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My DX changed from UC to CD with no symptoms?

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Crohn's Disease
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Posted 5/24/2017 2:24 AM (GMT 0)
Hello to this forum. I'll try to summarize my story, and if anyone can give me any feedback/advice/suggestions I'd really appreciate it. I'm very confused and a bit concerned after seeking a second opinion from an 'IBD specialist' (referred directly from my GI) after being told I should start taking Remicade + Imuran after being on 5-ASA medications for about 12 years.

I had an abscess drained with a fistulotomy about 2 months ago. After this, I was told to discontinue my rectal medication (Rowasa) for 2 weeks until my GI could see me. A day before my appointment, I had a total flare - diarrhea, blood and urgency. My GI did a flex sig and confirmed the flare, told me to go back on my Rowasa (obviously) and suggested an 8 week prednisone taper. I suggested I just try the Rowasa first and he agreed. I went into remission in ~3 weeks - no blood/mucous/diarrhea/urgency and normally formed, regular BM about 3 times daily.

I got an MRI just before I went into full remission that showed some activity in my ileum.

I went back to the hospital about 2 weeks ago because of rectal pain that I thought could be another abscess. They did a CT scan which showed inflammation in my ileum + lower intestine but no abscess. The pain started to subside and I was discharged.

The IBD specialist said this information - the abscess/fistula, MRI showing ileum activity and the inflammation is enough to change my diagnosis from UC to CD and start me on Remicade + Imuran to get ahead of a "fibrotic ileum" before it can do any future harm.

Does this sound like a reasonable treatment? It seems to me like they're moving to the most extreme measure to try and avoid complications, but I'm symptom free. I don't feel sick. I can live my life comfortably now. The specialist said that this won't last forever, and the choice is mine. I'm so confused. Any feedback would be sincerely appreciated.
Posted 5/24/2017 2:53 AM (GMT 0)
A fistula almost always guarantees that you have Crohn's as opposed to UC. And with Crohn's mesalamine is a fairly useless treatment because it only hits the first lining of the gut, and Crohn's goes through all layers of the digestive tract (hence the reason a fistula will almost always change the diagnosis). Remicade is the #1 best treatment for helping a fistula to heal, and it is the most reasonable treatment out there. In fact, if your GI did NOT suggest Remicade, I would call him a quack and tell you to switch.

You may not have any symptoms, but that honestly means nothing. Some people have no symptoms and then are suddenly septic or have an obstruction because of damage from untreated inflammation. The fact that there is even any inflammation is the first place shows that the mesalamine is not treating your condition at all.

I know this is a bit blunt, and it may seem like it sucks, but you really do need to switch. I made the mistake of NOT switching from mesalamine to Remicade immediately after my first abscess (which turned into a fistula), and it literally almost killed me a few months later and led to over 30 hospitalizations in a 5 year period. I've been on Remicade for five years now, and it is the best decision that I have ever made.
Posted 5/24/2017 3:11 AM (GMT 0)
I appreciate your directness.

What can I expect to change if I move to Remicade + Imuran?
Posted 5/24/2017 5:18 AM (GMT 0)
Agreed that with a fistula, and with inflammation in the terminal ileum, you most likely have had Crohn's all along.

Where exactly are/were the fistula and abscess located?

If you've been feeling well, then in theory the meds won't change that - but they'll prevent long term damage in the TI and reduce the chances of needing surgery there; and they may prevent future fistulae and abscesses.
Posted 5/24/2017 5:31 AM (GMT 0)
Fistula was located in the perineum - no recurrence yet that I know of
Posted 5/24/2017 5:42 AM (GMT 0)
From where to where?
Posted 5/24/2017 7:18 AM (GMT 0)
My discharge doesn't say any additional information. Doesn't even mention the fistula. Says "PERIRECTAL ABSCESS" as the reason I was admitted to the hospital.
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