# Rectal hyposensitivity



## Hybo (Jun 29, 2018)

I have rectal hyposensitivity and it has given me fissures because I'm forcing poops out (that are soft) in fear of getting backed up. What is the ultimate out come with rectal hyposensitivity, if biofeedback doesn't work what? The only way I can get any type of urge is if it's Bristol 7. I'm getting to the point I would rather have a bag so I can have my life back.


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## annie7 (Aug 16, 2002)

hi

i was dx'd with colonic inertia, pelvic floor dysfunction, megarectum and rectal hyposensitivity. i had biofeedback for a very long time and while it did help a bit with pfd, it unfortunately did nothing for my RH. balloon retraining can help with RH. you might want to give that a try. my biofeedback PT worked with me on it but it didn't help me. i was a tough case.

here's an article on RH. scroll down to "treatment" to read about balloon retraining.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3479250/

i had to take both stimulant and osmotic laxatives in order to get any kind of urge and have a BM, especially with everything else i had going on.

very long story short, i finally ended up with an ileostomy.

good luck if you try the balloon retraining. it's worth a shot.


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## Hybo (Jun 29, 2018)

I'm assuming doctors would not call rectal hypo a demable cause for a bag


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## annie7 (Aug 16, 2002)

that all depends on how severe your condition is.

if you're unable to have a bm and are refractory to mediciations (constipation meds, laxatives) then ostomy surgery would be medically necessary. it's a surgery of last resort.


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## Hybo (Jun 29, 2018)

Did you deal with it by just giving your self diarrhea all the time?


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## annie7 (Aug 16, 2002)

i took laxatives. my stool ranged from very soft to somewhat runny.

the laxatives gave me the urge to go but for me it was not an uncontrollable urge, like you get with D.


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## flossy (Dec 8, 2012)

Hybo, do you take anything daily to help you go or no? If so, what have you tried so far?


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## Hybo (Jun 29, 2018)

I'm taking 2 scoops of miralax 3 250 docusate sodium it had to be Bristol 6 or 7 for me to feel anything. If it's harder I can't feel it. And I have a fissure so I have to stop forcing it


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## annie7 (Aug 16, 2002)

yes, straining is bad. it's also counterproductive. it locks up the pelvic floor muscles and makes even it harder to get things out.

i don't know if this will help you or not but here's a good utube video on how to have a bm without straining. it's important to do what she says and "make your waist wide" and push from there--not from your rectum.






also--have you tried elevating your feet? elevating the feet on something like an overturned waste bin, step stool, large shoe box or squatty potty helps straighten out the anorectal angle to allow more complete evacuation. you might have to experiment to get the right height. i first tried a step stool, then a large shoe box and finally bought a squatty potty.


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## Hybo (Jun 29, 2018)

Yea I've done all that but if anything is a Bristol 5 or higher I get no urge at all. I have a stool for.my.feet.


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## Hybo (Jun 29, 2018)

And I do as that video.does but again no urge makes it hard to get poop out reguardzless of what it is. I can go 3 days without pooping then I just force something out in fear of being backed up. And it will be a lot of stool that comes out (aka I should have had a urge but I am.not)


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## annie7 (Aug 16, 2002)

sounds like it might be helpful for you to take a stimulant laxative daily like senna, dulcolax or intestinal formula #1, etc--something that will give you the urge and help move things out so you don't get so backed up and have to strain like that..


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## Hybo (Jun 29, 2018)

By.saying the urge you mean diarrhea correct?


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## annie7 (Aug 16, 2002)

no i do not mean diarrhea. by "urge" i mean the urge to poop.


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## Hybo (Jun 29, 2018)

thats my issue I dont get any type of urge. unless its diarrhea or just above it


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## annie7 (Aug 16, 2002)

right--that's why i took stimulant laxatives. they gave me the urge. i also took osmotics so my stool was soft and sometimes a little runny. fortunately i did not get an uncontrollable urge like you get with full out diarrhea--i didn't have to run to the bathroom or anything like that. it was just an urge.

have you tried any of the constipation medications out there like amitiza, linzess or trulance? they might help.

i tried and failed all the C meds that were available back then so my gastro docs told me to take laxatives daily so i could go and also so i didn't develop an impaction.


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## Hybo (Jun 29, 2018)

wow docs dont really help much with this do they


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## annie7 (Aug 16, 2002)

well, unfortunately there's just not much they can do, actually. there's the balloon retraining but that doesn't help everybody. and there's the constipation meds and then laxatives if those don't work. but yes, there's not much the docs can do for those of us who suffer from RH. it's a miserable way to live.


