Crohn's Disease Forum » Support Forum » Undiagnosed Club » 3 years and still without diagnosis

06-17-2015, 09:42 AM   #1
Join Date: Jun 2015
Location: Indiana
3 years and still without diagnosis

I am at my wits end! I am tired of being in pain and feeling bad all the time.

My story began 3 years ago. I was diagnosed with Episcleritis about 6 months prior to my abdominal issues. My episcleritis is located in both eyes and will only go away for about a week at the most. My abdominal issues consist of pain in my lower/mid right side, alternating constipation and diarrhea, with mostly constipation, as well as nausea. I have a mouth full of canker sores pretty much all the time.

I have now seen 3 GI doctors. I have had a colonoscopy, upper endoscopy, flex sig, and a ct enterography. The first 2 doctors continued to tell me it was IBS, they would give me medication, which did not work. I decided I was done with doctors until recently when the nausea and pain just continued to get worse. I have now been to see a 3rd GI doctor. He stated since my scopes all came back clear and the other doctors said it was IBS that he would try me on IBS medicine too. He has now prescribed Linzess, which has not helped a bit, if anything has made the pain worse at times.

Any advice?
06-17-2015, 10:30 AM   #2
Join Date: Oct 2012

My Support Groups:
Getting a diagnosis can be hard, and with negative scopes you may find some doctors reluctant to suggest anything more than IBS. The best advice I can give is to find a doctor who takes you seriously regardless of test results. You should never have to feel like you have to prove your illness to your doctors or worry that a negative test result is going to mean you get dismissed.

I'm not familiar with episcleritis. Do you feel it's related to your digestive issues?
What other medications have you tried?

You may want to join this support group for people here who are undiagnosed: You'll see there are many in similar situations who will help support you through the frustration and worry that can come from having difficulty getting a diagnosis.
06-17-2015, 04:07 PM   #3
Join Date: Apr 2013
I don't know much about Behcet's disease, but some people around here are discussing it and it seems to involve eye problems, mouth ulcers and GI symptoms....

If it turns out to really be IBS, diet and supplements can help more than drugs sometimes:
low FODMAPs diet or something like the specific carbohydrate diet
Many with IBS have to avoid wheat, dairy and artificial sweeteners
Adding probiotics, daily metamucil and maybe calcium supplements can help
06-18-2015, 09:19 AM   #4
Join Date: Jun 2015
Location: Indiana
Thank you for the responses.

Medication I have been on for IBS is Levsin and I don't recall the other.

Yes when my episcleritis flares my digestive system also flares.

I have been reading about Behcet's from the posts that have recently took place.

Crohn's Disease Forum » Support Forum » Undiagnosed Club » 3 years and still without diagnosis
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