# Pelvic foor dysfunction



## Terlin (Apr 12, 2013)

Anybody with pelvic floor dysfunction try linzess?


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## annie7 (Aug 16, 2002)

Hi Terlin--

i have slow transit constipation and pfd. and yes, i tried linzess.

for me, the 145 dose didn't work at all so i went to the 290. that worked for a few days--i had very loose/D-type stools-- then i started to get increasingly fewer results from it and increasing side effects--bloating, ab pain---it just seemed to be filling my colon up with fluid that just sat there sloshing around in the transverse colon and would not come out. miserable. and then it finally quit on me altogether--no results but still all those nasty side effects.

don't mean to discourage you from trying it, though. we're all so different in how our bodies react to meds--what works for one may not work for another--so of course, you never know til you try it yourself...i figure everything and anything is def worth a try!

wishing you all the best..


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## Terlin (Apr 12, 2013)

Thanks for your reply, my problem is I can't get the runny stuff out, and my gut is just sloshing around. I also have severe neuropathy wich make matters worse . Do you have a problem getting runny stool out? And what other side effects do you have? Like urinating?


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## annie7 (Aug 16, 2002)

because i have slow transit constipation in addition to pfd, i'm on laxatives per my gastro's instructions--both a stimulant (dulcolax) and an osmotic (milk of magnesia)--nothing else works for me and he has told me to take what i need to go. i can get runny stuff out if i take the stimulant to push it out. but otherwise--without dulcolax-- it just sloshes around in there and makes me miserable. although lately dulcolax hasn't always been working so well so i still have runny stuff trapped higher up in the transverse colon. basically, if i can get it to the rectum, i can get it out. it's getting it there to begin with that's the problem.

urinary problems--the more constipated i get, the more trouble i have passing urine. when i took the sitz marker (colonic transit) test, i didn't have a bm the entire time. by day four i was so impacted i stopped passing any urine at all. i finally went to the ER where they pumped a liter and a half of urine out of me and told me to abort the test and go home and do a clean out.

i also have a moderately sized rectocele. keeping stool runny helps me evacuate past the rectocele.


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## annie7 (Aug 16, 2002)

Terlin--have you had any treatment for your pfd--like biofeedback/physical therapy? i am currently using a low footstool and the "brace and bulge" technique to help with that and hopefully will be going to biofeedback if my insurance covers it.


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## Terlin (Apr 12, 2013)

Yes I've been through biofeedback and things got worse I now have a numb rectum and my sphincter is not cordinating that's why I can't get the runny stuff out, only formed stool.my rectum seems to lock up when it's runny. When they gave me mag citrate I would get some out then I would lock up trying repeatedly. That's why I'm concerned about linzess. Also does the bloating cause you shortness of breath?


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## Terlin (Apr 12, 2013)

Anni another thing is it painfull for you to sit, because of your bloating


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## annie7 (Aug 16, 2002)

yes, often bloating makes me feel short of breath--hard to breathe. and yes, bloating can make sitting difficult. it also makes my back hurt although i have lots of back problems anyway including SIJD.

if you're short of breath, you should probably tell that to your doc (if you haven't already) just in case it's being caused by something else--just to be safe.


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## kalaukia37 (Apr 14, 2013)

Hi Brothers ans Sisters, Kalaukia Again. Have You tried Using the Squatting Potty? And Also What I have Been Doing, is Putting Small Towels On Each Side of my Toilet Seat for Cushion, That Really Helps me. I made My own Squatty Potty With a Card Board Box, IT REALLY HELPS ME. there is a History about this. Japan used to use it, I opens UP The COLON AREA, No Kinking, Easier To Flow. Can You Explain What The Phrase "Brace and Bulge Technique" Is?

Thank You So VERY Much!

Kalaukia37


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## kalaukia37 (Apr 14, 2013)

Hi All, Dulcolax, I Think is a Generic Word for Colice I Think. Colace is a Stool Softner to be taken with alot of Water. My Wife has Worked in Pharmacy for 26 Years. Every Time I have a Question about a Drug, She is Right their for me.









Blessings!

Kalaukia37


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## annie7 (Aug 16, 2002)

Kalaukia--HI and welcome to the board-

the dulcolax i take is a stimulant laxative-dulcolax is the brand name and bisacodyl is the generic name. there is also a stool softner callled "dulcolax stool softner" but that's not what i take--i take the 5 mg dulcolax stimulant pills not the softner.

and yes i use either the lowest rung of my footstool or a cardboard box to elevate my feet while on the toilet and yes you're right--it really helps. it helps straighten out the anorectal angle to allow for a more complete evacuation.