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## Hybo (Jun 29, 2018)

Do you enjoy life better with the bag?


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## annie7 (Aug 16, 2002)

oh yes--it's given me a better quality of life.


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## Hybo (Jun 29, 2018)

How many docotors did you have to see before they offered it to you?


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## annie7 (Aug 16, 2002)

i told my gastro doc that i wanted the bag and he referred me to a colorectal surgeon and the CR surgeon agreed to do it.


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## flossy (Dec 8, 2012)

Hybo said:


> I'm taking 2 scoops of miralax 3 250 docusate sodium it had to be Bristol 6 or 7 for me to feel anything. If it's harder I can't feel it. And I have a fissure so I have to stop forcing it


I've used both of those in the past.

I recommend you try this (click on below link to read):

https://www.ibsgroup.org/forums/topic/239065-finally-a-product-i-can-recommend/

Keep us posted if you try it. You should. Good luck!


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## Hybo (Jun 29, 2018)

I'm still trying to figure out how you get a urge with rectal hyposenitivity.


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## flossy (Dec 8, 2012)

Okay, let me back up here: Do you now or have you ever had chronic constipation, or just rectal hyposensitivity?


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## Hybo (Jun 29, 2018)

Just rectal hyposenitivity. I started with a fissure but it wasn't healing. They did a defegraphy on me thinking I wasn't shitting right but found no issues. Then they did a balloon test. I could not feel it they do me with rectal hyposenitivity. I only know when I have to poop when i have really loose stool.


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## Hybo (Jun 29, 2018)

Sorry I hit enter.to early. My whole life tho i was always constripated. But haven't been since I started taking mirlax and what not. Soft stool but still was straining to poop. Because I don't get the bm urge


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## flossy (Dec 8, 2012)

Well, Annie & both recommended the same thing, but it's up to you whether you try it or not.

I'm sorry but I can't help you much with rectal hyposenitivity, as I am unfamiliar with it.

I did Google it and found this (from this website):

https://www.ibsgroup.org/forums/topic/184754-has-anyone-ever-been-cured-of-rectal-hyposensitivity/

Good luck and keep us posted!


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## vitaminjlr (Jan 17, 2018)

I also have RH and Im waiting to do biofeedback. Im hoping they focus on re-establishing the sensory thresholds through balloon training as I believe this is much more difficult to rectify than PFD! I also have PFD but I think I have somewhat fixed this myself by being aware and trying to relax the pelvic floor. I think however its impossible for your anal sphincter muscles to relax fully unless you get a sufficiently strong urge - which for those of us with RH never really happens! 
For me, I cant get the urge if my stool is too loose - so I try to cut back on Miralax, but then it just stops moving through the colon entirely. Such a difficult balancing act. 
I have read that Sacral Nerve Stimulation can possibly help with RH. 
But yes I have many times contemplated that having a bag would be much easier than managing this!


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## annie7 (Aug 16, 2002)

good luck with biofeedback. hope it helps you!


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## vitaminjlr (Jan 17, 2018)

Thanks annie7! Im also about to start taking Prucalopride tomorrow morning for the first time. Very nervous. I hope this and biofeedback will give me some relief.


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## vitaminjlr (Jan 17, 2018)

https://www.ncbi.nlm.nih.gov/m/pubmed/22418005/

Here is the article about RH and sacral nerve stimulation in case anyone is interested


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## annie7 (Aug 16, 2002)

thanks for posting this! sounds like it's worth a try.


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## Hybo (Jun 29, 2018)

my issue is that I have anal fissures that are hurting like hell and wont heal because I have to keep stoop and plop or diarrhea. so I fear going to the bathroom at all right now because of the pain. They tried botox on me it didnt work, they wont do surgery because it wont work because of whats going on. so Im wondering if they would allow me to get a colostomy for that. I havent talked to them about it yet


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## annie7 (Aug 16, 2002)

i don't know--you'll have to ask your doc about that. surgery of any kind is a pretty serious thing and a colostomy is a surgery of last resort. it has to be medically necessary or insurance won't pay for it. . i have heard of some people getting a temporary colostomy until their fissure heals. then the colostomy is reversed. like i said, ask your doc.


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## Hybo (Jun 29, 2018)

Annie you are a inspiration btw thanks for your input


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## annie7 (Aug 16, 2002)

thanks!


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## Hybo (Jun 29, 2018)

Does this effect any of you when it comes to working?


