# Ileostomy for non-relaxing puborectalis and IBS-C?



## AD (Jan 23, 2000)

It's been several years since I've posted here, and I guess it would be fair to say not a lot has changed. I'm just not sure what to do right now or where to seek help or advice.

About 16 years ago, as a result of chronic constipation resistant to other treatments, I started taking milk of magnesia regularly. It works to produce a fast-moving liquid stool. Over the years, I think it has hurt the pelvic floor muscles to pass liquid (which often burns badly from the enzymes and bile). I now need to spend an hour or two (usually before and after breakfast) massaging the abdomen quite aggressively just to get to a point there is no more liquid and gas sloshing and bubbling around. One PT told me I could not injure myself from that, but I sometimes get quite sore from it. Perhaps I should stop at some point, though I don't know when because liquid and gas never seem to stop coming out, bit by bit.

As my doctor confirmed based on my symptoms and a defacography, I have a nonrelaxing puborectalis. Of course I tried the biofeedback and Botox injections, but I get the sense they were hopeless from the start because they didn't deal with the problem of liquid stools. I have of course tried going without the milk of magnesia or taking less. On a few occasions, I have gone on my own, but it's still too wet to form and too little for comfort. The sloshing is less, so that helps. About three times over the years, it has been large and formed and was no problem to pass in just seconds. I know absolutely that the puborectalis issue would clear itself up if I could prevent stool from being liquid by the time it reaches the rectum. At the same time, I can't wait a week for it to get there.

Over the past three years, I have made and cancelled about a dozen appointments with two different surgeons to have an ileostomy done. There have been times when I have felt certain and had no doubts about it, but then they just pop right back up within a few hours.

My colonoscopy report had noted a "large" colon, but the GI doc who did it never even mentioned it. Only the surgeon he referred me to did years later. I had a plethora of other imaging tests and x-rays years later, and it was never mentioned (to me) with those. That all sounds strange to me.

I'm also bothered by the inability to address what I feel is the cause of the nonrelaxing puborectalis, if that even is the proper diagnosis. I've never heard of anyone having it as a direct result of liquid stool, and I've never heard of anyone with it having a harder time with gases and liquids than with solids. The biofeedback and Botox treatments don't address that.

I can't help but wonder if there is there something I haven't tried or a type of doctor or physcial therapist who might be of more help. At the same time, I wonder if the possible maintenance, discomfort, and expense of an ileostomy worse than what I have now, and if so, if a reversal would make things even worse still? These questions and decisions are driving me nuts, and I don't have a clue what to do about anything anymore.


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## wigglesmom (Dec 12, 2002)

I am in the same boat as you and really am not sure what to do. My doctor rec'd trying to reverse my mega rectum by doing enemas nightly in order to reduce the stretching of the rectum so that it would regain sensitivity. I tried for a bit but then gave up as I grew frustrated spending my nights in the bathroom. I am very interested in responses to this post.


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## annie7 (Aug 16, 2002)

HI AD

i'm in the same boat also. i have slow transit, a rectocele, vaginal prolapse and anismus/pfd. i've had problems with constipation for 50 years, getting worse as time went on.

flunked the sitz marker (didn't go at all and ended up in the ER with urinary retention--a liter and half of urine) flunked the defogram and the anal manometry. i'm presently waiting to see if insurance will cover biofeedback and physical therapy . my most recent gastro said i had one of the tightest pelvic floor muscles he's even seen.

currently i'm on both milk of magnesia and stimulants in order to have a BM. and suppositories. after my sitz marker, my gastro told me to "take what i need to go". and AD--i have the exact same problem as you. i can get some stool out but i'm still left with all that miserable liquid stool trapped inside, gurgling and sloshing around, bloating me up hugely. it's so painful. and most of the time i have to wear loose dresses because of the huge bloat. the nurses say i look 18 weeks pg.

and if i don't take all the laxatives, then i don't go at all because of the slow transit. everything grinds to a halt.

i've read and read about all this and there doesn't seem to be much hope. some people have had success with valium to relax the pelvic floor muscles but i imagine you've tried that. and a few others say sometimes nitroglycerin suppositories helped.

and yes i am seriously considering an ileo if the bio/pt doesn't work. i saw a colorectal surgeon in january. he told me to try bio/pt first. i plan to go back to him if it doesn't work.i am so tired of all this. i'm 61 and i want to get my life back.

i have heard of people getting a temporary ileo first to see how they do and then going on to the permanent ileo.

good luck to you. wishing you all the best.


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## annie7 (Aug 16, 2002)

i forgot to mention (been going back through my foggy little brain here to try to remember stuff--lol)

i have also read that some people have success with a type of pelvic floor pt called trigger point release. and/or ultrasound heat therapy. and there is also a type of surgery that is sometimes used called partial division of the puborectalis. don't really know much about any of these but i remember reading about them.


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## AD (Jan 23, 2000)

It's good to hear from people who understand. Admittedly, my situation is not quite as dire as I do not have slow transit constipation. Diagnostic testing would put It in the "moderate" rather than severe category. I can't get a consistent answer what is going on above the rectum. There are periods now and then I do not need milk of magnesia. Moreover, my manometry test was normal. I think that just means the anal sphincters work properly; and that would fit my symptoms.

I long ago stopped using the milk of magnesia daily as I have found not going at all is less painful and offers me more freedom. I'll take it only if I have not gone (or barely gone) in three days. I could probably wait out longer if it weren't for the gas.

I told my surgeon about the partial division of the puborectalis, and he said it was an older method of treatment that was not very effective. I've since read that it's virtually been abandoned as a remedy. I don't know what the procedure is exactly.

Don't discount biofeedback yet. It is supposedly effective in about 80 percent of cases but meets with results only where patients are dedicated and stick with it. I was, and it might have helped with a solid stool. In my case, I think the puborectalis is contracting as an instinctive response to the burning bile and enzymes. That can't really be helped by biofeedback.

As a note to wigglesmom or anyone else considering this, my advice is to thoroughly research all the small details of the procedure (and even actually try on pouch samples and check their cost) if you have not already. There are several key things that I did not find out for years and continue to learn. This is why I'm so hesitant.


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