Here is the website with a very helpful instructional video on 'how to empty your bowel without straining' by

a physical therapist in australia named michelle kenway. it describes the "brace and bulge" technique. here's the link to the video:

http://www.youtube.c...h?v=ZqdNEx81d2Q

and her website:

http://www.pelvicexe...ichelle-kenway/

and yes---Blessings!


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## Justhealthier (Apr 13, 2013)

This is for Annie7

I am so new to this - I hope I am doing this right.

Annie7 your story sounds so like mine - I also have PFD tried the biofeedback but I didn't pass it. I had the transit marker test after 5 days they found 23 markers still in my intestines and only 2 passed into my colon.

I was on every laxative possible to no avail - ended up having all but 10" of my colon removed due to the hypo-motility problem. I have an autonomic dysfunction which is causing all my involuntary muscles and nerves to stop working. Bladder, intestines, colon, lungs.

My colon surgery was in 2010. I also had my rectocele repaired shortly after that surgery, I was fine until Dec. 2012 when everything started to go haywire: Extreme pain in upper right quad area of stomach, extreme distended abdomen, and again no stool passing without pressing on my stomach.

Had every test done and my GI doctor said to get a second opinion - which I did turns out I have more motility issues, a bacterial overgrowth with excess amount of fluid in the upper right area of my liver and a narrowing of my colon where my small intestines is sewed together and a rectal prolapse.

I use Amitiza 24mg once a day to keep my stool soft - but now on antibiotics for the BOG. Julie


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## annie7 (Aug 16, 2002)

Julie---so very sorry for all your problems. i can't imagine what you must be going through with all this going on. you are a very strong woman.

i do hope your doctors can help you so you can find some relief!! wishing you all the best...


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## Justhealthier (Apr 13, 2013)

Annie7 thank you for your kind words. I am presently seeing doctor for my heart and lungs and I see my Neurosurgeon on a 6 month basis because I had to have 7 vertebrae cervical fusion from C3-T1. My Drs. are all working together to keep going, I am lucky to be alive. Julie


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## annie7 (Aug 16, 2002)

Julie--that's good your doctors are working together for you. i do hope things get better for you. take care.....annie


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## wigglesmom (Dec 12, 2002)

I am now seeing a chiropractor for my pelvic floor dysfunction and supposed illeocecal valve issues. I'll post on the progress. He did muscle testing and believes that he can help me. Nothing else has worked, so I figured I might as well try this.


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## AIRPLANE (Mar 15, 2004)

I too went to a chirpractor several years ago and at first it did seem to help. I didn't really know about PFD at the time and the subject never came up. I have looked at chiropractors trying to decide if it might be worthwhile trying another one as I see that some offer ultrasound heat therapy for back pain which I hear can be good for Pelvic Floor Tension Myalgia which is often part of PFD. I wonder also if that left side pain and pulling could be Levator syndrome which is another possible issue with PFD.


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## annie7 (Aug 16, 2002)

wigglesmom--good luck with the chiro! great idea! sounds like it's definitely worth a try. that's how i always feel--anything and everything is worth a try--otherwise, you never know if it'll work for you..

thanks for keeping us posted on it. and fingers crossed it works for you.

airplane--wishing you good luck with it as well if you decide to give it another go. the ultrasound heat therapy sounds promising.


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## AIRPLANE (Mar 15, 2004)

Annie,

I'm waiting to see if the Mayo Dr. calls me about the denial letter from my insurance company. If she says there is nothing else they can do for me I might ask her what the cost of the one-week program is for Pelvic Floor Tension Myalgia. The treatment for that is also coded as biofeedback so I'd still have to pay for it myself. I'd think it'd be less expensive than the other two-week program for the retraining. After all, my discomfort isn't solely digestive-related though that's one aspect of it. My logic is that if things weren't so tight and painful then I'd likely have fewer issues with incomplete/difficult evacuation as well as having less discomfort from just sitiing or trying to get comfortable in bed. Makes sense to treat the myalgia anyway before getting into the balloon stuff that they do, especially since it is so expensive and seldom covered by insurance.


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## annie7 (Aug 16, 2002)

airplane--i do hope your mayo doc comes through for you and fights that insurance denial--and wins!

but if she doesn't--oh yes-- your idea about the one week program for Pelvic Floor Tension Myalgia makes a lot of good sense. your logic is great! makes a lot of sense to treat the myalgia first. and that program really sounds like it would help.

although it's still a shame insurance won't pay even for the one week program. and all because it's coded biofeedback. here we are--we're sick, we need help, we pay all this money into insurance. and then insurance won't pay for programs like this to helps us. ...oh don't get me started...

good luck!!!


