hard to do. The idea is to reduce the fermentation of food in the gut as much as possible. Less fermentation means less food for bacteria. There could be simple things contributing to IBS - maybe some of us take longer to fully digest our food or maybe there are issues with signalling in the colon / brain. If this is the case I don't know if there's a cure so the best I can do is manage my food intake so that most of the food is easily digested. The underlying problem, for me anyway, is the long delays between BMs but I've learned to live with that. It could be that some issues feed other issues, so if you do have bacterial overgrowth this interacts with colon / brain signalling. I used to try to work this out but it's too hard. I just know that if I want a day where I'm seated next to people and don't want any symptoms then complete evacuation is the only thing that works. I allow 1.5 hours every morning and this seems to work well. I'm quite sure I've got a bacterial overgrowth as my family all eat the same foods but I'm the one with all the gas. That hasn't changed so I think the bacterial overgrowth is here to stay. I just don't have the willpower to reduce the starches in my diet which probably would work if I kept at it. The danger is thinking that surgery is the only option. I'd try modifying your diet first but it all takes enormous willpower.


Do you have some physical defects like rectal prolapse? I've been drinking joylent a lot recently which helps to keep the stool smooth and I think it does help some in letting it out. I don't think there is any way for me to get better stool consistency than that, as it seems to be about perfect. I don't know much about bacterial overgrowth to be honest, but since they have identified my internal prolapse I do believe that is the cause of my issues. How the IC came to be is another story all together, but I feel like there is some connection between the two.


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## QuietDesperation

lefourier said:


> Hi! Been following this topic for a while now as I myself been strugling with pelvic floor issues. Recently got diagnosed with a low grade internal rectal prolapse and a descending perineum. Sorry to hear that you haven't improved much. The worst part for me is the constant discomfort from descending perineum wich makes it difficult to sleep. Have some problems with obstructed defecation as well but this I think have improved some since I started doing kegels. I also have a hypothesis about obstructed defecation that it depends on friction. Some days I can empty my bowels with ease and some days it's impossible to get the last bits out. Using my fingers to get it out, I can really understand why it's not getting out by it self, the friction with the intestinal wall is too high. This off course is just a hypothesis. Googling for ways to increase mucus production wasn't easy and the only thing I found was proton pump inhibitor wich decreases the acid iin the stomach which might increase the mucus. Only been trying this for a couple of days I think there have been some improvment but need to test more.
> 
> But will probably have surgery to fix my problems, waiting right now for a meeting with a surgeon.
> 
> Regarding the colostomy bag I feel you. Would like to test everything before that. Also wondering since you are norwegian if you heard about this company ostomycure as? It's a norwegian solution to the colostomy bag, probably at least a couple of years until it's available on the market but maybe could sign up for clinical trial if it becomes an option.


Hello! Welcome to the forum. Low grade prolapse is a though one, I believe I read somewhere that around 60% of the population has some form of low grade internal rectal prolapse, and I'm pretty sure they don't do LVMR for that. If you have descending perneum a STARR operation is off the table too. But maybe there are some other surgery that can be done. How did you get diagnosed? Do you feel a lot of discomfort when you sit as well? What's the worst symptom you have?

I just did some research on ostomycure. Thank you for mentioning that. It looks VERY interesting. If I ever choose to go down that road, this seems like the kind of thing I'd want. I see they started doing clinical trials back in 2011. I long wondered why this isn't a thing yet, it's 2015 and bags just seems too outdated. I'll have to read up more on this.


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## lefourier

I got the diagnosis after defecography but havent seen the video myself. The doctor who gave me the diagnosis suggested surgery but I'm not sure which procedure. Right now I'm waiting for a meeting with a surgeon to discuss more about what to do next and to see the video. I've read that too, so I'm guessing most of my problems are from descending perineum. The symptoms are incomplete bowel evacuation and rectal discomfort. I got the symptoms two years ago and in the beginning it was kinda hard to get any real attention from the doctors. They belived I had hemorrhoids and been recomended suppositorys for hemorrhoids from three different doctors even though they've confirmed that there was no hemorrhoids present. After that it was IBS, been recomended fiber suppleants from three different doctors as well even though I told them I belived ther was not something wrong with the consistency of my feces. A big problem have been that I'v almost never met the same doctor two times, After getting a remittance to a colon specialist I finally got a defecography done and thats where I'm at right now.

