Roughly 12 years ago, I was having diarrahea between 10 and 12 times a day -- sometimes even more. After a colonoscopy, I was diagnosed with Ulcerative Colitis, and prescribed Asacol. It totally cleared all symptoms and life with the medication returned to normal. After 3 subsequent colonoscopies, and no evidence of UC, my doctor did a Prometheus blood test, which came back "more consistent with Crohn's". At that time, my doctor kept me on Asacol, until the manufacturer discontinued it, and then switched me to Apriso. Still feeling good, still no symptoms. Went to the doctor on Wednesday, and she now said that Apriso is not for Crohn's disease, and that i should stop taking it immediately. She has now ordered a barium x-ray of the small bowel, and said she will prescribe a different medication when the results are in. I stopped the Apriso, against my better judgment. Has anyone else been mis-diagnosed? I also had granuloma annulare on my fingers, which the doctor said is associated with Crohn's -- wouldn't I be having digestive symptoms? I've been stressed ever since my appointment on Wednesday -- has anyone had a similar experience?
-
Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.
So unsure of diagnosis
- Thread starter Confused in Vegas
- Start date
theOcean
Moderator
- Location
- Toronto, ON, Canada
I've been misdiagnosed. Back in 2011, I was originally diagnosed with -- you guessed it -- Ulcerative Colitis. When I developed a fistula last summer, it became obvious that what I had was instead severe Crohn's disease. I was also put on Pentasa before and immediately taken off of it when my diagnosis changed, but I wasn't bothered by it because I also felt that it never helped me, unlike with you. (I had to go straight to biologics instead.)
What they're saying is true, though -- those results are consistent with Crohn's. Just because you aren't getting digestive symptoms doesn't mean inflammation isn't there, unfortunately.
Since it's such an individualized disease it's difficult like that. There's a few members on here I've run into recently though who were showing no symptoms but definitely had Crohn's.
I do have a friend with Crohn's who recently went on Asacol, so if you still feel as though it helps you, you could definitely discuss that with your GI.
What they're saying is true, though -- those results are consistent with Crohn's. Just because you aren't getting digestive symptoms doesn't mean inflammation isn't there, unfortunately.
Since it's such an individualized disease it's difficult like that. There's a few members on here I've run into recently though who were showing no symptoms but definitely had Crohn's.I do have a friend with Crohn's who recently went on Asacol, so if you still feel as though it helps you, you could definitely discuss that with your GI.
David
Co-Founder
- Location
- Naples, Florida
If mesalamine has been controlling your disease for this long, in my opinion it's incorrect to take you off of it completely. Have you been having other symptoms that made you or your doctor think that your disease is not being managed? And the prometheus tests give a LOT of false positives, it is more of a signpost type of test.
Now, you may have Crohn's. But if a colonoscopy and other tests don't show active inflammation and you have no other symptoms, why change what has been working? I'm not a fan of mesalamine for Crohn's but there ARE cases where it definitely works. And if you're one of those, why mix things up? And if you do have UC, then we know it can work for a lot of people with UC.
Now, you may have Crohn's. But if a colonoscopy and other tests don't show active inflammation and you have no other symptoms, why change what has been working? I'm not a fan of mesalamine for Crohn's but there ARE cases where it definitely works. And if you're one of those, why mix things up? And if you do have UC, then we know it can work for a lot of people with UC.
Thanks, David. I totally agree with you. I have stopped the mesalamine as of 6 days ago, but am keeping it on hand for the first sign of any change in how I feel. I'm not really having any sort of symptoms, and can eat just about anything with no problems. I'm seeing my PCP on May 20th and will feel more comfortable after discussing this with him, although he will probably defer to the GI doctor's opinion. Apparently the gramuloma annulare I experienced on my fingers last year was some sort of red flag for Crohn's as well as the Prometheus blood test. I'll keep you posted. Thank you for your support.
If the colonoscopies and any bloodwork on inflammation were completely clear then I agree, no reason to be taken off it. Apriso is usually not prescribed because mesalazine compounds don't have a good success rate for treating Crohn's, but if it works, it works. The complications outside the digestive system are a bad sign though, and you might want to consider talking about a colonooscopy if your insurance will cover it if you want to be sure.
David
Co-Founder
- Location
- Naples, Florida
While I'll never claim to be an expert in Crohn's disease, I do know quite a bit and read thousands and thousands of experiences people have. You're the first I have ever read to have granuloma annulare. When someone has it and has Crohn's, they write a paper about it because it is a RARE extraintestinal manifestation.
Here's a case study you may want to read as well where a person with Ulcerative Colitis had it.
Mesalamine is the most benign medication there is for IBD. Yes, some people have side effects but that invariably occurs not long after you start to take it. Obviously you've had little to none in the way of side effects and there's a good chance it has been controlling your symptoms. If they ran a battery of tests and found active Crohn's and wanted to add another medication, that's fine. But taking you off the mesalamine in the meantime? That makes absolutely, positively zero sense to me.
Here's a case study you may want to read as well where a person with Ulcerative Colitis had it.
Mesalamine is the most benign medication there is for IBD. Yes, some people have side effects but that invariably occurs not long after you start to take it. Obviously you've had little to none in the way of side effects and there's a good chance it has been controlling your symptoms. If they ran a battery of tests and found active Crohn's and wanted to add another medication, that's fine. But taking you off the mesalamine in the meantime? That makes absolutely, positively zero sense to me.
Have been feeling bloated and a little constipated the last 3 days. Sent an e-visit to my provider today telling her I wanted to re-start the Apriso - at least until AFTER the other tests she is requesting are completed. We're traveling out of the state next week for about 5 days, and I don't want to feel like I do now. Like you said - the Apriso was working for me. My first couple days off of it I didn't notice any difference -- but now, after a week, I notice a big difference. Thanks for your support and input.