Possible misdiagnosis: Crohn's or IBS or ...?

[heather41]

I have post pregnancy diarrhea with extremely painful cramping. It got worse over 2 years. GP was not helpful. Finally, I took myself to the local GI.

Lots of tests: Colonoscopy nothing. Stool test shows white blood cells. Small Bowel Follow Through nothing. Pill cam tiny damage to small intestine. Blood test confirmed Crohn's.

Tried Entocort and I felt much better at first. Began to taper off and went right back to being sick. Tried Lialda and Delzicol, but they don't work and have bad side effects.

First doctor seemed pretty much stumped, so after 10 months on Entocort, I got a second opinion at a teaching hospital. They think it's probably IBS. Put me on FODMAPS diet and want to do more tests. Next test is a CT scan. Endometriosis was also mentioned as a possible cause.

I'm losing my mind not knowing what's wrong with me and with the diet restrictions. Before all this I was mostly vegetarian, but Crohn's put me on a low fiber diet and I really believe that greens and beans were making me sick the next day. I am now scared to eat vegetables, and with the FODMAPS, I can't eat bread, pasta or avocados, which were a huge part of my low fiber diet. I'm hungry, cranky and confused.

 

[my little penguin]

Welcome 5-Asa are not approved as monotherapy for crohns only ulcerative colitis
They only treat the surface .
Ibs does not cause ulcers
Most people get worse when they wean from steroids without a"real" crohns maintence med immunosuppressants (6-mp/Imuran /mtx ) or biologics have had time to fully kick in which is why they stay on steroids for months until then.
Fodmaps will not fix crohns
My kiddo did pentasa it did nada and he definetly has crohns.

I would try for a third opionin
Good luck

 

[heather41]

Thanks for the feedback. My first doctor didn't even have Pentasa on their list of meds, which shows how little he knows about Crohn's.

The new doc says the problem in my small intestine is so small it could be NSAIDs. Also he never uses the blood test that confirmed my Crohn's. I admit that I used to take a lot of NSAIDs, and I'm not sure exactly when I stopped. Next step is a CT scan after 8 weeks with no NSAIDs. He says, if I have Crohn's the next step is immunosuppressants, but he won't put me on that for the rest of my life when he's not sure if I even have Crohn's. He thinks it's more likely IBS. Hence the low FODMAPS diet.

I live in a small town, so I had to wait months and drive an hour to go to my nearest teaching hospital to get a second opinion. For a third opinion, I probably need to go to New York City, which is nearly three hours away. I will see what happens after the CT scan.

 

[David]

That the colonoscopy and pill cam didn't confirm Crohn's is good. Those blood tests are NOT a reliable diagnosis for Crohn's.

Do you have any other symptoms besides the gastrointestinal symptoms?