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## annie7 (Aug 16, 2002)

i'm retired now but back when i was working (and before i had my bag) well--it was hard. i hated going into work feeling all backed up and C. and i had to get up about three hours before i had to leave for work in order to give my laxatives plenty of time to finish working. sometimes the laxatives worked well and then i had a good day but other times they didn't work so well.

it was a relief when i was finally able to retire.


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## Hybo (Jun 29, 2018)

Might I ask what you would take. I'm assuming you are in my boat where it has to be plop or diarrhea to feel the urge?


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## annie7 (Aug 16, 2002)

i took three dulcolax and a capful of milk of magnesia. if you try this make sure to follow the instructions on the dulcolax box (and website) and take them at least an hour apart or you'll get cramping.

i alternated the dulcolax with senna or cascara sagrada so my body wouldn't get too used to the dulcolax.


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## Hybo (Jun 29, 2018)

Thanks. So I am right about the type of poop you had to have?


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## annie7 (Aug 16, 2002)

we talked about this earlier:

my stool ranged from very soft to somewhat runny. the laxatives gave me the urge to go but for me it was not an uncontrollable urge, like you get with D. i didn't have to run to the bathroom or anything like that.


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## Hybo (Jun 29, 2018)

duh im an idiot i forgot we went over that sorry!


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## annie7 (Aug 16, 2002)

oh it's ok.


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## Hybo (Jun 29, 2018)

Annie if we are rectal hypo sensitive with no other outlet issues can we get a j pouch or coloanal pouch? or would that not work for us?


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## annie7 (Aug 16, 2002)

i don't know.

i'm not sure that would work because i would think that you would still have to get an urge of sorts in order to empty the pouch. if you don't get an urge, then you'd just have to go sit on the toilet and strain or push to empty it.

plus you'd have to find a surgeon willing to do that type of surgery on you for rectal hyposensitivity.


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## Hybo (Jun 29, 2018)

its crazy to me that doctors say "you will have to live on diarrhea all the time"


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## annie7 (Aug 16, 2002)

yes, i agree....


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## Hybo (Jun 29, 2018)

What type of food do you guys eat since you have .rh


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## annie7 (Aug 16, 2002)

i'm not quite sure what you mean by this but regardless of what i ate or what diet i followed, i still had rh. there were no particular foods that make it better or foods that made it worse.

however, because i had colonic inertia i found that eating a diet lower in fiber worked better for me than eating a high fiber diet. when your colon moves very slowly, dumping a lot of fiber in there just slows it down all the more. so i found i did better with a diet that was low in fiber. but that's because of the colonic inertia. it had nothing to do with rh.


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## Hybo (Jun 29, 2018)

how is the Prucalopride working vit


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## Hybo (Jun 29, 2018)

So I think I am going to push for a colostomy for this. My only real urge is diarrhea and I'm using mirlax and docalax to get it. Bristol 6 stool isn't really giving me anything at all. I find out that it's there when I got fart. Living life like this really isn't quality.


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## annie7 (Aug 16, 2002)

good luck with everything. keep us posted.


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## Hybo (Jun 29, 2018)

I need some opinions here. my doc is stating that RH is part of IBS or a function bowel disorder. so there is nothing he is willing to do (hes a colo-rectal) should I just go to a GI and talk to them about whats going on now? would they have a better understanding.

(side note my colorectal stated to me that anal fissures will heal with diarrhea, everything that I have read states that diarrhea causes fissures if its constant, which I have no have constant diarrhea to have bowel moments)

So do I find a better doctor or just give up?


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## annie7 (Aug 16, 2002)

oh i wouldn't give up just yet.

yes, you could go to a gastro doc. that's where i started out. with me, it helped to have several tests done to show how bad my problems were. the CR surgeon has to prove to the insurance company that an ostomy is medically necessary. i had a sitz marker study done (two, actually) which dx'd colonic inertia, a defecography--dx'd pelvic floor dysfunction , an anal manometry--dx'd rectal hyposensitivity, pfd and megarectum and a colonscopy --dx'd a long twisted colon. all those tests plus the fact that biofeedback for pfd didn't help and that laxatives, enemas, and even colonoscopy preps were no longer working so well helped convince my CR surgeon that i needed an ostomy.

or you could talk to another CR surgeon and get a second opinion.

good luck with everything...


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## flossy (Dec 8, 2012)

Hybo said:


> So I think I am going to push for a colostomy for this. My only real urge is diarrhea and I'm using mirlax and docalax to get it. Bristol 6 stool isn't really giving me anything at all. I find out that it's there when I got fart. Living life like this really isn't quality.


