Finally diagnosed after 16 years of misery!!!

[chuckmya]

Finally established myself with a new GI doc in the Boston area and low and behold we have a diagnosis!!!! 1999 pathology report and operative report had compelling evidence for diagnosis! Now just a few more tests to determine if I have active disease and it's location! So she ordered an MRI of the small bowel and depending on those results may also want a new colonoscopy and upper endoscopy. Would appreciate input or thoughts on what meds may be used to treat crohns located primarily in the small bowel?? Kinda new to the meds but certainly all too familiar with the disease!!:eek2::eek2::eek2:

 

[theOcean]

Congratulations!! :hug: That must feel so great to finally get a diagnosis after all this time.

And Pentasa is one of the few that releases in the small intestine. Otherwise stronger ones vary depending on severity. How is your illness treating you? What symptoms do you have?

 

[chuckmya]

Well I have constipation most of the time! With occasional D...... Feeling of fullness after eating, decreased appetite, nausea, obv abdominal pain and migraines! Had a recent colonoscopy in February because of a G I bleed! Was undiagnosed @ the time but the colonoscopy revealed ulcers on the terminal ileum AND the last GI doc did NOT biopsy! Also extreme fatigue!n hafta really watch what I eat especially high fiber foods!

 

[Cat-a-Tonic]

I will never understand doctors who don't take biopsies during scopes. I'm glad you have gotten some answers, and I hope this next round of tests can pinpoint what's going on.

As TheOcean said, Pentasa is the one med that I know of that works specifically on the small intestine (it's got a special coating so it passes through your stomach and then releases in the small intestine). It's a mild medication and is used more for remission maintenance than for getting a flare under control. I would imagine that you're in a flare, given your symptoms. So they may put you on something like Prednisone or Entocort (corticosteroids) for a short while to get the flare under control, and then likely something else for maintenance long-term - whether that's Pentasa or something stronger will be up to you and your doctor.

 

[nogutsnoglory]

Apriso is similar to Pentasa and also works on the small intestine. Others are drugs like prednisone and entocort for the short term. Entocort has way less side effects! The more serious meds for moderate to severe inflammation include immunosuppressive meds like 6mp, imuran, methotrexate or biologics like Remicade, Humira, etc.

 

[Brenden]

Congrats on your diagnosis! Must be great to finally know for sure what you have. Hopefully now you can get the proper treatment you deserve. Keep us updated

 

[Daisy123]

I hate to hear about such long struggles for diagnosis. I was lucky. My parents paid for me to see a GI specialist after I had been ill for 3 months. He took my history and diagnosed before I had the tests. I have it in my small bowel and take Pentsa and Aziathropine to maintain remission. Steroids stopped working a while ago.