A little bit of background...I have had a J pouch since 2002. While I was very lucky to get the surgery, I did not have much help with my pouch after that. It boiled down to the fact that for a long time, I didn't have access to insurance and at times, there wasn't even a gastro in my area for me to see. Around 2022, things finally changed and I had my first visit to a gastro in a long time. He said my pouch didn't look too great and was very surprised when I told him that I had been self managing my pouch for years. I didn't think anything was really wrong because I felt so much better than I ever did before the surgery, by the time I saw the Dr. in 2022, I was going to bathroom about 10-12 times a day. Sometimes leaking at night. After my first visit, I was prescribed Humira which did a lot of good to clean up my night time leaks, but not much else. About a year after starting humira, the doc pulled me off of it and started me on rinvoq (been on rinvoq for about 9 months now). He did this after a colonoscopy revealed a lot of stuff he didn't like. Around this time, I started noticing that on certain days, I'd have to strain while going to bathroom. It would feel like I really needed to go but when getting on the toilet, nothing would happen. Eventually it got better and then it would get worse again, even when following a good diet that I know would work for me. I have another appointment coming up with my doc soon but I know my symptoms are not good at all. These days I'm going between 5-10 times a day and most of the time, I need to strain to get anything out. I know enough to know not to strain but I'm incredibly worried about where I'm headed. I know tenesmus is sign of pouch failure, and even though it's the only symptom of failure that I have, I know that I'm not in good shape. I'm keeping a very mediocre diet with no sugar, light dairy and no heavy spice (my biggest triggers) which seems to be helping me go during the day. Hopefully I'm over reacting but I'm not sure what to think since every situation is different. Has anyone been in place similar to me with this? any advice or support would be very appreciated, I'm feeling very alone in all of this right now.
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There’s really no reason to jump to the idea of pouch failure at this point. It’s natural to experience pessimism when things aren’t going well, but there are plenty of treatment options still available. Difficulty emptying can be a sign of a bunch of things, but it can help to try to work out whether your pouch is actually full when you’re trying hard to empty it. For example, a pouch inlet stricture can feel like a full pouch, but the actual fullness is behind the stricture where it can’t be pushed out. It’s good that you’re seeing your doc again soon - I’d suggest sharing your concern with him so he’s clear on the urgency of the matter.
I am not sure if this would work in your case but a pouch redo might do the trick. I have spoken to people on here that have a had a pouch redo and they are doing great! But again, just because it worked for them does not mean it will work for you but maybe its worth a try. Some people are not interested in a redo and just jump straight to a bag and they are happy as well. That choice is yours.
I think my advice might be jumping the gun to quick, I would ask my surgeon/gastro what other options there are before talking about pouch redos and if they do not say anything, definitely get a second opinion- after that, I would start thinking pouch redo or maybe a stoma. I would explore other options fully before making surgery a possible option.
Give us updates on everything and I will keep you in my prayers.
I would look into other treatments for your condition and possibly get a second opinion from a doctor who specializes treating pouch problems. In my case, the J pouch that I had for 30 years had to be removed for medical reasons. I strongly did not want a bag with its associated issues. I did my research on options and was fortunate to get a BCIR, a continent ileostomy that does not require having an external bag. I published an article in UOAA's magazine entitled, "Researching My Options" that might help you with your situation. This article can be viewed on the Quality Life Association's web site (www.qla-ostomy.org) under the Ostomy Options and Education tab. I hope that you get a good resolution to your situation.
@BillV posted:I would look into other treatments for your condition and possibly get a second opinion from a doctor who specializes treating pouch problems. In my case, the J pouch that I had for 30 years had to be removed for medical reasons. I strongly did not want a bag with its associated issues. I did my research on options and was fortunate to get a BCIR, a continent ileostomy that does not require having an external bag. I published an article in UOAA's magazine entitled, "Researching My Options" that might help you with your situation. This article can be viewed on the Quality Life Association's web site (www.qla-ostomy.org) under the Ostomy Options and Education tab. I hope that you get a good resolution to your situation.
What medical reasons did you have that you had to get your pouch removed???
Recurrent high grade dysplasia and a malignant polyp in the anal canal.