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## AIRPLANE (Mar 15, 2004)

I am very curious about whether ultrasound could help. Also, over on the International Adhesions Society website there is a patient who says she has had good luck with a new, wearable ultrasound device that seems to be helping but she hasn't had it for very long. Apparently it is a new device that could help with pain due to many conditions- adhesions, IBS, interstitial cystitis. The cost isn't cheap- $850.00 and it can only be ordered by a physician. I don't think it'd be worth the investment until you have actually tried ultrasound heat therapy in an office to see if it'd help.

http://www.kevmed.com


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## annie7 (Aug 16, 2002)

thanks for the link--i'll have to check it out.


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## Terlin (Apr 12, 2013)

Been to my gastro today he says that there isn't anything he can do for my sphincters not relaxing said possiblely a sacral nerve stimulator. But I have been telling him about my nerve pain running from my hips down to my feet. He said its up to spine and bowel people who have said there isn't anything they can do. He told me took keep taking linzess without anything else for a week and see what happens. I have fecal matter all the way to my assending colon. Don't see how this can help. I have been able to push hard a bit with miralax. But said to stop. I have no urge to go and numb rectum he said I'm the only one he seen like this. I have a more difficult time getting out diarreha. Anybody out there with this problem so painfull I can't sit!


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## AIRPLANE (Mar 15, 2004)

Terlin,

Yes- I can relate to some of your baffling symptoms. I have a swollen feeling in my left vaginal/buttock area. While no doctor can see anything, I have had comments from my massage therapist and a physcial therapist about it. My rectum sometimes feels numb but I also can get a lot of burning and stinging both there and on the left side of the vagina. There is a pulling down sensation and I get burning/tingling down the back of the left leg as well.

I've been diagnosed with pelvic floor dysfunction but I sometimes wonder about possible pudendal nerve entrapment (PNE) as well. From what I've read that can cause a lot of different pelvic symptoms. I did see a neurologist last year and I had some nerve testing done but they said they could find nothing. However, from what I've read about PNE, it sounds like normal nerve testing isn't very good at detecting it. It sounds like the best way of diagnosing it is by getting a trigger point injection to see if it provides any relief. And it sounds like there are very few people who are very familiar with this condition. If I had a pain clinic nearby I'd probably try going there but there don't seem to be any around.

I went to a urologist a few years ago that someone told me was good at dealing with the pelvic floor. He spent about 5 minutes with me and quickly decided that I should try the Interstim device which is the sacral nerve stimulator. I did do the one-week trial but didn't notice much improvement and I really didn't like having a sharp piece of something in my lower back. But then this doctor probably had a vested interest in the product because he helped develop it. I haven't heard of any rave reviews about it.


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## Terlin (Apr 12, 2013)

Thanks for your reply I'm loosing hope I'm pretty much bed ridden so bloated it's funny how I can force out a lot of stool but no relief. My gut is just sloshing around. Do you feel like not satisfied after eating, funny I like to eat but the food feels like its sucking down my throat and never feel satisfied. I also can't cough up phlem that's in my throat do you have that problem?


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## Terlin (Apr 12, 2013)

Does any body have a sucking in feeling , like it's hard to exhale or like a belt is around your stomach just below the the ribs


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## Justhealthier (Apr 13, 2013)

No, mine is always the opposite in that area. Mine is always in spasms with distended abdomen around the area of gall bladder and liver.

I am sorry you have that feeling is there anything you can do to relieve it? In my case I have to push on it and/or apply pressure.


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## Mary2001 (Aug 25, 2006)

AIRPLANE said:


> Terlin,
> 
> Yes- I can relate to some of your baffling symptoms. I have a swollen feeling in my left vaginal/buttock area. While no doctor can see anything, I have had comments from my massage therapist and a physcial therapist about it. My rectum sometimes feels numb but I also can get a lot of burning and stinging both there and on the left side of the vagina. There is a pulling down sensation and I get burning/tingling down the back of the left leg as well.
> 
> ...


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## Mary2001 (Aug 25, 2006)

Hello Airplane have not posted for ages so glad to see your post. I have exactly the same feeling of the swollen feeling on left buttock/vaginal area and sometimes a stinging feeling. The stinging feeling I was guessing might be a varicose vein but don't know for sure as it comes and goes. The fullness feeling I have in the left buttock only happened recently and not sure what it is. I have hemmerhoids so might be it. I'm so fed up going for so many tests over the years and being diagnosed with a different thing by everyone I see, the latest being pelvic floor dyssnergia, and I think the medical profession probably tired of me. Have you found out what causes the fullness feeling or had any luck getting help as I remember you used to post here, but I've not checked in for ages. I also have this annoying symptom it's like a gas bubble trapped between front and back passages and is so uncomfortable til released only for it to happen again two minutes later all day every day just such torture I so wish I knew what would help or if any other ibs people experience this or anyone with Pfd disorder. Thanks again for all posts. Mary.


