Can CellCept Mask Crohn's Disease

[kerale1]

Sorry if this is long. Back in 2005 I was diagnosed with Crohn's of my terminal ileum. I went into remission and then my GI moved. The GI I went to next, never believed I had Crohn's and just said I had microscopic colitis. I haven't had much trouble since my remission anyway so I just went with what she said.

Starting in 2009, I was put on CellCept for my dermatographism (a form of autoimmune chronic hives). It has helped my hives tremendously.

Since October 2012 to present, I have had increased abdominal pain and cramps, diarrhea, high liver enzymes which go back to normal before going up again, and extreme fatigue. I have lost weight, been put on a feeding tube, and still I double over with pain from the cramps. I went to a liver specialist who ruled out Sphincter of Oddi Dysfunction. He thinks it is all from Crohn's. The problem I have is none of my tests so far have shown that I have it.

I was wondering since CellCept is sometimes used to help with Crohn's, could it be preventing my tests from showing Crohn's? I know you are not doctors and am still working with mine but any insight from your experiences would be very helpful. Thank you! --Kellie

 

[theOcean]

CellCept is an immunosuppressant so it is possible that it's been keeping your Crohn's in remission, or at least it was. Biologics have immunosuppressant qualities, and other people are put on Imuran/6mp/Methotrexate which are immunosuppressants as well.

Your symptoms since October 2012 do sound a tremendous amount like Crohn's. I would get a blood test to check for inflammation, and see if you can get a colonoscopy with biopsies. Biopsy is often the main thing that confirms the diagnosis. If you were in remission when your second GI saw you, that may have been why he didn't believe you had it. I'm in remission and my recent colonoscopy went so well my GI said it didn't look like I had IBD at all, though I obviously do.

Once you do get that confirmed, you can hopefully be put on 5-ASAs (anti-inflammatories that treat the colon/small intestine) or biologics that work extremely well for Crohn's. Likely you'll be put on prednisone (a steroid) first to treat the inflammation directly, though. I've been on pretty much every type of Crohn's medication if you have any questions!

 

[kerale1]

Thanks for your reply. I have gone through numerous blood tests which don't show inflammation and I just got a colonoscopy yesterday so waiting for the biopsy results. The only things that show on my blood work is mild anemia and high AST, ALT, and albumin. The pain is usually in my upper right abdomen but my endoscopies have been normal. My GI will do another endoscopy if my biopsies from my scope yesterday come back normal. Meanwhile my pain is spreading to my lower right abdomen so now my whole abdomen hurts. It is just so frustrating to know that all your symptoms fit Crohn's but the doctors won't treat me because the tests aren't showing it. Thank you again for your help. It just helps to know there are others who are going through the same thing.

 

[theOcean]

I would usually get pain on my right side most of the time, like you're describing. I'm sorry this process is so frustrating for you, and wish that your second GI hadn't discounted your first diagnosis like this. Definitely let us know what your biopsy results are like!

 

[kerale1]

I will and thank you for being so understanding. My friends and family try to be but they just don't get how tired I can get or why I like to stay in bed and work from there. It was a blessing to find this forum!

 

[theOcean]

I totally get it! Even my own mother really didn't understand how badly my illness was affecting me, even for a little while after I was properly diagnosed. People really underestimate how much we put up with! A lot of us agree that we're used to a whole different level of pain and exhaustion than most people. I'm glad you were able to find this forum, too! It's been wonderful for me, as well. :hug: