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Hello All-

It's been a while since I've posted and I could really use the collective experience out there! I'm just about 23 months post pouch creation surgery, 20 months post take down and can't stop pooping! My surgeon, after trying everything in his bag of tricks, has thrown up his hands and sent me back to my GI. My GI has rerun standard battery of tests (c. diff., gastric over-population, gluten allergy/intolerance, lactose intolerance and about 6 others which I don't ever remember) and found nothing significant except a moderate lactose intolerance.

I have intermittent periods, once or twice a week, which last anywhere from 8-16 hours when I will have a BM every 3-5 hours. I could live very happily with that frequency but then the other shoe drops and I'm back to my new normal, 20-30 trips a day. I'm currently taking 2 lomotil, 2 loperamide and 16 drops of tincture of opium 4 times a day. The opium seems to have brought the pain and crampiness which accompanies my BM's under control, but doesn't seem to have made much of a dent in my motility.

If anybody out there has any suggestions, I'm all ears.

Thanks in advance for your help!

Trevor
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You can take 2 Lomotil (2.5mg) four times a day. Im not sure if this is recommended with the immodium at the same time so check with your doctor. Also, try and lessen your food consumption mid to late afternoon as this seems to help lesson my trips later in the day. Avoid greasy foods,dairy, chocolate, alcohol, fiber and vegetables also to see if this slows down output. Aside from that have you been checked for pouchitis or cuffitis with a scope? Both of these will increase your frequency and cramping as you are describing and antibiotics often help with this problem.
You may have tried more things than you list in your post, but in any case two additional things come to mind:
1) Metamucil or Konsyl to thicken things up (if that seems like it might help). With your frequency powder would disperse better than capsules.
2) Perhaps a trial of Cipro? I'd be in the same shape as you are (more or less) if I weren't on Cipro all the time. The extra-good news is that it seems to start working within a few days for most folks if it's going to work.
Seems like you are maxed out on the bowel slower dosing (lomotil, Imodium, and tincture of opium). the only other suggestion I might have in that department is Sandostatin, an injectible hormone.

I agree that even without proof of bacterial overgrowth, antibiotics are worth a try.

Irritable pouch is a possibility, and antispasmodic and tricyclic antidepressants could help that.

Otherwise, has Crohn's been ruled out? You may need camera pill endoscopy for that determination.

There are a small minority 5% or less that simply are pouch failures, and sadly, ileostomy is pretty much the last resort. After 2 years things should have improved for you, unless there is a yet undetected problem (like Crohn's). There is a possibility of continent ileostomy too.

Jan Smiler
I noticed the difference when I started taking a tbsp of citrucel 3 times a day but not with the suggested eight ounces of water. What works for me is to have a water bottle filled up then just spoon the tbsp in your mouth and just wash it down with as much water as needed then don't drink fluids for a little while. Citrucel is not that bad doing this with because its the best tasting one out there in my opinion. I'm not sure how close you have a health food store but I go to one to get my probiotocs and the people there are usually well trained on what works best for your digestive system. Maybe if you have a store close by you could give that a shot they might have some suggestions for you. I would suggest if your diet changes and additions to fiber supplements don't work that you seek medical help but not until you have done as much research as you can about way to improve this. Sorry I've learned over the years to become my own advocate because its hard to trust drs these days. Good luck.
Hi Trevor.
It may help if you keep a food diary of everything that you eat and that means everything.
I still find that even after 30 years of having a pouch there are certain foods that if I eat them in a few hours my butt will being trying to turn itself into a Volcano so I avoid them or I will be punished something severely for my lapse.
Try one food at at a time and see how you go.
Regards from Australia.
John.
I know how frustrating that is as my situation is similar. I have tried some things mentioned here, metamucil type product, cipro, food diary, all have helped a bit. And peptobismol can help as well. I think the world of Dr Shen at Cleveland Clinic, the pouch specialist, you might want to see him. Best of luck. What we have found is that everyone's system is a bit different so experiment.

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