Any Jpouchers with Crohns around here?

Hey everyone. So I had the two step J pouch surgeries from fall of 2016 to winter of 2017. In the spring and summer I had a lot of issues with pouchitis. Went on the antibiotics 5 times. Each time it would clear it up. After that I was okay for a few months. In the late winter of 2018 things got worse. My surgeon kept just saying it was pouchitis and giving me cipro. But the blood was every BM and it was dark so I was concerned. He wasn't. Eventually I had to beg for a pouchoscopy. And that's when he found cuffitis and ulcers in the pouch and in multiple areas of the terminal ileum. He diagnosed me with crohns and told me that we were done and he was gonna refer me to his friend who will deal with the crohns.
He didn't take any biopsies, so I had to have another pouchoscopy done and my new gi took biopsies that confirmed the crohns. That was early summer. I've been on remicade once a month since. And taking methotrexate every week. But in the four months my WBC has went from 8.5 to 4.2 so I probably won't be on methotrexate for long. This happened to me when I was on Imuran a few years a go as well.
I'm not sure what's gonna happen there. I'm apparently allergic to immunosuppressive meds.
I'm just wondering how many of us are out there? Jpouchers with crohns. Or people with UC who were then diagnosed with crohns. This all happened early summer and i still haven't come to terms with it.
I don't even really tell people I have crohns, just that I have IBD. I was told that it doesn't really matter what it is as long as I get on the right treatment for it. But my UC was bad. I had many pancolitis flares and ended up in hospitals many times since 2011. So when I had the jpouch surgeries (where I had ileus both times and ng tube) I was fine with the suffering because at least I would be done with it all. But I am in pain more than ever now. I am almost 19 months after takedown. I don't want the pouch and I don't want an ileostomy, but I don't want my colon back either. So when people say that it doesn't matter what they call it, it matters to me because i am back to square one. I would get kind of angry when people out there talk about how well their pouch works. Not angry as in confronting them but just thinking to myself screw that person. I'm better with that now. I'm happy for those who are doing well. I guess that's good. But, I think mentally it is like getting cancer, beating it, and then getting the news that it's back again. At some point you just don't want to fight it anymore. That's about where I'm at.
Anyone out there who can relate? How were you able to deal with it and how is everything?

Post Edited (Riseagainstbadmusic) : 10/26/2018 12:39:27 AM (GMT-6)

Hey Keith, it's good to hear that you're doing okay. I am allergic to flagyl though. And the Rifaximin is too much money to afford. Government program won't cover it and remicade at the same time. I'll have to ask my GI about augmentin though. Do you have an easy time distinguishing the crohns from the pouchitis?

Hey Andrina I recognise you from the jpouch forum. I really have no idea what they did with it. They should have, but at that hospital, who knows. They've messed up a lot with me. It's weird. I had three scopes that didn't show crohns but the last two did. My surgeon doesn't know what happened. Didn't think he missed it, it just wasn't showing up I guess. He's only had one other patient show crohns after the jpouch surgeries. Of course it had to happen to me because most things do. I was worried this was gonna happen before I had the surgeries. Maybe I worried myself so much that I gave myself crohns. jk. I know that's not possible.

Post Edited (Riseagainstbadmusic) : 10/26/2018 4:05:20 PM (GMT-6)

Your name gave it away lol. Yeah you've had UC for 15 years. That's a lifetime. Only had it for 5 and a half years until I had surgery. Was yours mild or in remission throughout the years? I've never been in remission. I'll likely go back to a stoma. This time a permanent one. Permanent stomas are easier to deal with because they aren't close to the skin. I had such an awful time with leaks for the first month. I had mine for five months. Everything was okay though right after I found the right ostomy appliance. It's probably gonna be the most difficult month of your life but usually once you clear that hurdle it gets much easier.

Riseagainstbadmusic said...
Hey Keith, it's good to hear that you're doing okay. I am allergic to flagyl though. And the Rifaximin is too much money to afford. Government program won't cover it and remicade at the same time. I'll have to ask my GI about augmentin though. Do you have an easy time distinguishing the crohns from the pouchitis?

What country do you live in?

There are others antibiotics that they use for pouchitis too. But those were the only ones that I used. Some in combination.

To me, Crohns and Crohnic pouchitis is the same. I don’t have a way to distinguish between the two. My pouchitis doesn’t go away.

ks1905 said...

Andrina said...
May I ask was your colon sent to pathology to confirm if it was UC?

Keith I didn't know you had Crohn's. Your signature says pancolitis which is normally a diagnosis of Colitis.

My colon was sent to pathology, they did genetic tests on it and my surgeon is well known Crohns surgeon who has a Crohns surgical procedure named after him. Everything said UC.

I have chronic pouchitis (listed in my signature) with ulcers at the inlet to my pouch, my GI writes it up as CD for diagnostic purposes and to help with getting Stelara approved. It doesn’t really matter what they call it, I have what I have.

I have no regrets. For ME it is better than living with UC. My quality of life is much better now.

I think it does matter what it is, in that if it is just pouchitis it's just pouchitis but if it's crohns a lot of worse things can happen that are mostly exclusive to crohns disease. You aren't gonna get fistulas from pouchitis but you can from crohns. You aren't gonna need a small intestinal resection if you have just pouchitis. But you may if you have crohns. So it really does matter in the long run.

Fistulas are super uncommon in people with jpouches. Most people who have fistualting IBDs don’t usually get/choose jpouch operations.

Inflammation and ulcerations are usually in and near the jpouch that don’t require resections.

These are really small occurrences in people with Jpouches. I try not to focus or worry about it, I have more fear about the medicines that I take because of the pouchitis/cd.