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## AIRPLANE (Mar 15, 2004)

Mary,

Yes- I do sometimes get that feeling of a bubble that is stuck somewhere down there. When it happens, usually it is just after urinating. Then it eventually starts to escape after I've moved around some but yes it is very annoying and often humiliating. My guess is that it could be due to rectocele and/or cystocele. I haven't managed to get any help for those issues yet- I went to Mayo for the 2nd time last year and got a couple more tests but still accomplished nothing. And once again, they wanted me to do their biofeedback physical therapy which I doubt would help but it is a non-issue anyway because it is very expensive and not covered by insurance. From what I've read from other patients who have gone there, no matter what their symptoms, Mayo really seems to want to push this unaffordable and not that effective program on just about everyone. I did manage to get a couple of tests I otherwise wouldn't have but they just supposedly ruled some things out but didn't get me anywhere as far as what to do to get relief. They also didn't want to talk about the rectocele that was diagnosed on one of their tests 6 years ago- wanted to claim that it is was resolved but I'm pretty sure it is still there. My guess is that they didn't want my insurance to know I had one because that wouldn't have helped my case for the expensive biofeedback coverage but they refused coverage anyway, even with a letter of medical necessity. But from what I've read about other patients with these same issues that I have who spent the big money for the therapy themselves, they were very disappointed. Biofeedback alone isn't enough for most of us with pelvic floor and often neurological issues as well. I visit a site called http://pelvicpainrehab.com which has a lot of good information on pelvic floor issues. Also http://savingthewholewoman.com that discusses prolapse issues.


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## Mary2001 (Aug 25, 2006)

Thanks for your post Airplane and for the two websites addresses. The wholewoman website is good for support but I have not found it to help my symptoms ( the trapped gas bubble which i so wish would go away) and just so uncomfortable everyday. I will check out the pelvic pain rehab one as didn't know about it. The biofeedback is something I was hoping to get as I think you get to see your progress on a monitor and relearn the correct muscles to use, but I was told it wasn't of any use to me because I have a rectocele, but I would like to try it anyway, not sure how effective it is. I'm not sure what really can be done for prolapse problems or pelvic floor as they seem to be connected, but the fullness feeling in left buttock is a new symptom so if you find out what it is please keep us posted. I'm at the stage where I'm tired going to medical profession and trying out everything they just don't seem to touch on the problem and you do get tired of going round and round in circles trying to get answers from them or something to bring relief. How do you manage your rectocele and hope it doesn't get any worse. Did you find any help at wholewoman.com Thanks to Terlin and everyone who has posted on this wish I could offer some help, but don't have any answers. Mary.


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## annie7 (Aug 16, 2002)

Hi Mary

so sorry you're still having problems-and for such a long time, too.

i have a moderately sized rectocele as well as pfd, a vaginal prolaspe and slow transit constipation. one of my gastros didn't think the biofeedback/pt training would help me because of the rectocele but both he and the colorectal surgeon told me i should try it anyway. and the gastro who runs the bio/pt program around here did think it might help and was worth a try.

so i decided to try it of course--i'll try anything as long as insurance pays for it--but at this point my problem is the insurance. it's a very expensive program, not always successful and from what i've read and heard many insurances do not cover it, as airplane said. my insurance agreed to pay for the bio/pt evaluation and one visit but that's it and they are still "considering" whether or not to pay for any more visits.

good luck to you. i do hope you can get to try the biofeedback since you're interested in it and it just might help, too. my feeling is, you never know til you try. insurance willing, that is--lol..

i do hope you can find some relief! wishing you all the best. annie


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## AIRPLANE (Mar 15, 2004)

Mary,

I haven't spent a real lot of time on the Whole Woman site but enough to know that these problems are very complicated. I did just read about the reverse-kegel and plan on trying it. Both websites are educational at least in regard to what patients have tried for their issues and it is pretty obvious that methods for proper diagnosis and treatments are way behind the times. I think that these issues are only just beginning to get the respect that they deserve as for too long it was considered normal for women to have pain and problems due to their cycles. I know that when I had cramps at that time of the month and worse gastro issues in my teens I was told that it was normal but of course now the experts are finally, slowly getting around the the idea that maybe it is not normal after all. So there is a lot of learning that needs to happen and it also needs to be addressed in the medical schools before we start seeing the effects in the Drs. offices which will be too late for me, I'm sure.

