I am on Remicade and Imuran for chronic pouchitis 20 years post op. No diagnosis of Crohn's, but does it really matter? Not to me. What matters is being functional.

Jan

Agreed.  I had my jpouch since '93, but about a year ago, the biopsies came back with a Crohn's diagnosis.  I knew something was "off", but the biopsies - and the fistula - verified it.  It must be fairly mild (knock on wood), as I'm doing fine with no medication other than what I've been taking for cuffitis.  Things may change someday, but for now, nothing has changed for me with this diagnosis.  Are you having issues outside "the norm"?

Thanks for the info.  I am glad you are both doing well.  I have had pouchitis through the years, GI doc would up Cipro or Flagyl.  I was on a low dose of Cipro for quite a while.  Felt crappy, turned out not to be pouchitis but scope & biopsy came back for Crohns.  Now new GI doc is talking 6MP or other treatments since I cannot stay on prednisone (since end of April).  I am not having issues & doc says I have "minimal disease". . . not sure I want 6mp,which doc recommended.  One doc in hospital mentioned turmeric & CDB... am weighing options.

My surprise is that UC turned into Crohns but as you both the diagnosis does not change anything...

There is a theory that chronic pouchitis is a new form of IBD, plus there are a number of subsets of UC and Crohn's that were already known.

I am on Imuran (similar to 6-MP) because it helps prevent antibody production and reactions to the Remicade. It is a small dose. In the decade I was on other biologics, I was not on Imuran.

Jan

I do take curcumin every day.  I've also been taking s. boulardii probiotic for the last year (https://www.amazon.com/Jarrow-...keywords=s+boulardii), which I read at some point MIGHT be good for those with Crohn's.  CDB?  Am interested in what this is.  

I was sick for many years prior to my Crohn's dx., with no one giving me any real insight (doctors, I mean).  I was on Asacol and Lialda for awhile, you could look into those possibilities.  

I do worry about things kicking in again at some point, but until I get some symptoms, I think I'll continue as is.  If I had a doctor nearby who was really interested and knowledgeable, I'd probably be more proactive, but that's not the case at this point.

Perhaps you could get another opinion from another GI re the 6MP?

In April I had heart failure caused by pulmonary embolisms which docs say were due to crohns/UC inflammation.  So I am on blood thinners. Docs say curcumin can't be used with blood thinners.  I am weighing all other options so I appreciate all help. Of course each one has a long list of potential health risks.  I am lucky to be alive but an nervous about new meds....

I was diagnosed with UC in 2011. We tried all the drug/biologics options until 2015 when I got a J-pouch. The pouch kept failing and causing complications. After having complications with my 6th surgery, my surgeon took biopsies. The results changed my diagnosis to Crohn’s- Colitis (CC). I got the Kpouch a few months later. I’m on Stelara hoping to keep the CC controlled. I call myself now in functional remission. 

thank you all for your insight.  I hope all of you continue to do well on your different therapies....still struggling but still here.

thank you all, interesting to know what works for one doesn't always work for all. I check this site first for information to manage my K pouch.

Hi Arlene and Shavon,

Glad to have found you. I’ve had a k pouch for about 38 years all very good mostly. Originally from UC.  I have been very sick over this whole year fighting pouchitis. My doctor in NYC said there’s a new thing where those of us who had k pouches for many years are turning up with pouchitis that is now presenting more like Crohn’s!  I have been so sick with it. I get all the classic Crohn’s symptoms with the pouchitis like pain,  blood in stools, gas, cramping, gas incontinece. But then it got worse. I got mouth sores and terrible migratory joint pain. To the point where I would limp from hip pain and it moved to severe neck pain.  I am now on flagyl and prednisone which has helped the joint pain and slowed my belly down. The doctor said my pouch had ulcerations and  inflammation. The meds make my head feel awful and me exhausted. I am hoping after the meds the UC/Crohn’s pouchitis will go away for a while. But I think I still need a nipple valve revision for some gas leaking out. Any advice insight would be so greatly appreciated. Thanks. 

When I got my Kpouch I was told that there was a 50% chance that it wouldn’t work because the Crohn’s would eventually start attacking it. Every day I cross my fingers that the Stelara will keep things calm. However, if it can’t I knew from the beginning that a Brooke was the best option to avoid flare symptoms. With Crohn’s, the body sometimes can’t handle holding stool for any period of time. So I’ll just have to get the dreaded bag again. Unfortunately that may be the best option for you too if they can’t find meds to control everything. 

I’m so sorry you are suffering. 

March,

my doc is also in NYC, Dr. Rubin.  I hope things quiet down for you.  I hope the meds start working.  I take a probiotic with bifidus every night, I take 5 mg of predisone a day and I have also recently began CBD for inflammation.  I have had scopes and such that do not show crohns definitively but it is strange that colitis morphed into crohns?

Hi Arlene! Wouldn’t it have been funny if we were both there getting scoped by Dr. Rubin on the same day?! He’s such a caring doctor. The meds have quieted things down right now. Fingers crossed. So...yes, he told me there’s a new phenomenon- a new disease, where people who had UC originally and not Crohn’s who got the k- pouch years and years ago are now showing up with pouchitis and Crohn’s like symptoms. I think the medical community is just learning how best to deal with this too. My question is this: For the sake of our health and quality of our lives- is it best to keep the pouch as is and use meds to try to heal the Crohn’s like symptoms in our bodies? How well will these meds work and for how long?  Or is it better to get the diseased pouch out of our bodies like we did our diseased large intestines originally?  Or... do we even have enough intestine left to make another new pouch?  Things to understand. I love having my k pouch. I have been very fortunate for many years. But the pain of mouth ulcers and horrible debilitating joint pain which are also Crohn’s symptoms were too much pain for me on top of regular pouchitis symptoms. I have 3 kids and am very active. They have quieted down for now  

I was thinking it would be nice to make a support group or meet for coffee sometime for anyone with a k pouch or pouchitis etc who wants to talk near NYC. 

Anyone near Philadelphia?

March, this is what my GI told me. Nothing brings out Crohn’s like a pouch. Often patients have Crohn’s that only presents UC symptoms so it is misdiagnosed. Some patients can go forever and never know. It happens about 9% of the time. However, when patients get a pouch - any type of pouch- Crohn’s will more likely surface. Doctors don’t know why but they suspect it has something to do with the bacteria in stool being held in the body. 

So the options are lose the pouch. The bowel symptoms will improve but you’ll still have Crohn’s. If meds don’t help you may still have the other symptoms and you lost your pouch. Or you can keep your pouch and try the newer meds on the market. This is the option I’m currently choosing.  If symptoms return and are unbearable, I may change my mind.  But I suffered to much for my pouch to let it go easily.

Good luck!

I have a friend who has had a k pouch since 1980 (Dr. Gelernt Mt. Sinai) and has never had pouchitis. and she empties every 8 hours!  So I am at a loss as to why that is.  There are new meds coming out all the time so I hope that I can maintain my pouch for years to come.