New Diagnosis

[Phs0201]

I am hoping someone can help me. Some history: 10 years ago I was diagnosed with diverticulosis after an attack of diverticulitis. I increased my fiber and after another attack a year later I haven't had another attack. Then about a year ago I started having intense cramping, never feeling full, blood in my stool, depression and pretty much every other digestive issue one can have along with some odd non digestive symptoms. I was referred to a gi doctor who performed a colonoscopy 8 months ago and said I had colitis. Was prescribed 40 mg prednisone (tapering off) and cipro. He then ordered a blood test to test for Crohns. It came back with a very weak positive. The gi Doctor then put me on Asacol. After 3 months pretty much all of my symptoms were gone. My doctor took me off all meds. A month ago everything came back. He didn't bother to even schedule me an appointment, just prescribed the same meds and wants to do another colonoscopy. He has never actually diagnosed me with anything other than colitis. I asked what my diagnosis is and he said, well I'm going to treat you like you have Crohn's. So my questions:
1. I'm thinking its time for a new doctor. This one can't seem to make up his mind.
2. If he's "treating my issue like Crohn's" without diagnosis why the Asacol? It does seem to help some things, but isn't it more commonly used for UC?
3. Has anyone else ever been stuck between a UC diagnosis and Crohns?
4. Has anyone else had a weak positive on the blood test and actually get a diagnosis?

Sorry if I'm rambling, I'm new to all this and very confused.

 

[Clash]

Hi. Welcome to the forum. To answer your questions:

1. A second opinion can't hurt and you may find a doc you are more comfortable with or have better communication with.

2. You're right in that 5ASAs, like asacol are approved for UC, they help the top layer which is what UC affects. CD is transmural, affects all layers. A Cochrane review showed that 5ASAs are as effective as placebo. That being said GIs do often prescribe them for CD, often if the follow the bottom up protocol(start at the bottom of the pyramid of meds and move up. The bottom would be 5ASAs, then immune modulators like imuran, 6mp or methotrexate, then at the top biologics like remicade and humira). Also, 5ASAs are prescribed as adjunct therapy with other meds.

3. There are members on here that have been dxed with indeterminate colitis. Imaging could determine if you had inflammation in the small bowel which occurs with CD but not UC. A pill cam is another option. Were there biopsies taken with the scope? Those can also determine if it's CD.

4. I'm assuming the blood test you are referring to is Prometheus. I don't have any experience with this test but have read that it can be wrong or maybe the word I'm searching for is unreliable as a diagnostic tool.

Hope you find some answers and relief soon.

 

[Phs0201]

Thank you for the quick reply. Biopsies were taken and all were normal. Before the colonoscopy I had a contrast MRI which also was completely normal, no signs of inflammation. The only abnormality was colitis found during the colonoscopy. That is the blood test I had and my GI even said they aren't all that reliable especially with a weak positive like mine. That is why I am confused. No diagnosis, but he's going to treat me like I have CD? This doctor is already talking surgery. Seems to be moving rather quickly.

 

[Clash]

I do think a 2nd opinion would be helpful. Some top IBD centers will even do a records review where all of your records are sent to the facility and they give their opinion. It's fairly common with pediatric patients.

But honestly if you are confident in this GI then another opinion may be helpful all the way around.

 

[Eridon2002]

Hi Psh0201, I agree with Clash, a second opinion is a good idea. The colonoscopy will show the colitis better than and MRI. Did you have biopsies done during the colonoscopy? That will show how deep the inflammation goes and will point either to UC or CD. I had a weak positive on my Prometheus test but I feel that it is meaningless as to the severity of the Crohn's(I had to have 22cm of my colon removed). You need a more thorough work up to determine what you have and what will be the best treatment path so that the inflammation doesn't cause damage.