My symptoms have improved slowly and right now I'm having normal bowel movements at least 3-4 times a week. If i'm having an incomplete bowel movement I get rectal discomfort which is hard to describe. Some kind of rectal pressure and it feels like sitting on something. The discomfort is present even though I have a normal bowel movement but much less of it.

Please dont get your hopes too high on this ostomycure, There might be a long time till there is a product for colostomy. The clinical trial was for ileostomy. It seems to be hard to get good ingrowth of soft tissues in to implants.

I think bags arent outdated yet because there is not much research trying to solve it. The companies that are selling bags are probably trying to improve the bags but not finding a replacement since that would make them lose a secure long term income.


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## tummyrumbles

Quiet Desperation, no I don't have a rectal prolapse but it could be that chronic constipation and straining leads to a rectal prolapse. The same thing with haemorrhoids. They are usually caused by straining. So it could be that rectal prolapse and haemorrhoids are just symptoms of chronic constipation, not the actual cause. In my case I ignored the call to go as I was growing up and I think this affected the brain / colon pathways. My actual problem is incomplete evacuation which tends to be several BMs and with a long delay between them, so I have to wait it out. You could argue that this is a pelvic floor dysfunction but if this was the case then diet wouldn't make any difference, but in my case, diet makes a huge difference, which is why I wouldn't ever consider having an operation for pelvic floor dysfunction. The point about the bacterial overbalance is that methane for instance can behave like a neurotransmitter. Methane is believed to affect serotonin, a colon regulator. The point I was trying to get at was that even though you have have physio or medical tests that show definite pelvic floor dysfunction, it's possible that the presence of bacterial overgrowth could have an affect on this. Anyway who is bothered with gas symptoms from their incomplete evacuation should consider bacterial overgrowth as an underlying cause. Methane itself is believed to cause constipation. Bacteria can affect brain / colon signalling, which is why a lot of us find our symptoms reduced if we eat or don't eat certain foods. On the other hand if you don't have gas symptoms (no leaky gas for instance) then bacterial overbalance might not be your problem. The risk here is wrongly ascribing symptoms of constipation as the cause, because if you do an operation won't fix the underlying problem.


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## shestinkks

Sooooooooo how'd it go? Do you still have the smell?


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## QuietDesperation

shestinkks said:


> Sooooooooo how'd it go? Do you still have the smell?


Nope, no smell.

It's now 10 months since the LVMR surgery so I can summarize how it helped me. I couldn't go for a walk without getting very sweaty around the anus. After surgery I was 100% dry. The warm sensation went away almost completely. I still have some sweat issues when I have the urge, but it's not bad. I have the urge less now than pre-surgery, but I still have incomplete evacuation and usually have to go 2-5 times per day. I have no regrets on getting the surgery, but I also don't see any further improvements at this point. Before the surgery I was more desperate, now I feel like things are manageable even though it's not great. I see three options right now:

1. Leave it as it is. Maybe do rectal irrigation more often (or daily).

2. STARR or Delorme

3. Ostomy

None of those options are very appealing, so right now I'm in a long period of contemplation.

*Update regarding IC:* I had another hydrodistention in the beginning of March and two small hunner's ulcers was discovered and burned off. The recovery period was very painful, I'm not sure what the hell was going on, but after peeing I got some extremely intense pain in my abdomen, it was so painful I had to just lie down and wait for 3-5 minutes until it calmed down. This went on for 3 days and I had no stool come out during that time. I did a rectal irrigation and after the pain went down a lot. So for the next few weeks I've been peeing blood and hurting, but it has settled down now, I do think burning of those ulcers may have helped as I've had periods of less pain when I otherwise would expect there to be pain. Looking good so far. One of the reason I've not been a big fan of rectal irrigation, despite how uncomfortable it is to do, has been IC pain seems to get worse after it. Maybe that's no longer the case.


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## cj15o

How has your sensitivity been like (e.g. still coming on fast?) What about passing gas post-op?


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## anonanonski

How are your urinary symptoms?


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## QuietDesperation

cj15o said:


> How has your sensitivity been like (e.g. still coming on fast?) What about passing gas post-op?