Yes, that bulging and the trapped bubbles are annoying. After urinating I sometimes try to massage the area a bit before leaving the restroom to see if I can get the bubble to move out, sometimes it helps, sometimes it doesn't. It is probably due to a combination of the prolapse and PFD. For the rectocele, I will sometimes use a non-stimulant suppository lubricated with either an unscented aloe vera gel (Fruit of the Earth) or a petroleum-based product (Hyland's Hemmorex) if the stinging is bad or if I have a fissure. It sometimes helps with incomplete evacuation or can even bring on a BM. I avoid the stimulant suppositories like Dulcolax because they are too irritating and I don't really have constipation even though it sounds like I do. I also sometimes will do sitz baths with plain water which can help heal fissures and also help with burning/stinging. I would prefer to do a full bath which is supposed to be good for a tight pelvic floor but unfortunately we don't really have a good bathtub for that. I'd love to get a nice deep bathtub so I could get coverage up to my chest (like the walk-in ones) but unfortunately it's not my decision to make as far as getting one.


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## Mary2001 (Aug 25, 2006)

Thanks Annie and Airplane for replying to my post. I am hoping to see the corecteal surgeon again in July as she said on my last visit that the biofeedback wasn't useful to me because I had a vaginal prolapse and she offered me a ventral mesh surgery to fix it, but I put the surgery on hold (that was last year) as not sure surgery will work either to make everything right reason being the mesh can cause problems, and have read on the wholewoman websites of surgery failing for prolapse problems or the need to have more sugeries, so its a hard decision to know what to do hence my reson for coming back to ibs forums for support from you all which i wih to thank you for. The wholewoman website teaches a posture that seems to help lots of people with prolapse problems but I cannot see to get any help to relive what is wrong. I am so uncomfortable always feel I need a bowel movement/trapped gas feeling, but I don't have constipation as I go daily, just never feel I'm finished and have the gas bubble feeling and I cannot get it out! Maybe it's the pelvic floor dysnergia causes it. Do you have symptoms similar to that Annie as you said you had vaginal prolapse? I hope your insurance will pay for you and Airplane to get the biofeedback as I also think with our problems that it will give us some idea if we use the right muscles to use the toilet or what is happening. I have read about having the site baths and hope it would help hemmerhoids. I don't have the fullness feeling in the left buttock as much today but I have been in the toilet about five times (think I. Might have something viral to have to go that much) however the fullness feeling is gone so it must be stool or else hemmerhoids get affected from pressure. Sorry if it sounds graphic, but wish I knew too what this fullness feeling could be. I live in UK so don't have insurance but still so hard to get biofeedback and have to travel long ways to get it and wait for ages on waiting lists. I wonder if there is a biofeedback monitor that you can buy, as I thought I saw something online one time. Anyway thank you again and fingers crossed for us.


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## Mary2001 (Aug 25, 2006)

Just to clarify about the gas bubble : I experience the feeling as stated in my post above, but also another type of gas pain. When you drink a fizzy drink sometimes it causes discomfort in the oesophogus like you need to burp, but once you burp you are ok. Well my gas feeling is like that except its at the lower end and it just will not allow me to " burp" and if I'm successful at "burping" it only goes away for two seconds and comes right back. Is that a gas problem I wonder or something to do with ibs or pelvic floor. I so wish I could get rid of that, it's always there no matter what I eat or do. Sometimes I have to jump up and down to get rid of it ha ! ha! but it's not funny as I don't know why it will not come out.


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## annie7 (Aug 16, 2002)

Hi Mary

about the gas bubble--i have gas in general--not a bubble actually, like you describe it, though. mine seems to be mostly in the transver colon and descending colon. and i have problems in the splenic flexure area. this is what i do to help relieve gas--sometimes it works although sometimes it doesn't.

i've found heat and/or massage can help relieve trapped gas. i lay on my back, knees up, with a microwaveable heating pad on my belly, relax and breathe slowly and deeply and massage my belly through the heating pad. i focus on the part of my colon that hurts the most--where i feel the gas is trapped. often i can actually feel something release in there and then the gas comes out.

or you can do a colon massage with your fingers--either massage through the heating pad or without the heating pad. massage the colon starting on the lower right hand side and slowly moving, massaging with your fingers (in a circular fashion) starting on the lower right side, go up the colon, over, across and down the left side. do it for a couple minutes or so..

i'm afraid of that mesh surgery. i've read so many bad things about it. lots of lawsuits about it here in the usa.

i don't think the vaginal prolapse is giving me symptoms. i think my symptoms are from not being able to release enough stool when i go..not sure but that's my impression. i could be wrong. i sure do wish i knew what was going on in there!

about buy a biofeedback machine for home use--i've heard from people who've gone to the mayo clinic here in the sates for biofeedback/pt training that when they are done with it their therapist will sell them a biofeedback machine to take home for their continued practice at home. i'm not sure about buying one online? i would think that it could be tricky to use with having had personal, hands-on instructions with it first but maybe there's a place online that offers support and instructions?? or maybe your gastro could tell you or somehow help with that.

have you tried the peristeen enema system? it's not available here in the states but i've read from people in the uk who use it that it can work quite well to help evacuate stool..

yes i have heard that in the uk the wait time is SO long to get into biofeedback. that's such a shame. what are people to do in the meantime? it's hard.

thanks for your good wishes and yes, fingers crossed for all of us that we can all get some help and relief!