Before you get surgery, I urge you to try Intestinal Formula # 1. It is a stimulant laxative. I've tried a ton of stuff, it works the best and I recommend it to everyone here.

If you order it don't take Miralax anymore when you start taking it. And no extra fiber at all. The less the better.

I just went through this thread, I've recommended I.F. # 1 to you before. I'm not too familiar with RH, so I don't know if the I.F. # 1 will work well since you have that, but it's certainly worth a try before you get surgery. It will probably take a week or two for your intestines to get used to it, so keep that in mind.

When my CC first hit me I completely fell apart down there with grade four prolapsing hemorrhoids and had to get surgery because of it. If I would have started I.F. # 1 right from the get-go? That would have never happened.

Good luck!


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## Hybo (Jun 29, 2018)

this is what I sent to my other surgeon

I did everything you asked of me and I am still was not able to have bowel moments (ive waited 3+ days). The only way I am getting a urge at this point is via diarrhea (taking mirlax, doculax and other stool softners. or enemas it all has to be liquid for me to get it out. (even bristol 6 stool isnt giving me a urge) and I cant leave my house because of this. (before I was just forcing them out every few days with no urge, thus is how I got this fissure). I have tried everything under the sun to get my body to work. The other doctor that I am dealing with also stated to me that diarrhea will not hurt the fissure (which I can already feel it doing) I am lost right now and I have no hope what so ever. I am bound to the bathroom, This is not a anxiety thing because by all means if it was I could fix it. this is the first time ive ever has anxiety for anything. I just dont know what to do. Its not in my head at all. I wish it was. I would rather have a colostomy bag than fighting with a rectum that doesnt sense stool. thats how bad this is.

I also have been doing physical therapy in buffalo for this but it does doesnt help with my urge sensation. my other doctor basically stated that he is just going to send me off to a gastro.

But I am having a hard time trusting him, I feel like just a number to him and he isnt paying attention to whats going on.

Sorry I am throwing all this at you but I need someone to help me instead of just sending me off to 20 different doctors getting no where. You actually listened to me, and sat there and understood what was going on.


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## Hybo (Jun 29, 2018)

flossy said:


> Before you get surgery, I urge you to try Intestinal Formula # 1. It is a stimulant laxative. I've tried a ton of stuff, it works the best and I recommend it to everyone here.
> 
> If you order it don't take Miralax anymore when you start taking it. And no extra fiber at all. The less the better.
> 
> ...


the issue is that I have to give my self diarrhea all the time no matter what. I dont get a urge with anything else. so thats not going to help me be away from the tolit unless it makes me poop normal poops. RH means that you have little to no urge to poop. some people have 3 spectrum's to work with see this chart https://www.continence.org.au/pages/bristol-stool-chart.html. from what I gather with ann is she could get urges from bristol 5 6 and 7. I can only get a urge from bristol 7 stools. I have forced out other types of stools but there was no urge with it I just Strained really hard to get something out of me. Its a cruel way to live, and my life has been taken away from me because of it. I cant goto work pooping all day. I cant leave my house. I would take a colostomy over this any day of the week. I am basicly forcing myself to have IBS D all day long. even when I skip a day I have to use a enema the following day or the diaha wont come out until after the harder stuff is gone. also I was never constipated, i just out of no where lost my urge sense of my rectum being full.


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## annie7 (Aug 16, 2002)

Hybo said:


> this is what I sent to my other surgeon
> 
> I did everything you asked of me and I am still was not able to have bowel moments (ive waited 3+ days). The only way I am getting a urge at this point is via diarrhea (taking mirlax, doculax and other stool softners. or enemas it all has to be liquid for me to get it out. (even bristol 6 stool isnt giving me a urge) and I cant leave my house because of this. (before I was just forcing them out every few days with no urge, thus is how I got this fissure). I have tried everything under the sun to get my body to work. The other doctor that I am dealing with also stated to me that diarrhea will not hurt the fissure (which I can already feel it doing) I am lost right now and I have no hope what so ever. I am bound to the bathroom, This is not a anxiety thing because by all means if it was I could fix it. this is the first time ive ever has anxiety for anything. I just dont know what to do. Its not in my head at all. I wish it was. I would rather have a colostomy bag than fighting with a rectum that doesnt sense stool. thats how bad this is.
> 
> ...


that's good, what you sent to your other surgeon. hopefully he'll listen to you and agree to do the surgery. you're right--living like that is no kind of life.

good luck. keep us posted.


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## Hybo (Jun 29, 2018)

i just dont get how the other doctor keeps pawning me off to other doctors. hes sent me to 5 other doctors so far.


