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I am three months post takedown surgery. Everything has been great, with the exception that I have tight Pelvic floor muscles I had to do pt and biofeedback for. I was having to strain a lot and then being in pain afterwards. But after the pt that resolved for the most part and I was doing well for a month.

Then earlier this week I started to notice slowly, I was having spams return when emptying my pouch, then the soreness started after, then I started having to really strain again to empty. After about 3-4 days of this I was in really bad pain during and for hours after a bowel movement. The pain being around the anus and sometimes all the way up to my tailbone, a deep aching pain and throbbing.  None of my techniques or exercises I learned in pt were helping at all nor was heating pad, sitz baths, Tylenol etc.

It got so bad in the middle of the night I went to the er. They did a rectal exam and ruled out stricture and fissure. I had a ct scan that showed nothing but some enlarged lymph nodes and mild hazy fat stranding near the pouch, but no inflammation in the pouch itself.

I saw my surgeon and he said based on everything I’m saying and he’s seeing, he thinks it’s a muscular issue and sent me home with flexeril. It’s been about a day and half, and these have helped the pain and spasming by about 80%, so at least I can function.

However my concern is that it hasn’t helped the emptying issues. I’m going less than usual by about half and when I do go I still have to push and strain quite a bit, and don’t get nearly the volume of stool as before.  Then I can feel the pouch isn’t all the way empty. I tried Metamucil and that made things worse. I stay plenty hydrated, and when I do go the stool is ideal constituency not too hard or too soft

I feel stuck and I don’t know what to do next. They practically threw me out of the hospital and left me with many unanswered questions, and my surgeon isn’t in today and then it’s the weekend.

Any thoughts on what might be happening or what I should do next? Is this just still early on stuff? I’m feeling just so down and discouraged

Edit to add I asked is this pouchitis due to the inflammation near the area, and they said highly unlikely because I don’t have increased urgency, bathroom trips, leakage, or any of the other typical symptoms of pouchitis and it wouldn’t come with that amount of pain, so they would not even let me try antibiotics. I asked about a scope and they said not needed.

Last edited by Cb2009
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The usual treatment for spasmodic pouch isn't Flexeril. It's anti-spasmodic meds like Bentyl and Levsin. Are you treating with someone who is experienced with J Pouch treatment issues? I had similar issues after takedown and Bentyl and Levsin taken 45 minutes before meals resolved them. Whether a component of your issues may as well be due to pouchitis is unclear, but the sense of incomplete evacuation was something I had with pouchitis, not spasmodic pouch, which I had soon after takedown and is very common.

Last edited by CTBarrister

Thanks for replying! I don’t think it’s spasmodic pouch because I don’t have to go right after eating and I never get rapid fire. Quite the opposite, I struggle to get anything out. Then I get so sore from the straining and pushing that the whole area just aches and throbs, more as the day goes on.

So I think his thinking is flexeril will settle the pelvic floor muscles so they don’t ache and throb but I’m still concerned why it is happening in the first place and even with taking the meds to relax the muscles (even though it has helped the pain and spasm-by the way the spasm is in the anal area not the pouch itself), I still have to strain and push and it still doesn’t feel empty.

This may not be what you are dealing with but I will share a similar issue that developed @ 3 or 4 months after my takedown. I also started really straining to pass stool. In addition to the difficulty and the soreness, it always felt as though I had to go, so many unsuccessful trips to the bathroom. There was blood from the irritation and also some degree of leaking night and day.

Ultimately my problem  was determined to be caused by mucosal prolapse.  Loose folds of mucosa sort of occlude the opening and is made worse by straining. What did pass was thin strands often with ridges. There is bacterial overgrowth associated with this, so antibiotics help.

This issue can be identified if an endoscopist is looking for it and uses air during the procedure to simulate pressure. Mine was an 80% occlusion.  The diagnosis was confirmed with barium defecogram.

I also had a functional issue but did well after an endoscopic procedure where the loose folds were banded.  I opted to defer biofeedback.

I'm one year post take-down and recently have noticed some of the same issue  again but much milder. I suspect when I am scoped again later this summer or early fall, the doctor will band some more.

Before the banding procedure I also tried psyllium and found it made things worse. But after the banding I returned to with great success.

CT Barrister's  question is important. The surgeons don't all seem to manage the pouch issues consistently. There are some gastroenterologists who specialize. Sometimes you have to travel to find one. But it makes all the difference.

Last edited by AMB

Cb2009, I have been trying to resolve the same symptoms since my take down in 2017. I had my pouch created at the Cleveland Clinic but since I live in Va I have had local GIs.  Because of my anal pain and difficulty emptying I followed through with 5 months of PF therapy with biofeedback, starting about a year after take down. I had good progress but I could slip back into straining usually because of gas and the cycle would repeat. I finally decided to go back to Cleveland for some answers. After a pouchoscopy, defecagraphy and manometry test, the primary discovery was from the manometry test. The top end of a “normal” sphincter squeeze is less than 100 on the scale. My result was 291. It is theorized that I have over-developed sphincters and pelvic floor from my year with the ileostomy and my constant clenching to stop mucus leaks. I was advised to go back into therapy to learn how to relax those muscles so emptying is easier and more controlled. Easier said than done.

AMB- thanks for the input! Was this something you asked them to look for, or you just had a routine scope and they found it? I’ve never heard of this. Are you in the US?

Jfill21- I asked to have some more testing done such as a scope or the other tests you mentioned and was told it wasn’t needed at this time. Maybe I need to go somewhere like Cleveland for another opinion. I don’t have a gi currently and it’s so hard to get in with my surgeon. Since you were traveling from hours away, did they do all your testing in one day? Who were you scheduled with, a gi? I also improved greatly after pt and apparently have way backtracked because this pain and throbbing is way worse than it was the first time it sent me into pt 😔 The muscle relaxers take the edge off for sure but they have side effects, and when I stop taking them the problem will still be there!

Yes, CC will try to schedule adjacent appointments for out-of-towners. My pouchoscopy and defecography were a day apart, and my wife and I stayed in an Airbnb. CC has a team of medical doctors and specialists who participate in CC’s “pouch clinic,” that also includes nutritionalists and mental health therapists. The nurse practitioner who assists my new gastroenterologist has a j-pouch and my nutritionist has Crohn’s. Made it much easier to discuss issues and talk suggestions.

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