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## AIRPLANE (Mar 15, 2004)

Mary,

I go back and forth about the rectocele surgery too. One minute I think I'd do it because I get so sick of feeling like I have a tennis ball wedged between the left vagina and rectum. That feeling is always there regardless of how well I evacuate. I also don't think my bladder empties entirely. But you're right- it is a difficult decision because I've read of so many issues with it on the Whole Woman site and also the HysterSisters website. If you do have problems after the surgery you can't always assume that the Drs. will follow-up on any complaints. I had that left-side business a bit before my hysterectomy but it got way worse afterwards and the gynecologist who did the surgery wouldn't give me the time of day even though he is listed as a so-called pelvic pain expert. I also discovered a few years ago, after having a plain x-ray, that I have permanent stitches in the lower left pelvic area but nobody wants to consider if those could be a factor. I had always assumed that they would have used dissolving stitches. I also think that, since I already had pelvic floor issues that it was a mistake to have a vaginal hysterectomy but that was the new thing back then. I've heard of problems specific to having it done that way as opposed to abdominally.

For the incomplete/frequent evacuation, I sometimes try taking psyllium but that usually slows things down too much. I recently experimented taking some magnesium with it which I saw recommended by a Dr. online. Supposedly it can help while adjusting to the added fiber but since I have to go to a job I can't experiment as much as I'd like. I have to be very careful with things like magnesium that have a laxative effect because I naturally tend to be too loose. I tried it yesterday and today I'm still a bit on the too loose and frequent side, much like it sounds you are. Since I work the next 5 days I doubt if I'll continue with it.

I do wonder if I should have had the rectocele surgery when it was offered several years ago. The gastroenterology Dr. at Mayo that I saw last year said that they didn't do surgery for rectoceles unless they were very large. I don't think that biofeedback would help much although that is all they seem to offer women regardless of their symptoms.


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## Mary2001 (Aug 25, 2006)

Annie thanks for your tip on how to relieve the gas problem which I will try. I do not have a microwave but I expect a hot water bottle could help just the same. I always think too that there is more stool in that hasn't come out like you experience but when I try to go nothing happens so I'm sort of thinking now that perhaps there is no more to come out and it's just a "sensation" that is giving a wrong signal. Still it's so hard to know. Im not sure what causes the slow transit you have. i think hot water might be good to try and having orange late in the evening, but i expect you ave tried these things and like e exhausted trying to figure out what to help it. How did you get your rectocele diagnosed. I had two proctograms done one in 2007 and one in 2011 and the first showed no prolapse only what appeared like mucosa prolapse. Second one showed pelvic floor dysnergia and no prolapse but I was unable to empty any paste both times. My rectocele was diagnosed from visual inspection, which I'm not sure if it can be diagnosed like that or not as I thought it should show on a proctogram, but will ask again on the next appointment. I am also afraid of the mesh surgery as read some horror stories about it so will probably not have it either. I have not heard about the peristeen so may look into that. I just take moviol every second night which is a fibre drink. There is some very good health benefits from cayenne pepper for the digestive system but its got a very burning feeling to take, however supposed to be very good for many many things so I am going to give it a go too. Thanks for posting and good luck with the biofeedback and let us know how it goes. Mary.


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## Mary2001 (Aug 25, 2006)

Airplane 
Thanks for posting. That left sided pain you have sounds very uncomfortable and not sure what that is. I think it's awful that theses surgeries like hysterectomy do not seem to make everything better. Has no one tried to find out what was causing the pain/feeling like a golf ball wedged between the front and back and how do you cope with that. Strange that the surgery did not help, but to be honest I am really scared about having surgery for prolapse as so many women have still got problems, and its hard that the surgeon who did your operation will not help. I ave heard of exactly the same thing happening over here in UK of women being left to suffer after surgery without getting the help they should. The wholewoman website is really good and maybe they can offer some help as they have programmes about exercises, yoga and wholewoman posture that the women do. I thought too that any stitches put in would be dissolving ones, so maybe that is a factor in your discomfort as doesn't sound right that they have not been taken out. It seems to be that once you have surgery for prolapse you then need to have more surgeries for more organs that weaken and prolapse. That is what they say at wholewoman seems to be happening. I wondered also how your rectocele was diagnosed as I wonder if it can be diagnosed without proctogram. Please keep us posted if you get something to help. There is a book about the pelvic floor by Amy Stein, called headache in the pelvis, it might help with some of the suggestions. Good luck and thanks for your post. Mary.


