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7 replies

Ongoing Pouchitis/Cuffitis.. what is the best next move?

O oonjaMember
So I'll try to keep this relatively short. I had my takedown in April 2013. I'd had a scope in July showing inflammation primarily in the cuff and started on Buedesonide again, with Flagyl as needed. (Also Lomotil, Fiber, Librax) By October, I was ready to have a full time ostomy. I was going about 30 times a day, incontinent, and in lots of pain. Couldn't leave the house, etc. Both CRS and GI thought it would be worth trying Humira. And it did help. Brought things down to about 15-20 times. And even got a little better with time. But now it's starting to be more like 15-30 somedays, really acidic, still some incontinence and pretty much still house bound. I'm also on either flagyl or vancomycin every day. Which help, but I tend to get anxiety when I take a lot of antibiotics.

I have a scope on Monday, but my GI and I expect to see more pouchitis, cuffitis. He thinks we ought to try switching to Cimzia. But I am wondering if I should look further into pouch advancement or possibly make a trip to Mayo or Cleveland Clinic?

On the med side, I'm open to trying something new, but would prefer not to stay on 3 immune suppressing drugs (buedesonide, flagyl, Cimzia). I haven't been able to quit the beudesonide or flagyl previously and have tried many many probiotics which only seem to make things worse. But lately I am just exhausted and I worry some of that may be all the medication.

I'm not opposed to an ostomy either. My only concern is trading one set of problems for another. A gal I know had her pouch removed, and a permanant ostomy but still has problems with fistulas. When I had my temp ostomies I struggled a lot with skin irritation so that is a concern for me as well.

I know it still depends on the scope results Monday, but I want to have a better idea of what my options are and the direction I want to go so I am just interested in hearing any feedback at all. As someone else on here wrote once "I'm living a pouch-centered life." And I am desperate to have a little more in my life going forward!

Thanks!
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BillVBillVMember
I would go with Cleveland Clinic over Mayo on the basis of their good reputation in dealing with pouch problems. They offer a remote consultation service (check their web site) in which the patient sends pertinent medical records, thus avoiding the need to travel to Cleveland. If the best efforts to correct your J pouch problems are not successful, you may want to consider a K pouch or BCIR which avoid many issues people have with end ileos.
O oonjaMember
So had my scope today and it actually looks great. Very little inflammation. Had Biopsies done so we'll see if there is anything to that, but otherwise doc said it may just be "me and my pouch."
So I guess I'm wondering what other people's experiences are... is 10-20 BMs a day a concern (other than annoying!) and should I be worried about being on beudesonide, flagyl AND humira long term? Also I'm just flat out exhausted. Sleeping more than awake lately.
Just trying to decide if I need to adjust my expectations or look for other solutions.
L LjzMember
Oonja, so sorry you are struggling so much! I agree that it would be worth either visiting (ideally) or getting second opinion online with Cleveland Clinic ($800). I don't have any other suggestions for you but I would not want want to be on those 3 drugs for life if there are any other options. Good luck trying to get healthier pouch or other. Laurie
R Rebe0505Member
try cleveland clinic as a start..from there you should follow this site and start to try the different things many of us try to better our situation..

my pouch did not look really bad,i have no biopsy finds but let me tell you i got a trouble intestinal situation..so i tried diet still on to cut down bad bacteria ..i rotate antibiotics as do others on this site,maybe these things will cut down your many drugs..that would be improvement and bring down your b.ms to 10 or so..incremental gains is what we get with so called"its just you and your pouch situation..

at least dr. shen at cleveland deals with a lot of us and is open to the rotating antibiotics,diet as help.. ..not sure what his next level is of care as i am not there myself gratefully...

we on this site probably have the whole mix of "just yous" people so we come up with various things that may help and some help some but not others..nature of the beast..

tiredness look into your iron level and any other vitamin etc deficiency ..if you go 20 times and inclined not to eat a lot makes sense ..not enough energy ..these troubled pouches are not for the faint of heart..its a struggle..there is however hope also point to be taken i try not to think i will be on anything rest of my life..maybe something else will come along and just take that issue and put it out of my mind and just concentrate on looking for way to have my best days..
LHettiLHettiMember
Oh, wow. I'm sorry for your trials! I was sent to Mayo Clinic, MN for a second (third?) opinion and I really had an amazing experience there. My issues were the cuff and fistulas for sure and they wanted to save my pouch. In the end, I ended up with a perm ileo this spring. I'm doing really well!

I had problems with nightly accidents when I had my pouch and I will say that diet totally changed this for me. It's different for everyone, but the SCD/GAPS diet fixed that issue for me. No refined sugar, no grains, no lactose. It was a huge commitment, but worked for me. Lots of homemade chicken broth! Lots of fats! My energy was good also. 8-10 times a day was normal for me then. I also took iron supplements because I was anemic from a GI hemorrhage.

Acupuncture also really helped with my pain.

I was on Flagyl and Remicade in years past, but on nothing while doing the diet. In the end, not enough to heal all the hurts, but made it better in the process.
Laura

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