I think after operation I get the urge less often than I did before, but the urge when it arrives is just as strong and sudden. There may be a slight sensation of urge before it occurs now. The biggest issue with the urge for me is I get very sweaty, so while I can easily hold it, that still sucks. The sweat however is not as bad as it was pre-surgery. Regarding passing gas it has been easier after surgery aswell, but still hard. I have to lean over to the side or lie down to pass gass, otherwise can only pass small amounts.

The last few months I feel like I been getting slightly worse again. It almost feels like prolapse is coming back. I will be getting another defecography in july. Mr. Lindsey did not see the point in that and adviced an investigation under anesthesia using a CAD device, but the surgeons in my country are clueless regarding this, so I'll just have to take another defecography. I guess it may be of some value.



anonanonski said:


> How are your urinary symptoms?


They're actually not that bad. I've been on a 6-week weekly Uracyst treatment after the hydrodistension. I feel less pain daily and can go hours without urge. Probably the closest I've been to normal since I got sick. That said, I still have pain at times, especially after irrigation. It's summer and hot, so maybe that makes me feel better as well. I seem to be having less urine. I guess I'll be getting another operation to burn off remaining ulcers. I am very optimistic regarding my Interstitial Cystitis right now. Things are looking good. I think at this point I have the least pain in total since I got sick. I am very thankful for this improvement. How is you?


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## Working on wellness

How is the smell [odor]?


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## QuietDesperation

Working on wellness said:


> How is the smell [odor]?


Never really had any big issues with that. There was a period of many 2 months or so where I noticed it when things were at its worst, but my smell was gone before I even took the surgery. I have zero odor today. But... I have to let out gas a lot.... and it's usually trapped.


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## Working on wellness

Oh thats great! I have your same symptoms but with a horrible odor. It varies in smell {it mostly resembles methane or feces}, sometimes I think I would take all the pain in the world instead of this dreadful odor. I am not giving up, I am still visiting doctors to get a diagnosis.

Please continue to post. You bring awareness, hopefulness and insight.

Thank you.


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## QuietDesperation

Hey guys

I just had a new x-ray defecography. Did the internal rectal prolapse disappear? It seems so. I don't know exactly how to translate the result from my native language. But I'll try...

*During squeeze/tightening the anorectal angle is 74 degrees and during rest it's 90 degrees. There's a quick emptying of the rectum. At the very end of the defecation it appears what seems to be a small fold in the mucous that stretches down to the top of the anal canal (the anorectal transition). There's no basis for full-thickness internal herniation. No enterocele nor rectocele.*

You can read the results I had on defecography before I had surgery here

Anorectal angle should be 90-100° at rest, I had 100° before surgery, 90° now. During squeeze/tightening it should be 70 - 90° and I had 74° now versus 70° before. So no major difference I guess.

I feel like what is described may be a mucosal prolapse, but it's a major issue for me. I suspect they may not have seen everything because pushing out the contrast dye didn't really give the sensation I have with normal bowel movements. I believe the mucosal goes further down than just the top of the canal and is bigger than described. That's just speculation based on how I feel during a bowel movement versus defecography. Again, Lindsey did not see much value in doing a defecography and suggested an investigation under anesthesia. Of course, the norwegians have never heard of such thing. Truth be told, based on my discussions with mr. Lindsey and the "top" norwegian surgeons I feel like they are from different planets. Mr. Lindsey from planet earth and the norwegians from planet of the apes. Yes, that's pretty harsh, but the system here sucks and is not solution oriented. My surgeon even said before I had the defecography that I most likely have irritable bowel disease. This, I believe, is a bullsh*t diagnosis they give people so they can fob them off. A very good sign that it is so is when they give you that diagnose without first doing tests to see if there's something else going on. And especially when the patient just had surgery for rectal prolapse! It makes me really mad.

To be fair I've spoke with a few surgeons in the lower ranks that were pretty cool here in norway, so it's not all sh*t. But I'm full of sh*t right now, literally that is. I can't get it out. Will I do another rectal irrigation or go to sleep in pain?


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## leeflee24

I am also 24, but female and find this to be the most embarrassing and depressing situation I'be ever had to deal with in my life.