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## annie7 (Aug 16, 2002)

Hi Mary

my rectocele was diagnosed with the defecatory protogram (defogram).

thanks for your suggestions--tried them --the hot water and orange etc and it didn't help but thanks so much anyway--i really appreciate it--you are very kind i do drink a cup o coffee in the morning and that helps some.

i have reflux now and can't eat any citrus or pepper etc anything hot. good luck to you with the pepper--hope it helps. i've heard that it can. i've also heard that eating kiwi fruit can help people go. it has a very high vitamin c content though so i can't eat it because of the reflux--too citrus-y.

i have mitochondrial disease and i think that may play a part in slowing my transit. also things slowed down quite a bit for me after menopause. and after my last colonoscopy my gastro said i had a long twisty colon so i think that slows things down too.

yes i think you're right about the false signals that we sometimes get that seem to tell us there's more in there when there isn't. i've read that. hypersensitivity--hypersensitive cns (central nervous system) that's what my gastro and also his physician assistant told me as well.

thanks for your post and yes, good luck to you as well!! annie


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## Justhealthier (Apr 13, 2013)

Hi all, Annie, Mary and Airplane - wow your stories are oh so familiar to mine I can touch on it all.

I have had my rectocele repaired 2 yrs ago and it is still good. They did use dissolving stitches and it was quite painful doesn't help having PFD with it.

I also have had a hysterectomy when I was 28 now 57, due to the removal I needed to have my bladder suspended because it kept falling and causing cystoceles I still have a small one but when I get the bubble feeling in it I go to the restroom relive myself then push on the cystocele and it removes the pressure. I also have both urge and stress incontinence which is no fun but neither is the cause of it - autonomic dysfunction of the vagus nerve in my brain.

I have had to have all but 10" of my large colon removed due to hypo-motility issues everything was moving along until 6 months ago more issues including a rectal prolapse. Just prior to having my colon removed my insurance said I had to have at least 8 weeks of rectal biofeedback before they would consider me for the surgery. With people having nerve trouble or PFD and biofeedback is almost a waste of time and money. I did it not fun - costly (partially covered) and it didn't work for me - after the 8 weeks the tech wrote she needs surgery bio did not change anything. They record everything on their machines - my insurance co. insisted on the recordings to "see" how I did not progress. We scheduled the surgery 3 weeks later. Biofeedback does work for some people but not all, one will never know unless they try it.

Am going to the colon surgeon May 30th to schedule surgery to fix my rectal prolapse. I was told by my GI doc he doesn't think there is any more they can do for my hypo-motility of the small bowels mine is also caused by the autonomic dysfunction. At the present time it seems to be working over time on all my involuntary muscles.

Do any of you take the new drug Lizness or something like that? I have been on Amitiza for 5 yrs now and the Dr thinks it stopped working for me. Wants to try the new one but doesn't think it will work with people who's constipation is caused by hypo-motility.


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## annie7 (Aug 16, 2002)

i tried linzess--both doses--but it made me very sick, nauseous, felt full of fluid all the time. it did work a little bit the first few days but then the side effects increased and it stopped working completely. amitiza never worked for me and also made me very ill.

good luck with your appointment monday and your upcoming surgery. please keep us posted if you can--hope it all goes well.

so sorry you've been having so many problems. you've been going through way too much for such a very long time.i do hope the surgery gives you some relief.

take care. wishing you all the best.


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## AIRPLANE (Mar 15, 2004)

Justhealthier,

I don't really have what I consider constipation but I do feel like stuff gets stuck along the way- don't know if it's really due to PFD or possibly adhesions. I tend to be too loose but never seem to feel completely empty. I wouldn't be a good candidate for Linzess or Amitizia because I'd have frequent diarrhea and cramps. The motility test I had at Mayo last year showed pretty fast transit until it got near the end of the colon and rectum.

What I would like to be able to do is somehow regulate my system. I can become constipated if I take too much Imodium. I also take Tramadol for pain which can be slightly constipating but not much, at least not for me. I've tried psyllium many times but it always backed me up too much. I recently read where a Dr. recommended using magnesium- specifically magnesium citrate- along with the fiber. I have been taking magesium oxide (that's all I had on hand but just ordered some magnesium citrate) with it for the past two days and it does seem to keep the fiber from backing me up. I got a little crampy today so ended up taking some liquid Imodium but I didn't get backed up from it. I assume one would have to experiment with the amount of magnesium to find what worked for them. If this works, I might eventually be able to stop the magnesium if my body adjusts to the fiber. I have also heard that magnesium can be good for pain though so maybe I need it anyway.