@BillV posted:Recurrent high grade dysplasia and a malignant polyp in the anal canal.
Omg!!! Sorry to hear that! You definitely did the right thing!!!
I wonder how in the world you got dysplasia in the pouch, that sounds scary!!! And the polyp too!!
The dysplasia and polyp were right by the anal sphincter and not in the pouch itself
Guys, I just want to say thank you for all the replies. I've never actually had a support group like this to talk to and it really helps. I have an appt with my gastro tomorrow so hopefully I'll get some answers and maybe even a solution. I'm looking into the things everyone suggested and I'm becoming more educated on when pouches go bad and treatments for them. I'll keep you all updated. Thanks again for the support and kind words.
@BillV posted:The dysplasia and polyp were right by the anal sphincter and not in the pouch itself
Why did they have to remove the pouch since those issues were not in the pouch???
@RustyShackleford posted:Guys, I just want to say thank you for all the replies. I've never actually had a support group like this to talk to and it really helps. I have an appt with my gastro tomorrow so hopefully I'll get some answers and maybe even a solution. I'm looking into the things everyone suggested and I'm becoming more educated on when pouches go bad and treatments for them. I'll keep you all updated. Thanks again for the support and kind words.
PErfect! Let us know know how to tomorrow goes!
UPDATE: So I went to my GI regarding all my symptoms and he decided the most likely problem was that I have a stricture (excellent call, Scott F!) and a very bad case of pouchitis. He gave me some antibiotics and mesalamine suppositories. I have started taking both in the last 2 days with some signs of progress (mostly on the pouchitis side). I was told the mesalamine can take some time for the effects to be fully felt so I'm not expecting anything amazing soon. I'm on a basic diet but I'm eating a lot and the bowel movements are getting better(ish). I told my doc about my concerns for the j pouch failing and he said I'm getting jumping to conclusions but it definitely is a possibility if things go really wrong. He said I have a lot of treatment options before we get to that point so I'm certainly feeling more confident. If anyone has any tips for taking mesalamine suppositories, I'm all ears because these things are a pain in the ass (pun definitely intended!)
Again, I want to thank you guys for the solid responses and kind words so far. Having a support group like this is something I really needed for a long time and thankful to have found this place.
---Rusty
I’m glad you had a positive visit with your doctor. Once you get the inflammation under control he’ll probably want to take a look to see if there’s a stricture that needs dilating. Can you be specific about what problem you’re having with the suppositories?
Hello,
I take mesalamine suppositories to prevent recurring Cuffitis. It can be a challenge to time it correctly for insertion. Ideally you want it to stay in for 4 hours, so my best time is usually after my morning shower. Most other times during the day, my pouch and bowels are active and the first BM will push it right out.
Also, I have found that mesalamine is preventative for me and will not induce remission. A short course of hydrocortisone suppositories will knock out the inflammation within 7-10 days and then I revert to the mesalamine for maintenance.
@RustyShackleford posted:UPDATE: So I went to my GI regarding all my symptoms and he decided the most likely problem was that I have a stricture (excellent call, Scott F!) and a very bad case of pouchitis. He gave me some antibiotics and mesalamine suppositories. I have started taking both in the last 2 days with some signs of progress (mostly on the pouchitis side). I was told the mesalamine can take some time for the effects to be fully felt so I'm not expecting anything amazing soon. I'm on a basic diet but I'm eating a lot and the bowel movements are getting better(ish). I told my doc about my concerns for the j pouch failing and he said I'm getting jumping to conclusions but it definitely is a possibility if things go really wrong. He said I have a lot of treatment options before we get to that point so I'm certainly feeling more confident. If anyone has any tips for taking mesalamine suppositories, I'm all ears because these things are a pain in the ass (pun definitely intended!)
Again, I want to thank you guys for the solid responses and kind words so far. Having a support group like this is something I really needed for a long time and thankful to have found this place.
---Rusty
Glad your doing better, keep us updated 
@Scott F at first I was having trouble with actually keeping them in once I had already inserted them but I've since gotten the hang of it and I've learned that a small amount of leakage is somewhat normal and not too much to worry about. As I've been taking them, I'm doing better with it though
So glad you saw dr and are addressing the problems. Good luck with your treatments and recovery!