My symptoma include:
1. This constant pressure in my anus
2. Alternating between constipation and diarrhea 
3. Incomplete evacuation 
4. Fecal body odor before and directly after having to empty my bowels
5. Leaky gas
6. Pain in anus when constipated

I remember this condition starting in high school... and being made fun of because I was really gassy and could not hold my farts in. I just remember always having to pass gas no matter what. Then one day I just remember having this feeling of always passing gas even without my knowledge. Which has progressed to always having pressure. Now it has gotten 1000 times worst because I feel as though I always smell.. I hate being at work as people are talking about me and don't want to be around me. It affects my concentration and I really just want to quit. Why.... that's all I'm asking God. Why.


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## Guest

I just had the rectopexy, no resection, using mesh, done the arthroscopic method. through my belly. My results were not perfect: 80% reduction of prolapse with much less protrusion and much less wetness during the day/night. It is a tremendous improvement even though I was hoping for 100%, as surgeon had promised! I am only 6 days out of surgery and very much still in the thick of the healing process.

I have two question for anyone who has had this procedure (that my surgeon never warned me about), and I am worried:

1. I am having extremely bad lower back pain. Is this low back ache normal for recovery and, if so, how long will it last?

2. I also feel like I can not bear down at all to have a bowel movement. If I try to use the bathroom and push even a little, it hurts so badly and feels like the stitches inside my body are pulling and it scares me to push at all.

Is all this normal for a week after this surgery? Much appreciate to all who reply.


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## QuietDesperation

nycanimallover said:


> I just had the rectopexy, no resection, using mesh, done the arthroscopic method. through my belly. My results were not perfect: 80% reduction of prolapse with much less protrusion and much less wetness during the day/night. It is a tremendous improvement even though I was hoping for 100%, as surgeon had promised! I am only 6 days out of surgery and very much still in the thick of the healing process.
> 
> I have two question for anyone who has had this procedure (that my surgeon never warned me about), and I am worried:
> 
> 1. I am having extremely bad lower back pain. Is this low back ache normal for recovery and, if so, how long will it last?
> 
> 2. I also feel like I can not bear down at all to have a bowel movement. If I try to use the bathroom and push even a little, it hurts so badly and feels like the stitches inside my body are pulling and it scares me to push at all.
> 
> Is all this normal for a week after this surgery? Much appreciate to all who reply.


Where did you have surgery if I may ask? Glad to hear you had some success. I am happy I did it myself, despite not having a lot of improvement, it was the right thing to do, and helped some. I actually discussed the lower back pain with my surgery on our follow up call because I also had that, and he said that was an extremely important symptom because this symptom could indicate some leftover prolapse on the back wall. In my case it was bad most at night. I would not rate it as extremely bad lower back pain, but it was pretty sore... The pain eventually subsided, and now I only have pain occasionally. I'm pretty sure there is a connection, when I have strained a lot / pressure in rectum as there seems to be more lower back pain then.

I wouldn't worry about this so soon in your recovery. Give it at least 6 months. Though it can be an interesting symptom, as my surgeon said. Perhaps that is why you did not improve 100%. My surgeon recommended that I do a supplementary STARR for the finishing touches. Well I've not done it, since that operation scares me. Still undecided.

My surgeon did not warn me about this either. But now, more than a year after surgery I can't say it bothers me a lot as it's not chronic and not happening often.

As for 2. I also felt like that. As if I could not bear down at all. It gets better. Although it hasn't really come to the point where it feels normal. I'm having incomplete evacuations to this day... my surgery wasn't really that successfull in that regard. Since one of your walls are held up by a mesh, you don't get as much pressure to bear down with I guess. At least that's what a surgeon in Norway said.

The pain is also something I would not worry much about yet. But try to not strain if possible. 6 days is very early. Wait 2-3 months and things will start to settle down.

Hope you come back to update on progress some months down the line. Wish you the best of luck in your recovery!



leeflee24 said:


> I am also 24, but female and find this to be the most embarrassing and depressing situation I'be ever had to deal with in my life.
> 
> My symptoma include:
> 1. This constant pressure in my anus
> 2. Alternating between constipation and diarrhea
> 3. Incomplete evacuation
> 4. Fecal body odor before and directly after having to empty my bowels
> 5. Leaky gas
> 6. Pain in anus when constipated
> 
> I remember this condition starting in high school... and being made fun of because I was really gassy and could not hold my farts in. I just remember always having to pass gas no matter what. Then one day I just remember having this feeling of always passing gas even without my knowledge. Which has progressed to always having pressure. Now it has gotten 1000 times worst because I feel as though I always smell.. I hate being at work as people are talking about me and don't want to be around me. It affects my concentration and I really just want to quit. Why.... that's all I'm asking God. Why.