I know that when you have a rectocele they recommend keeping the BMs soft but I actually think that sometimes it is just as difficult when things aren't firm enough as when they are too hard. Don't know if this is still an issue for you though as you said that so far your rectocele surgery has helped- not sure what symptoms rectal prolapse causes- is it similar to the difficulties with rectoceles? Good to hear that your rectocele surgery has held up and not caused any issues- did they use mesh? Anyway, I just thought that if the other meds didn't work that the fiber/magnesium might be worth a try if you hadn't done it already. I try everything I can think of to get relief.I had never thought about combining fiber and magnesium before.

You're lucky that your insurance paid anything for biofeedback. At least your Drs. are willing to go on to something else since the biofeedback didn't help. At Mayo, if the biofeedback doesn't work then they won't give you any other options. They also seem to think that if the biofeedback doesn't work then it's the patient's fault rather than considering that it wasn't what the patient needed. And the cost of it is highway robbery- currently around $9,000.00+ for the two-week program, despite the lack of successful outcomes from it.

Good luck with your upcoming surgery- hope it goes well and gives you some relief.


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## Justhealthier (Apr 13, 2013)

Airplane - I had to stop the large amounts of fiber I was on because of the SIBO, my BM's were good but not what the doctor wanted. Also because of the colon surgery being attached to the small intestines I kept getting blocked there. I do not get the runs except once a week doctor doesn't know why.

If I used the magnesium citrate it clears me out pretty quickly - I only use it when I am in need of a colon prep. it helps speed up the process.

A rectocele is different from a rectal prolapse. No did not use a mesh to fix my rectocele the doctor actually cut off the extra skin or pocket it made and sewed it up from the inside out. A rectal prolapse is where the inside of my colon is forming a funnel inside my rectum and comes out when I try to have BM's. Sorry for the grossness but there isn't anyway to describe it. Here is a site to help you better understand it. http://www.emedicinehealth.com/rectal_prolapse/article_em.htm#rectal_prolapse_overview

Which Mayo did you go to? I was at the Rochester, MN Mayo last summer for 2 +1/2 weeks because of my lungs. They did so many tests I thought I'd never to able to go home. I learned that 90% of my problems is autonomic and that there isn't much they can do but treat the symptoms.


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## AIRPLANE (Mar 15, 2004)

Justhealthier,

I went to the Rochester clinic- I'm within a two-hour drive from there. I had hoped when I went there in 2007 to get into what they referred to on their website as an intense IBS program. Supposedly, they'd test for lots of things to try and firgure out what was going on IBS-wise and how to treat it. But I wasn't able to get in-maybe they were backed up with a lot of patients? I don't see this program mentioned on their website any longer. I had to press for any type of testing- urogynecology, where I went first for the rectocele,offered no testing although they were willing to operate for it. The gastro I went to there afterwards did schedule the two pelvic-floor type tests. Last year I finally had some motility tests- I've been dealing with all of this since 1984. I suspect that it all started due to heavy lifting on-the-job.

Mayo does have a lot of tests available but they aren't real good at figuring out how to treat what they find. I, and a lot of other patients who went there, feel that they push the biofeedback way too much which would be OK to 'try' if it wasn't so expensive and/or covered by insurance, and if it had a better success rate. Plus it doesn't seem ethical to give patients only one option that most can't even try if they haven't won the lottery. There should be other options. Also, I've read of patients who've gone to Mayo for gastroparesis and somehow they end up being referred for biofeedback which doesn't make much sense to me. I also got a bit irritated when I didn't get to deal with the Dr. I'd planned on seeing but rather a newbie who worked under them. Was a waste of time reading about the different Drs. trying to decide who to see when you end up not dealing with them anyway. The Dr. I dealt with last year was definitely a rookie and spoke very poor English so I didn't feel that the communication was very good.


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## Justhealthier (Apr 13, 2013)

I hear you on the English part - Almost all the PA's and Dr. spoke broken English so hard to understand, I am glad everything came to me in writing. I started out seeing an Internal Medicine Doctor first she then had me go to Neurology, Vascular, Cardiology, sleep center, cough clinic, (I didn't know there was such a clinic). I went to hematology and a host of other places in those 2 and half weeks.

I live almost 6hrs away from there and they wanted me to stay with them in the Pulmonary clinic. That is crazy I told them I'd find a Dr. in my town. They wanted me to have 3 different procedures (out patient) which would have resulted in my staying in the hotel an additional 3 weeks. I had 2 of the procedures done here at home when I got back, the 3rd one is being done tomorrow.

They must think everyone is made of money. They didn't pay for my food or lodging so there was no way I was going to stay any longer than I had too. I went there for one reason and came home with 5 more diagnosis that one here in WI could figure out, now I'm working on treating the symptoms because my vagus nerve can't be fixed.


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