Desperate! Bentyl (dicyclomine) and Rifaximin (Xifaxan) Low Fiber diet

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.

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? 

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. 

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!