Doesn't really sound like it (or even that they know what it is) but more like a melting pot diagnosis...non specific ileits...in other words...Could be anything but we are not sure???? I would honestly send the results (biopsy slides) to another diagnostic center for a counter-opinion (so that she doesn't have to go throught his again)...sometimes a different diagnostician can have a totally different point of view during diagnosis...????
Sharon

I agree with Sharon.

Also, it's been my understanding (although I've been known to be wrong from time-to-time ) that the presence of granulomas indicate Crohn's. In other words, no granulomas = no Crohn's?

I'd ask for the slides to be sent to the Cleveland Clinic for a second opinion.

Thank you Sharon. She has requested the slides be sent to another Dr. We didn't even think of that, but he did thankfully. Her surgeon might even want them too, although he will be taking his own post surgical look next week.
After her pouch revision in May, she had a blockage in Aug and then in Sept and Nov and now again (this one would not resolve on its own) I am wondering, since the local GI that did the scope, said that he felt a kink in addition to the stricture, if she could have a twist or persistent adhesion in that area causing her intestines to always be twisted or inflamed and that could be the answer.

Thank you n/a. I thought the same thing about the granulomas, and was happy the report didn't show that!

Actually, the absence of granulomas does not rule out Crohn's. The presence of them is diagnostic, but the absence is just that, the absence of definitive evidence. That still leaves Crohn's in the diagnostic possibility. According to the biopsy, it appears that Crohn's is definitely possible, and together with the history and current presentation, a diagnosis could be made by her treating doctor.

Crohn's is most often diagnosed by the tipping of the scales one way or another. They are happy when they find granulomas, because then they KNOW it is Crohn's. But, in more than half of the cases of Crohn's, granulomas are not found.

http://emedicine.medscape.com/...8-overview#aw2aab6b8

Jan

Hi Beckysmom-

This sounds very similar to my situation. After MANY scopes, CTscans, MRenterographies, biopsies, and 19 days in the hospital, they diagnosed me with Crohn's. The word granulomas was a point of contention, but my GI doc and colorectal surgeon said there were enough indicators, including fisutals and strictures to justify the diagnosis. As Jan said, granulomas are not necessary to make the Crohn's diagnosis.
I've had 3 Remicade infusions.

Let me know if I can give you any further help.

Take care,

Lisa

Thanks. My daughter never had fistulas and was also checked by Shen for sinus tracks and crohns, he said no.

I will wait for the doctor's opinion that wants to see the path slides with his crohns specialist.

quote:

Thanks. My daughter never had fistulas and was also checked by Shen for sinus tracks and crohns, he said no.

I will wait for the doctor's opinion that wants to see the path slides with his crohns specialist.

As I mentioned previously Crohn's was suspected, but ruled out in my case for some of the same reasons. No fistulas or sinus tracks in 20 years, pattern of inflammation in ileum is atypical, plus I had a CT Enterography and Prometheus tests that were negative, plus my results were looked at by a supposed expert pathologist who also said no.

A few posters have mentioned on this board that if you have chronic pouchitis or other inflammation after J Pouch surgery, it's "game over" and you have Crohn's. This line of reasoning has been rejected by multiple medical experts I have consulted with.

I should also mention that even if Becky is officially diagnosed Crohn's, regardless of the operative diagnosis it is what it is, and she should be more concerned with getting proper treatment than with the proper operative diagnosis, which remains elusive and difficult for some of us. I have seen many posters needlessly torturing themselves over the uncertainty of diagnosis. As Jan said, if she is diagnosed with Crohn's at some point, it may lead to implementation of new treatment regimens that she should have had in the first place.

My doctors and I have been treating my pouch/ileum issues as if they were Crohn's for many years, with positive results. But we do not actually believe that what I have is Crohn's.

Thanks CT. We are hoping for the best. After 9+ years, she has never tested positve for crohns either and has never shown inflammation anywhere else till now.

The problem lies not with the diagnosis title, but the treatment.....my daughter had life threatening pcp pneumonia when she was 10 and on immunosuppresant meds. Therefore, she had to have surgey rather than risk it again with remicade, etc.
IF she has crohns, I don't know how it could be treated since no one has ever wanted to try her on the bilogics due to her past. Also, biologics we were told, before her last surgery, can actually close the strictured area and then she would still require surgery. And then with crohns, surgery is not the best option either, in that it could return or make matters worse.

Hers is a complicated case due to her history.

How is she doing Susan?

Hi. And thank you for asking! I sent you a pm.

More testing.

Thank you again.