Update- a bit long but some might find it interesting.

Hello:

Some of you might remember me. I've been treated for crohns for 5 years with pentasa and 3 years with humira without a definite diagnosis. 100% improvement on bowel symptoms with pentasa, good improvement on fatigue and general malaise with humira.  Well, I had to switch gi doctors for insurance purposes and the one I am going to now really has doubts that I have crohns despite my improvement on medication. He said that even though patients respond clinically to medication (tried to blame that on "placebo effect", right) when you scope them there is always some remnant of disease. So I had my colonoscopy everything looked great and he did two biopsies, left and right colon, which came back negative. He is the third doctor who did not biopsy my terminal ileum. At least he had a reasonable excuse. He said that due to my distorted colon that has many twists and turns the scope was not long enough and the angle into the terminal ileum was too sharp He tried for 20 minutes and gave up. Suggested capsule endoscopy but doubt I will do that.

Before the colonoscopy he did some bloodwork. I now have a postive ANA (1:1250) and the pattern, along with a positive anti-smooth muscle, makes it look like autoimmune hepatitis. THat could be secondary. Maybe its from humira. My liver function tests are negative though and the gi said that means it is not "active". He is going to repeat my lft's every 6 months.  The rheumatologist has no idea. (he's the one prescribing humira, not the gi, for spondyloarthropathy) He suggested lupus (I"ve had 4 workups for that, but this is the first time I've had that high a titer of ANA) plus I have a strong sun sensitivity which interestingly went away with humira.  I've also been worked up for Behcets in the past because before humira I had a major mouth ulcer problem but never had the eye inflammation and never found vasculitis, maybe because no one has looked for it due to the fact that my crp's are borderline at the worst.

So, looks like I probably don't have crohns. Lupus and behcets can have gi inflammation as part of the disease.  I'm off pentasa (tried dc'ing before and did well for 6 months) and am not doing another humira injection. I'll see what happens. I'm going to ask to repeat the bloodwork in a few months and if still positive, or if not and I don't feel well, ask to try another biologic. Any gi inflammation I had in the past may be gone since I've been treated for 5 years (and since its probably not crohns per se would still be evident) so the capsule would most likely be negative and besides, it may all have been microscopic only to begin with.  Maybe gi inflammation in lupus and in behcets follows different rules than in crohns.

So, looks like I don't have crohns which was never typical. I know some people on here don't have clear cut cases either.  All of these diseases seem to have the same root cause and are treated in a similar way now that the biologics are available.   It seems like, in this case, who treats you (gi or rheumatologist) makes the difference in what treatment is emphasized.  

Chris aka Rootsmith

Thanks, interesting. I don't feel all that great now, humira doesn't seem to be doing much at all anymore. It'll be interesting to see if the major problem I had with mouth ulcers returns when I stop humira completely. I had done an elimination diet and found that it was milk protein that seemed to trigger the mouth ulcers (which I had in some shape or form all of the time) After about 2 years I stopped the diet and the ulcers didn't return but then a few months later I went on humira so its unknown whether the ulcers would have returned to the same degree had I not started humira. I guess I'll find out now. Actually I hope they will because then I know that humira really was doing something other than just generally making me feel better. Nothing I can put a finger on. I don't know how diet is connected to behcets but the immune system is involved in both. I had elevated IGG antibodies to milk protein (casein) I also had a major problem with sunlight before humira and I can connect the disappearance of that with humira. I've never heard that sunlight and behcets go together, one thinks of lupus with that problem.
One of these days it will get figured out..... I'm going to suggest this to the rheumatologist, a different one than the one who worked me up for behcets before which wasn't really worked up. Its a very subjective diagnosis and I never had the eye involvement and like I said, no one looked for vasculitis. I have plenty of "rashes"

Hi Davis
I know the colonoscopy can be negative in CD if the problem is not in the colon or if it is only microscopic and the doctor doesn't hit the right spot. But my current gi must not believe it can only be microscopic because he said that even when patients respond clinically to medication when they do a colonoscopy they usually see some evidence of disease. I personally think doctors say whatever they want to prove whatever point they want to prove because surely he knows that CD c an be in the small intestine only and you don't see the small intestine (except for the very beginning of the TI) during a colonoscopy. He did say he was going to biopsy my terminal ileum for this reason,adding that CD of the small intestine *without* involvement of of the terminal ileum is "very rare". Yet we know others have it just in the stomach or esophagus, etc. Sometimes I think doctors only see the very obvious cases, the other maybes go undiagnosed. When he couldn't get the scope to reach the TI he gave up and suggested the capsule.

Is this guy bs'ing me or what- has anyone ever heard of the scope not being long enough?

Thank you both for your encouragement. Around 2006 I stopped wanting to know the name of my problem and just wanted to feel better. I felt pretty sick but nothing like I read about. I found a gi doctor (who has since retired) who was willing to do a trial run of pentasa (after first trying asacol wiht only about 75% remission of pain which was my main symptom, not much D) I was treated with pentasa since 2007 but still plagued with joint issues so I went back to the rheumatologist but not the one I had seen many years ago (the one who didn't work me up for Behcets even though my pcp sent me to him for that purpose had left the group and it was a new one) This new one decided to treat me with humira for the joint issues and I did well. Not fantastic but I felt well. I also have some osteoarthritis issues and "mechanical pain" as he puts it so its hard getting it all sorted out. I've been on humira for 3 years. about a year ago I went off pentasa and did very well for 6 months and then had a major intestinal issue, went back on pentasa and was fine in that dept. I wouldn't say that I *want* the diagnosis to be crohns but its obviously something because no one is saying that I don't have anything wrong with me anymore. I could have continued like this but the gi willing to do the trial of med retired and sold his practice to a group not in my insurance network. Since my medical bills are mounting I decided I had better change gi docs to one that was in my network. I ddin't expect much trouble since most doctors respect a diagnosis you come to them with. But that is when the trouble began again. This new gi is part of a large group, the only other group in town. I chose the one whose biographical sketch said he had a special interest in crohns.

Tsitodog- for this reason I can't switch doctors. I had an open mind with this new gi but he doesn't seem to have the same ideas as the other one. Maybe he's right and I don't have crohns (he didn't actually say that but he is being very hard to pin down) If I ever manage to pin him down again I will ask about the capsule which he suggested but I really doubt it will show anything. I'm going to take some time off meds and make more observations and then return to the rheumatologist and ask to try another biologic which some people seem to have to do. Maybe my gut will flare again? Who knows? I think indecision is almost as bad as knowing it is crohns (not quite, from what I read, but not knowing is not fun either, IF it keeps you from feeling well)

I guess I do believe now that the scope wasn't long enough. He did say he tried for 20 minutes. At least he was honest.

From what I've read and my past history I am thinking it is Behcets and like someone said, these diseases are treated very similarly now that the biologics are on the market. So even if one doctor calls it CD and the other says Behcets it doesn't really matter if they use the same drug to treat it and that takes me back to 2006 when I decided I just want to feel normal, call it whatever you want to.

Thanks for your responses