Did you get anything checked? Could be many things. Get yourself an x-ray defecography. Don't give up if the doctor says you have IBS or some bullshit like that. Get yourself properly tested.


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## Guest

Thank you. Your response helped me tremendously, more than talking to my surgeon.

I had it done at a "top" NYC hospital.

I appreciate that you experienced both symptoms, that they did get better, and that they are normal, or at least not uncommon.

My dr did not say he knew about these symptoms and even suggested an infection. I have no fever and no infection at all.

He suggested a second surgery with a resection which I will not let him do, because from all I read, it is a much harder recovery than I am having right now.

I also noticed when I tried to defecate, the pain in my front hurt like hell, but also the pain in my back also became worse. This is just as you explained. Hard to explain, but the 2 pain "spots" were directly in line with each-other, as if you could put a sword through the pain in the back and it came out the corresponding pain spot inside near my front. Hope I explained that well.

I feel I can not bear down at all, and I am not meaning straining, just normal defecating pressure you would use.

It is hard to explain unless you have been through it, I am sure you will agree.

I will be patient and wait it out. Thank you, Quiet. I truly appreciate you responding.

Also, I never heard of an x-ray defecography. I will ask about that at one month follow up.


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## Thissucks7

This forum is so helpful. I have also the same situation like yours for almost two years. what i do is taking psyllium husk 2x a day. It' s a lifesaver for me. Maybe for now i will take it daily to stay away from surgery since i read it in many forums that it is safe for long term. Im afraid of surgery though.


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## Guest

The front and back pain is becoming less, certainly not gone, but less. Yes, psyllium i.e.Metamucil is helpful because it bulks the stool up, or makes it "fluffy"!

But, boy, it is disgusting to drink. I took the whole 2 teaspoon dose and threw it up 20 minutes later.

Then, I tried 1 teaspoon next next day and am able to keep it down.

Here is what my doctor told me to do:

3 Colace stool softeners per day and 3 Metamucil doses.

Here is what I actually have been doing:

3 Colace, 1 Metamucil, and 1 serving prunes.

When I did that, I was able to easily move my bowels even though the post-surgical pain made it hurt.

Yesterday, I missed the Metamucil, and have no bowel movement.

I want to second what "Quiet" said: I also do not feel fully evacuated, ever, but I am about 2 weeks post surgery for the prolapse with mesh, so we will see if that changes.


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## Thissucks7

https://www.amazon.com/Foods-Whole-Psyllium-Ounce-Bottle/dp/B000OSSUP0/ref=sr_1_5_s_it?s=hpc&ie=UTF8&qid=1471852556&sr=1-5&keywords=psyllium+husk

I hope this helps.. I read also the forum. If you are interested, u can read it also. As of now i will just take it regularly while waiting that someone can discover the best surgery for it. Im really afraid of surgery. According to doctors i visited, for young people who has this its not life threatening but it just discomfort.


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## Guest

Thank you. I will look at that site soon.

No, I lived with it for so many years so I believe it is not life threatening in any way. It just really impacted my life style. I, too, was very afraid so put surgery off and as I already said my surgery was only maybe I believe the number now is 60% successful. It still protrudes sometimes a little. I still sadly must wear a pad or paper towel to absorb the wet mucus when I am walking around. Is it AS wet, no. So I am not sure what the answer is. I am 2 weeks post surgery today an still feels like I can not fully evacuate at all. I just got tired of being wet and it popping out when I pooped. Wish it had been 100% successful after all I am going through. :-(


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## Guest

Do you know anything about the nerves dr was mentioning?

Have been battling to get regular. Dr told me "the operation messes up my nerves" to my bowel?, or something like that because they sew to the spine. Can anyone tell me what that means? Either I have to take so much stuff that I have loose diarrhea or I am completely constipated. My old routine is not working anymore.

Do you know anything about the nerves dr was mentioning? I should have asked him what that meant but didn't.


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## Guest

Yes, that is exactly what the dr called it. He explained he sews half to the front and half to the back/sacrum? He said the nerve damage is less than the whole thing attached to the sacrum. I am comforted that the nerves come back. Thank you.