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## annie7 (Aug 16, 2002)

Hybo said:


> i just dont get how the other doctor keeps pawning me off to other doctors. hes sent me to 5 other doctors so far.


sorry, but i'm a little lost here. which doctor is sending you off to other doctors? it is your C/R surgeon? or your gastro doc?

and who are the five other docs he's sent you off to---gastro docs? other C/R surgeons? regular doctors? thanks.


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## Hybo (Jun 29, 2018)

So how it started was my C/R treated me for a fissure. I kept telling him I have no urge to poop (that I was just forcing them out) normal around my used to be normal bathroom times. he told me that was normal. so I thought I was fine. the fissure wasn't healing (again because i was forcing stool out). again I told him no urge and he said it was normal. he then sent me to a gastro (because he thought my diet was not on point. but I was doing all the high fiber lost 70 pounds thing). I told the gastro what was going on and he ordered defectography (I could not feel the barium in side of me) but it showed no pelvic floor issues. and then I was sent to another doctor to do the anal manomatry. (my original C/R called me up and said "we will run the test for you to see if it was all in your head, if it wasnt then we would just fill you up with stuff to get you going) also I was told to get aniety meds Which the only reason I have aniety is because of this and this has nothing to do with the urge (so that was 2 other docs). confusing I know.

I then went to rochester to find another colo-rectal to see if he would be able to help me. (the one I emailed) he told me that to continue with a high fiber diet and take less miralax (even after I told him I have to have diarrhea to have bowel moments. (so he didnt believe me at first) but did mark down in my log outlet obstruction. the rochester group at the better C/Rs so I am trusting hes going to get a clue of whats going on.


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## annie7 (Aug 16, 2002)

ok--got it. boy, what a saga. so sorry you had to go through all this.

having no urge to poop is not "normal". what on earth was the doctor who said that thinking???

and yes, you're right--straining and forcing stool out causes fissures.

and shame on your c/r for thinking it was "all in your head." it is NOT!

i see where they are coming from about all that extra fiber should help. in theory, yes, maybe--- but in reality--no--doesn't work for RH. no matter how full your rectum is ("filling you up") , you still can't feel it--no urge. and you're right--we need D to get it out. that's the only thing that gives us an urge.

by rochester, do you mean the mayo clinic?

and yes, at least the rochester c/r put you down for outlet obstruction. hopefully he'll pay attention to the letter/email you sent him and listen to you and agree to the surgery.


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## flossy (Dec 8, 2012)

Hybo said:


> the issue is that I have to give my self diarrhea all the time no matter what. I dont get a urge with anything else. so thats not going to help me be away from the tolit unless it makes me poop normal poops. RH means that you have little to no urge to poop. some people have 3 spectrum's to work with see this chart https://www.continence.org.au/pages/bristol-stool-chart.html. from what I gather with ann is she could get urges from bristol 5 6 and 7. I can only get a urge from bristol 7 stools. I have forced out other types of stools but there was no urge with it I just Strained really hard to get something out of me. Its a cruel way to live, and my life has been taken away from me because of it. I cant goto work pooping all day. I cant leave my house. I would take a colostomy over this any day of the week. I am basicly forcing myself to have IBS D all day long. even when I skip a day I have to use a enema the following day or the diaha wont come out until after the harder stuff is gone. also I was never constipated, i just out of no where lost my urge sense of my rectum being full.


I.F. # 1 should not give you diarrhea, but it is a possibility, but not a probability.

Two questions:

1. How long have you had RH?

2. Have you ever tried any stimulant laxatives? They should obviously stimulate you inside, hence the name.


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## Hybo (Jun 29, 2018)

Rochester ny. They are the top surgeons around.

I have had RH I think for about 2 years (i didnt know it was going on until after I got the fissure, your body and mind compensate sometimes and thats what mine did)

I do take stimulant laxatives + miralax to make my stool diarrhea


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## annie7 (Aug 16, 2002)

oh yes--they are the top c/r docs--that's good.


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## Hybo (Jun 29, 2018)

This what my original C/R stated about that anal manometry

The anal manometry test will test you for a " balloon and urge" test. To look for Hirshrungs Disease ( a very rare disease in men your age) . If the test is negative we perform a full thickness rectal fold biopsy to evaluate your muscle layer for nerves ganglion. If the test is positive, you then have "normal number nerve receptors and function". We would then attribute your symptoms to IBS or a functional bowel disorder. Treatment of functional bowel disorder are managed by gastro enterologists, physical therapists and psychiatrists. I hope this answers your questions about the plan.


