59 years old, got Crohns at 19 and now had a J pouch for 30 years. I also have a stricture that I self dilate every night. Frequent pouchitis the last 10 years. 

A month ago I started having constant urges to go, with little results each time. I always have major gas that I can only totally expel by laying down. But this was worse. Had to limit my diet to compensate. After a month of drs having me add Benefiber to my diet, then trying cipro for pouchitis, I was down 20 pounds and no better. Plus the cipro got me SO constipated I couldn’t take the whole round.  A scope showed there was no pouchitis. So a non-GI doctor Dr in the hospital put me on Bentyl (dicyclomine) for what he said was over active bowel and Rifaximin (Xifaxan) for gas.  My new Gi doctor is just following on with that plan. Bentyl at 2-10mg every ) hours and then as needed for pain. Rifaximin at 1- 550mg every 8 Hours. Plus Prilosec. Taking all for the next month and also trying to function on a low fiber diet is proving difficult. I'm still losing weight, close to losing my job and new marriage or just 2 months. 

Every day is hell. I wake up weak and nauseous. My anxiety is sky high. I'm trying to stay off meds for that. By 2-4 pm, a couple meals and snacks which are low fiber compliant, I’m now bloated, constipated and in pain that nearly sends me screaming to the emergency room till overnight. Have major insomnia and I've reduced the Bentyl to 1 per 6 hours just to be able to think or function. My dr just says stay the course for the month and we'll revaluate. 

I don't really know what I’m asking here other than to desperately see if anyone else has remotely been like this and has some actual wisdom to share. My dr is highly respected but is worn out with me and I'm scared and frustrated. .

I’m ready to just have surgery for an external bag and scrap the j pouch. I got a good 30 years out of it. But the surgeons won’t do it unless I try all medical options first. One of which is some pelvic floor therapy done by a physical therapist. I understand their reluctance. What if I got the external and was still like this?  But honestly, everything just always seems to come back to that stricture in my mind, Even though they say Its dilated right, I still have had to strain my guts out for 20 years to do any good....and still lay down somewhere, bring my knees to my chest and to get gas out. 

Last edited by Zig
Original Post

This sounds miserable, Zig. Have they checked you for a pouch prolapse? A prolapse can act like a stricture that tightens up when you are straining.

They did an mri with contrast injected into the pouch 2 days ago. It took me 3 hours and major pain to expel the contrast. They saw no issues and just say stay the course. This is living hell. 

Bentyl is an anti-spasmodic taken for excessive motility. To get any benefit from it you should take it 45 minutes before any meal. If you are having frequent bowel movements after meals excessive motility/spasmodic pouch is more likely the culprit. If it's not coming right after you eat but consistently it's more likely pouchitis or Crohn's/untreated inflammation.

Sounds like you are a biologics candidate to me.

Last edited by CTBarrister

I used to have frequent movements several hours after meals. It’s been a routine for many years, albeit with lots of “straining”. In fact, I now have a hernia from what I suspect is years of straing so hard to evacuate my pouch. (No....they ruled out the hernia being involved in this bout as it doesn’t intersect any bowel and isnt strangulated or threatening) 

 

But now what I have 5 weeks into this is tremendous pain through my abdomen, stomach and near my scar where my temporary stoma was years ago. Usually not long after I eat breakfast and lasting most of the day.  My whole stomach is literally sore to the touch from it. I struggle all day to evacuate anything, then at night when I finally fall asleep over my insomnia, I’ve had to start wearing diapers to catch the leakage.  My anxiety is to the point that my general doctor has me on Lexapro.  Yet my GI dr says, stop asking us questions, follow the plan, I’ll have a virtual visit with you next month. Scans and scopes find no explanation. I’m confused why I’m even on bentyl since it would seem to make me more blocked up feeling. I dread mealtimes  so much. Just the thought of good is repulsive. 

It has been suggested that I take Visbiome. It just came yesterday. But It seems like everything I take has some “other” side effect. And if a very strange concept to me. So I’m really nervous about taking it. 

Anyone have success with it? 

Last edited by Zig

Would a laxative like Miralax offer me any relief or cause me more pain? Right at this second, the pain and bloat is swelling across my stomach and if I can get a dr on the phone, he just says take a bentyl. 

Last edited by Zig

I hear you Zig, and have some hope to offer. Had my Pouch put in in 2013 and have had chronic pouchitis ever since. Pain has been excruciating and constant. Sleep has been horrible. Bathroom trips 30+ trips over day. If I even smelled food I would need to run to the bathroom to avoid an accident.  

I tried pretty much every type of medication. Until a couple of months ago I was on Humira, Amoxi-Clav, Rifaximine, Codeine Contin, Percocet, Wellbutrin, Esomeprazole, and Prednisone all at once and I was in agony. I started looking at a permanent iliostomy which I really didn't want to do because my experience with one during my pouch construction was awful. I was about to go on long term disability, feeling pretty much at the end of my rope. 

I already tried Humira for about 18 months with no real success and Remicaide only worked for a couple of weeks before I developed antibodies to it.  I didn't have much hope for biologics but to be thorough I tried Entyvio starting about 10 weeks ago and it has changed my life. I have gone from taking 8 medications down to just Entyvio and occasionally Percocet for pain. My urgency is drastically reduced, my sleep is infinitely better, my energy is up and I am feeling better than I have in years. I still have pain and some urgency but it is so much better now and I understand that Entyvio doesn't  take full effect for up to six months so I am hopeful. 

The main reason I'm posting isn't to sing the wonders of Entyvio, it is mostly to say I understand where you are coming from and how difficult and depressing it can be. If there are any meds you haven't tried I would encourage you to try them and with some luck maybe you will find the one that will finally work for you and get you started on the road to recovery. 

Best of luck and be well Zig.

Thanks concertboy. I’m glad you found something. My docs don’t seem to want to go further than antibiotics and probiotics. However since my first post, I had a mri done where they injected gel into my pouch, had me bear down like evacuating it. At the very end they wanted me to just basically poop it all out on the mat in the mri so they could monitor it. I couldn’t. No way. Once I stood up, I went to a toilet and could get it out. But I was still painfully working it and the air injected along with it hours later. 

So they’ve sent me back to where I started with the surgeon. He’s back to pushing for pelvic floor therapy as trying all non surgical options before the finality of an external bag. I see the other post here about that and it sounds like a long shot to me. 

Hi Zig, after all you have been through with your doctors, with no relief in sight, esp. from your current ones, maybe seriously consider finding new specialists to help you? (Depending where you live, you could even search this forum for recommended doctors.) I'd be totally frustrated by now. Best wishes to you!

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