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## anonanonski

QuietDesperation said:


> Hi all...
> 
> I've been lurking here for a few months and have read many of your stories, some are very similar to my own.
> 
> 6-7 months ago I started having trouble with my bowel movements. I simply wouldn't be able to go in the mornings. It seemed to get better throughout the day. Because of this I started straining, and about 4 months ago more trouble began. I seemed to be getting incomplete evacuations constantly. Bowel movements became random and frequent 4-8 times a day, versus the usual 1 in the morning previously. Stools seemed to come out in fragmented pieces, no consistency. Often when straining I would feel a "ball" sort of thing coming out of my anus. Things just didn't seem normal.
> 
> Here are some symptoms I'm suffering from:
> - Obstructed defecation, it feels like something is blocking, this is worst in the mornings where I am usually unable to go at all.
> - Incomplete evacuation. When I do manage to go, I never feel like I fully empty. Sometimes I will get the urge to go again only 10 mins after previous visit.
> - Almost constant mucous/wetness in my anus for most of the day, usually getting slightly better in the evenings. No color, if I wipe myself with paper I can't really see it. I have to wear protection or it will soak through my underpants and eventually pants.
> - The constant moisture/mucous comes with an odor. I don't think anyone else really notices, but I'm not sure.
> - I'm really not able to let out air like I used to, sometimes it's just hard to tell if I need to have a bowel movement or let out air. I still can recognize when it's air but it's difficult to let out and often result in a very incomplete *puff*. Just doesn't seem normal at all.
> - When the urge to go arrives (which happens more suddenly than before) I also get what seems to be massive sweating from my butt cheeks area. I'll be completely soaked in minutes if I don't go.
> - The "ball" I felt earlier seemed to have vanished or maybe not coming out as far anymore.
> - Often I'll have a weird feeling of pressure in my anus, a bearing down feeling which makes it very uncomfortable to sit on hard surfaces.
> - I also have a warm sensation back there often.
> - Lower back pain, but luckily not a constant thing
> 
> Seemingly out of the blue, about 2 months ago I developed urination issues as well. That includes symptoms such as: frequency, feeling the need to go again after 15-30 mins, I usually don't last more than 2 hours before I have to go and pee again. The beam is weaker and I don't know if my bladder fully empties. Stomach crampings/pain seemed to be another symptom related to this. I've had a few dripples, nothing major, but still an annoyance and added worry.
> 
> My doctor said she suspects I may have pelvic floor dysfunction, especially because I'm having issues with both bowel movements and urination.
> 
> I've been obsessivly reading up on this and I now suspect I have pelvic floor dysfunction combined with an Internal rectal intussusception or mucosal prolaps. Has anyone else been diagnosed with this and treated? I read the story over at curezone ( http://curezone.org/forums/fm.asp?i=2007440) about another guy suffering from similar issues, unfortunaly he never came back to report on the surgery. I wonder what happened.
> 
> What have I done?
> - Enema, this has helped me to clear my bowels. I try not to use it too often since I don't know the long term effect of doing this. After doing enema I'll usually get a better day than when I don't.
> - Laxatives. I don't use them now, it seemed like they don't work. Even if my stool is softer I still have incomplete evacuations. I may have to experiment more with this though.
> - Pelvic floor exercises. Yupp. I've been doing these for almost 1 month now. They say it's going to take 2-3 months minimum before you feel any difference. The latest week I had less odor and feeling of mucous leaking. Now it seems to be mostly sweat (although i'm not sure that it's really sweat, but it doesn't smell). A few days I barely got wet at all. I've had less bearing down feeling in my anus as well. Not much else seemed to have improved though, are these improvments a coincidence or related to my exercises? I don't know. But I'll continue doing them for now, it can't hurt.
> 
> Where am I at?
> So far I've done coloscopy & rectoscopy. Nothing was found here (unsurprisingly), though I was hopeful that the rectoscopy would show something at the time, all they found was that I had a small hemorrhoid, nothing really. The real test will be in mid-may when I'll be doing the x-ray defecography test. I'm feeling pretty confident this will finally give some answers. I'll also be going for consulation with an urologist sometime in april, I know most of you guys don't suffer from those issues, but I thought I'll mention it anyway, maybe somebody does.


I must ask you. Have you been taking any antibiotics before your problems started??