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## flossy (Dec 8, 2012)

Hybo said:


> Rochester ny. They are the top surgeons around.
> 
> I have had RH I think for about 2 years (i didnt know it was going on until after I got the fissure, your body and mind compensate sometimes and thats what mine did)
> 
> I do take stimulant laxatives + miralax to make my stool diarrhea


Okay, specifically what stimulant laxatives do you take and how much daily?


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## Hybo (Jun 29, 2018)

Miralax and docalax x 3 and then enemas if they don't work. But I have to sit with a enema in me for about 45 to hour in me so that it will be liquid.


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## flossy (Dec 8, 2012)

Hybo said:


> Miralax and docalax x 3 and then enemas if they don't work. But I have to sit with a enema in me for about 45 to hour in me so that it will be liquid.


Okay. Miralax isn't a stimulant laxative, but dulcolax is.

I.F. # 1 and dulcolax do not have any of the same ingredients in them. And because of that saying, "I already take stimulant laxatives" may not mean much. I would like you to try one more different supplement before you attempt to get surgery.

-What does x 3 mean, does that mean you take it 3 times a day, *every day *or no?

-Are you overweight?

Note: Edited for content.


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## Hybo (Jun 29, 2018)

It means I take 3 tabs at once.what does taking a different subliment change the fact that I have to have diarrhea to shit........ Think about it. Yes I am over weight


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## flossy (Dec 8, 2012)

Hybo said:


> It means I take 3 tabs at once.what does taking a different subliment change the fact that I have to have diarrhea to ######........ Think about it. Yes I am over weight


Okay, and how often do you take 3 tabs at once? Is this daily? If not, how often?


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## Hybo (Jun 29, 2018)

So I take miralax daily and stool softener daily. Then on the 2nd day I take the docalax which sometimes I need to use a enema (like I did yesterday) because harder stool was in front of the diarrhea (you can feel it slosh around)


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## annie7 (Aug 16, 2002)

Hybo said:


> This what my original C/R stated about that anal manometry
> 
> The anal manometry test will test you for a " balloon and urge" test. To look for Hirshrungs Disease ( a very rare disease in men your age) . If the test is negative we perform a full thickness rectal fold biopsy to evaluate your muscle layer for nerves ganglion. If the test is positive, you then have "normal number nerve receptors and function". We would then attribute your symptoms to IBS or a functional bowel disorder. Treatment of functional bowel disorder are managed by gastro enterologists, physical therapists and psychiatrists. I hope this answers your questions about the plan.


i forget--did you say your were able to pass the balloon when you had the manometry?

anyway--i would hardly a positive anal manometry--where you can't pass the balloon---indicative of "normal" nerve receptors and function. not beiong able to pass the balloon is abnormal. that's what they told me. i couldn't pass it. i couldn't even feel it in there, even when they inflated it to the max.

i see where he's coming from about treatment of functional bowel disorder is managed by gastro docs, PTs etc. but if they're not able to "manage it", as seems to be your case---that's where the CR surgeon comes in. jusy my opinion.


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## Hybo (Jun 29, 2018)

no I could not feel it


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## annie7 (Aug 16, 2002)

right--that's hardly "normal". normal people feel the balloon.


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## Hybo (Jun 29, 2018)

idk to me its a clear case of i need a colostomy. but getting a doctor to see that is insane. I am living a nightmare right now. ive cried so many freaking times over this. because on one end I have a fissure that the botox ran out and on the other end I have a rectum that isnt working and have to have diarrhea to get in cleaned out. I am afraid to eat because i will have to much diarrhea and im afraid to poop because of this fissure


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## annie7 (Aug 16, 2002)

yes, all you are going through really sounds miserable. i do hope that the surgeon in rochester that you sent the email to understands and lets you have the surgery. have you heard back from him yet?


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## Hybo (Jun 29, 2018)

not yet I have such bad anxiety over this and have a hard time sleeping now. its been going on for months. I have had thoughts of suicide but I just know I cant do it


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## annie7 (Aug 16, 2002)

sorry that you have so much anxiety over this and sorry you're not sleeping. insomnia really makes things worse. i know--i have it. i take prescription sleeping pills.

so sorry you're having thoughts of suicide. i wish there was someone you could talk to about this. you're right-- suicide is never the answer . and it is devestating to those who know you and care for you.

i really hope the surgeon decides to help you.


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## Hybo (Jun 29, 2018)

im going to consoling


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## annie7 (Aug 16, 2002)

oh that's good. i do hope it helps.


