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)