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## Thissucks7

Hello Anonanoski.. how are you? I read some of your post around. We have the same issue. Can i ask how did you manage you constipation problem? Unlike you, i have urge to defecate, but my problem is everytime i defecate, i always have big stool and hard in the beginning causing anal fissure that cause me pain.


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## tsc2345

***** MAY HAVE FOUND POTENTIAL CURE *****

Hi guys, I just created my account to post this... I have been suffering the exact same problem for over 3 years now and it has been driving me crazy.

It seemed to be particularly bad straight after eating food and drinking coffee - and I was constantly trying to avoid eating certain foods etc I felt triggered it.

In the last 2 weeks I have not changed anything in my diet, and my problem seems to have disappeared. What's changed?

****** I MOVED COUNTRY AND AM NOW DRINKING DIFFERENT TAP WATER ********

I have lived in Australia for the last 3.5 years, and it was during this time I first developed the problem... The water tastes quite a lot different from back home in the UK (more chlorine or different chemicals?). I have been back home in the UK (with a v similar diet) and the problem seems to have stopped. I am even drinking lots of coffee to try and 'trigger' it and nothing!! I have since concluded that it's not the food or coffee that was causing it... but the water I was drinking when eating (almost always tap water) and the water in the coffee!

I haven't seen anyone post anything like this so I'm hoping that I've discovered a potential cause which will help people be rid of the problem.

What country are you from? Maybe try swapping to bottled water - including for coffee etc?! Couple this with Fiber tablets (I had some success with these before I came back - although I am not having to use them now) and I HOPE I can help someone.

What country is everyone from? Do you drink the tap water? A lot of beverages / ice etc all use tap water.... I really hope this helps someone !

Tom *


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## PokerFace

Two weeks is usually just placebo... but thanks for sharing


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## PokerFace

I thought about water too at some point but didn't really do much about it .. my LG started after I moved on my own and had a different water in the new area (Rome has a lot of different water coming from all aver the region)... so I had this water ionizer and thought it was it causing it so I stopped using it for awhile but I didn't really stop the tap water it was using... I'm gonna try going bottled water because it would make no harm... also each time I travel I don't have any LG ...
You know what the first question I was asked from the doctor was after I explained the problem? It was "was you in contact with toxic chemicals?"
It would be too good to be true but trying doesn't cost a thing... and we have to rule out everything.
Keep us updated anyway please


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## QuietDesperation

Almost 2 years since last update. There's some good news.

I've had two operations for interstitial cystitis (Hydrodistension with fulguration of Hunner's ulcers), last time was 1 year ago now and ended in a bladder perforation (not fun!), but it healed well. I have "classic IC" where there's visible hunner's ulcers in the bladder. Burning those off has helped A LOT in reducing pain. But the effect wears off and I'm scheduled for a new operation now. It seems I need it yearly. My last uracyst treatment was in december 2017, hospital "can't afford" it anymore. Now I'm on the much more expensive medicine "elmiron" (how ironic...). $1650 per month apparently. Not sure if it helps yet. Seems like the operation is what helps the most, since without it, the ulcers are there, and they hurt. But I would say it's looking up. I've had a lot less pain the last two years.

The other big news is that I found a solution to the sweat issue. I didn't get any official diagnosis, but I'm guessing I had hyperhidrosis on my butt. Any physical activity, if it's just a little hot or if I had the urge to have a bowel movement and I would sweat excessively. The solution ? "Absolut Torr". I don't usually believe in miracle cures, but this is something else. I bought some Absolut Torr wet wipes and wiped them over the area. Did it a few days in a row to start with, and then once a week. The result is stunning; Not a single drop of sweat. Not a single one. 100% as in *one hundred percent* dry. I still double check to this day, it feels surreal. I was struggling so much with this and now I'm sweat free. I'm guessing botox injection treatment will also work well for me, but for now I'm sticking to absolut torr, it's cheap and only requires application once a week. I think the english name of the product is "absolute dry", I would recommend the wet wipes variant.

There's some bad news as well. But for most of the stuff discussed in this topic not much else has changed since my last update. I feel like I struggle a little less with bowel movements though, I am doing rectal irrigation every so often. I'm also back to pelvic floor therapy, with a new physician. She's doing things a bit different she's told me to massage my inner pelvic floor as I have very tight muscles. Also re-doing biofeedback. We'll see if any of this helps.

To the guy who asked about antibiotics; no, didn't take it before this started.

See you all, and happy recovery.


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