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## Hybo (Jun 29, 2018)

I am just caught in a rock and in a hard place. I have no control of whjats going on. and my doctors and playing the "lets toss you to other doctors game" so I feel alone. my family doesnt get whats going on. they fight with me over it.


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## annie7 (Aug 16, 2002)

hopefully the rochester c/r guy will help you.

that's especially hard when your family is not understanding and is unsupportive. hopefully your counselor can help you cope with this.


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## flossy (Dec 8, 2012)

Hybo said:


> no I could not feel it


Do you know why your RH started?

Also, do your doctors give it any chance of it just going away or no?


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## Hybo (Jun 29, 2018)

From.my buff doc
If this is how you feel. You will have to find another surgeon to perform the procedure. I do not perform surgical procedures where the risks outweigh the benefits. As I said before, I do not perform colostomies or ileostomies for functional bowel disorders. These are treated by nonoperative approaches

Sent: 8/16/2018 12:49 PM EDT
Subject: RE:healing fissure

I know all the risks I've talked to my wife about them I know I could die, have erectyle dysfunction everything under the son. Basically I'm stuck In The house all day pooping. I can't go-to work like this. My fissure isn't healing because of all the diahrea. This is bad enough that I'm going to consoling. But by all means don't write off giving me a colostomy or illlostmy. I would rather die on a table than dealing with the nightmare Im living


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## annie7 (Aug 16, 2002)

sorry your surgeon doesn't want to do the surgery.


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## Hybo (Jun 29, 2018)

Just one of them I'm gonna keep trying


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## annie7 (Aug 16, 2002)

good luck. keep us posted.


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## Hybo (Jun 29, 2018)

flossy said:


> Do you know why your RH started?
> 
> Also, do your doctors give it any chance of it just going away or no?


no idea what starts it to be honest. ann any clue?


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## annie7 (Aug 16, 2002)

no.


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## Hybo (Jun 29, 2018)

Ann would it.make sense if I did a sitz marker test. Since.i would fail it to the rectum. That might give me options right?


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## annie7 (Aug 16, 2002)

i suppose it could. ask your doc.

FYI--i'm having outpatient surgery tomorrow so i probably won't feel like being online for a while.


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## Hybo (Jun 29, 2018)

Ok


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## Hybo (Jun 29, 2018)

my full symptoms

I can only get the urge from diarrhea by taking 2 scopes of miralax and 2 to 3 laxatives. (the number of laxatives is slowly going up, idk if they will lose their effectiveness or not).

end up in bathroom any where from 6 to 10 times a day (will try to skip a few days so that I dont have to be in the bathroom, but it makes it worse trying to clear myself out the next day)

I can not get the urge from any other souce of stool. 
Plop (im sorry i dont know what the name of it bristol 6 on the scale) the only way I know that I have it is if I pass gas and it soils my pants I then go sit on the tolit and have to strain it out, (which isnt helping the fissure at all). ive let it sit in me for a few hours seeing it would give me a signal and nothing happened.

enemas are not working, unless I sit with them in me for over in hour and makes all my stool liquid.

I can do digital removal because the fissure, so if I do get backed up I dont know what do to.

I've tried digital stimulation to move my bowels and it does not work.

I've tried suppository and they also do not work (tried 3 of them at once)

I've tried scheduled times to just sit on the to lit and nothing happens without a urge (I did this hoping it was just a mental thing)

I did high fiber lots of greens and fruits but that didn't give me a urge still had to make it diarrhea (lost over 70 pounds).

I tried a bag enema (the big ones). again all that comes out is just water unless I leave it in me for a long period over time (over and hour).

I am eating way less so that I dont has as much diarrhea, because its causing the fissure to reopen and spasm. probably under 1000 calories a day now.

this all started with in the last 2 years. 
Prior to all of this I was doing the valsalva maneuver to get stool out and I would get hard stool out even without a urge. I would always get trapped gas so I would sit on the tol lit and get something out to relieve the gas pain. but clearly that was the dumbest thing I could have done since that started the fissure.

I was constipated for many years in my 20s so I dont know if this played a part in whats going on with me. but back then I had the urge. I would assume if I stopped taking all these laxatives I would constipated.


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## saira (Feb 9, 2014)

Has the doctor given you medication to heal the fissure? Like nitroglycerin or gtn paste? Going in the bathroom too many times will prevent it from healing. I have a fissure also that is driving me crazy.


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## Hybo (Jun 29, 2018)

yea I have had botox and gtn, didnt work. they told me that fissure with heal with diarrhea but im finding that hard to believe


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## Hybo (Jun 29, 2018)

are you guys going everyday? i shit so much since im not constipated


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## Hybo (Jun 29, 2018)

Anne how did you ever travel when you had DIA all the time?


