Hello fellow j-pouchers, this is the first time I've posted but I've been reading the really helpful posts here for awhile. I had my surgery 30 years ago in Boston and after a rocky start have successfully managed with a combination of Metamucil once a day and 1 or 2 capsules of loperamide daily during all that time. Then in February something triggered an allergic reaction to the loperamide after all this time--intense itching and a rash. (It's definitely the loperamide - it's the only med I take, and other causes have been ruled out.) I've been trying to manage by increasing my fiber intake and switching to Konsyl but the results haven't been consistent. I'm experiencing night-time incontinence and leaking during the day. It's really affecting my dignity and sense of well-being. Even leaving the house creates worry and requires careful planning. Thank goodness I am working remotely right now but will be expected to return to in-person work by September. To top it all off the surgeon who followed me for years retired in 2018. I've fortunately found a gastroenterologist at a teaching hospital with an IBD clinic who has started working with me. I've got a pouchoscopy scheduled for next week. She prescribed lomotil but I had an allergic reaction to that, too, and I can't take Pepto-Bismol because of allergies to salicylic acid, which is a key ingredient, so my options are really limited medication-wise in terms of meds that can slow down the gut. I know there are pouchers out there who don't rely on meds at all. I would so love advice or tips about how to manage this so that I can regain some quality of life and control. I am also going to ask the doctor for a referral to a desensitization clinic, but in the meantime I would so welcome ideas, words of wisdom, and hope, too. After 30 years of doing great this is so discouraging. Thank you so much, and apologies for this lengthy message!
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Hi Portia,
So sorry about your allergy - I have the same allergy. I am allergic to pain medicine and Imodium and Lomotil. It makes me itch unbearably! Unreal itching. I have not even had my takedown yet, because we spent months trying to slow my gut down - after my second surgery. I am going for my takedown with no bowel slowing safety net on May 6th. I am scared. I did go through a desensitization with a top allergist - but it failed for me. I wonder over time if your gut will become adapted to a life without the medicine. How long has it been since you stopped the bowel slowing meds?
Hi, Doug,
Thank you for your reply and for sharing your own experience. Really appreciate this!
I stopped the loperamide in mid-February. I'm sorry to hear about the worry you're carrying with you. I do know of people who have never needed loperamide or lomotil, so I do know that it can be done, so please don't lose heart. Hopefully someone can offer you and me suggestions that will allay your worries and offer us both some encouragement. In the meantime, have you shared these concerns with your medical team? What is their plan for supporting you and helping you manage given your sensitivity to these medications?
Thank you again for sharing this, Doug
I did extensive research with my medical team - we tried pain meds - they slow bowel - but I am just going to use fiber - no great plan
@Portia The symptoms you describe are consistent with pouchitis, which can smolder for years. Your upcoming pouchoscopy may offer very helpful information in this regard. Have you ever tried a course of Cipro or Flagyl? It would be nice if that fixed you right up.
Some people are helped by cholestyramine or colestipol. These don’t slow the gut, but they seem to work differently than Metamucil. Another possibility would be to try some of the IBS medications to see if one of them calms down your gut.
It sounds like you don’t yet know what particular ingredient(s) are provoking the allergy, which makes things a bit hit-or-miss. Plenty of folks who find Lomotil insufficient (or, in your case, problematic) use some other opiate to slow the gut. The classic one for this is Tincture of Opium, which is hard to obtain, but it often works quite well. Other opiates (e.g. codeine) can do the job, too. The obvious issues with opiates apply, including fraught conversations with prescribers.
Good luck!
Scott, really appreciate you sharing these thoughts! Funny you should mention Cipro - my doctor has started me on a course. Pouchitis never occurred to me because in 30 years I've never had it, but there's certainly a first time for everything. Hopefully this will produce results.
It's good to know about cholestyramine and colestipol--I wasn't familiar with either but I'm glad to hear that there may be options. (I really wish I could use one of the opiates--I have allergies to that whole class, including codeine.)
Thanks for these ideas.
And Doug, I will be sending good thoughts your way.
I hope the Cipro works for you. Maybe - hopefully it will just take some time for the bowel to adjust off of the bowel slowing medicines
Good luck with the Cipro! It often works surprisingly quickly. Another way to slow the gut (particularly the stomach) is with a fatty meal. The usual way to take advantage of this to reduce nighttime leakage or incontinence is something like a spoonful of peanut butter at bedtime. I don’t think this would work all day, but targeting bedtime helps some people considerably.
It’s possible (though by no means certain) that you’ve had mild pouchitis longer than you imagine, masked by the loperamide. Pouchitis wouldn’t develop just because you stopped taking a bowel slower.
Scott, I can't begin to tell you how much I appreciate the great suggestions and the encouragement. That was a good point about pouchitis, too - I just started the Cipro so we'll see how it goes. Fingers crossed! So grateful that you took the time to pass along the wisdom of your experience! 