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## annie7 (Aug 16, 2002)

i didn't have D all the time. just in the early morning. i basically had loose stool--not full out D, where you had to run to the bathroom.

i took my laxatives in the evening. i would get up three hours before i had to leave for work and i would go once or twice after eating breakfast and drinking coffee. that's it. i didn't have D all the time. it wasn't a problem.


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## Hybo (Jun 29, 2018)

see I only can have D to get the urge nothing else works


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## annie7 (Aug 16, 2002)

yes, i know. that's unfortunate that your D lasts all day (or most of the day).


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## Hybo (Jun 29, 2018)

Did enemas ever work for you guys they do not for me, and my doctor was stumped as to why.


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## annie7 (Aug 16, 2002)

enemas worked at first for me but then they quit working. not all the water would come out and it would slosh around inside me until i took a laxative to get it out. very unpleasant.

i think that was because my pelvic floor muscles were too tight and they didn't let all the water out. or maybe it was because of the CI.


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## Hybo (Jun 29, 2018)

I tried enemas and it didnt work just the water came out.


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## annie7 (Aug 16, 2002)

so no stool would come out? just the clear enema water?


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## Hybo (Jun 29, 2018)

yea, obviously a little colored water. and I left it in there for 15 mins.


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## annie7 (Aug 16, 2002)

hmmm, that's interesting. are you talking about the small fleet enemas or the big quart size enemas.


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## Hybo (Jun 29, 2018)

ive done both small and a bagged enema


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## annie7 (Aug 16, 2002)

the fleets just work on stool in the rectum.. they are too small to get out the stool that's higher up.

i just saw your earlier post. so it sounds like you did get colored water out.


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## Hybo (Jun 29, 2018)

yea I just tried a bagged enema to see if it was in my head or not for 15 mins and all that came out was colored water. but nothing like when I use a laxitive.


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## annie7 (Aug 16, 2002)

well, an enema really liquifies your stool. much more than a laxative does.

whenever i did a bagged enema, all i passed was liquid stool. at least, that was my experience. i never passed solid stool with an enema--eben when i was impacted.


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## Hybo (Jun 29, 2018)

When I use them its like light colored water comes out and thats it. i would expect it to be darker in color.


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## annie7 (Aug 16, 2002)

i think stool color depends on what you've been eating... ..

about the enema you did this afternoon--well you probably had a bm this morning, right, because of the all laxatives you take? so there wouldn't be as much to come out this afternoon, i would think.

anyway---like you said, maybe enemas don't work for you. they didn't for me. all the water wouldn't come out.


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## Hybo (Jun 29, 2018)

I am going to try enemas for a few days and see if I get backed up or not (then ill.know if they are working). If it makes me pewp less so be it.


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## Hybo (Jun 29, 2018)

Sorry I didn't clean out today Anne so I should have stool in me.


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## Hybo (Jun 29, 2018)

I maybe an idiot I dont think I was holding it in long enough. How long should you hold it in your body and can you do them daily?


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## annie7 (Aug 16, 2002)

i googled it and they say you should hold an enema in for 5 -15 minutes.

idk for sure if they are safe to do daily or not. i've read posts from people on here who say they do that with no problems.

that would be a good question to ask your doctor, if you had a good doctor.


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## Hybo (Jun 29, 2018)

lol had a good doctor.


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## annie7 (Aug 16, 2002)

yeah i know. wish you did.

keep looking. they are out there. i was very lucky to have two terrific gastro docs. like i said earlier, often gastro docs who work at univeristy hospitals or motility clinics are more knowledgeable and proactive than regular gastros.


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## Ricky_Freed (2 mo ago)

annie7 said:


> yeah i know. wish you did.
> 
> keep looking. they are out there. i was very lucky to have two terrific gastro docs. like i said earlier, often gastro docs who work at univeristy hospitals or motility clinics are more knowledgeable and proactive than regular gastros.


Hello Annie.
I want to contact you. I also have rectal hyposensitivity. Feces still come out if you sit on the toilet for a long time. But here are the gases. This is a separate problem. They stopped coming out. Come out 1-2 times a day. Although I can feel them in my rectum when they come out.
When you were hyposensitive did you have trouble passing/feeling gas in your bowels? Have you had bloating?
Thanks


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## annie7 (Aug 16, 2002)

yes i've had bloating..no i did not have problems passing gas. no i did not have pain. i used laxatives in order to go.


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