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8 replies

A long story of colitis or chrons??

M MrsBrightsideMember
I have been reading stuff on the forum with interest for many months but this is the first time I have written anything.
I am in the Uk and feel you in USA are more clued up about inflammatory bowel disease!
Anyway, my story is I was diagnosed with ulcerative colitis 25 years ago, then in 1997 I had my large bowel removed (not an easy ride as many of you know but I wont go into detail).
The Jpouch has been ok, better than suffering colitis. However, in the last 2-3 years, things have been going wrong. I have had several obstructions and visits to A & E and consultants etc. I don't enjoy eating anymore as I worry whats happening inside me!
Then after several tests, scans etc, a consultant has told me I have chron's disease!! I cannot believe this, it is not possible. If I have chron's, it means I was misdiagnosed 25 years ago. Maybe I had chron's colitis at that stage and it was missed
I must point out that this consultant I do not know. I have been living in Scotland for 2 years and my previous treatments were in Wales.
This diagnosis of chron's is made solely on the basis I have strictures! The biopsy was clear, I have no blood or any other symptoms of chron's. I always believed the obstructions were due to adhesions as it always happens at the site of the temporary colostomy I had, which was opened up 4 times due to mistakes. The doctors in Wales also diagnosed adhesions although this was never proven.
I have decided to go private for a second opinion as I seriously do not trust the NHS anymore. Also I am dreading the thought of more operations looming on the horizon! I seriously cannot face this again!
Has anyone else experienced both diagnoses' and what happened with this?
Any comments or advice appreciated. Confused
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13 Years & Counting13 Years & CountingMember
I was diagnosed with UC in late 1997 & had my surgeries in March, July & October of 1999. My blood work has consistently come back with markers for Chron's. I had no issues to speak of until exactly 1 year ago when I had my first obstruction that landed me in the hospital. I've had 2 more that cleared on their own, not fun, but so much better then an NG tube. I now have narrowing/stricture which was unsuccessfully dilated this past November. Yesterday I met with a VERY qualified surgeon in NYC to discuss my issue since the surgeon where I live (New Jersey, not far from NYC) was unable to dilate & told me there's nothing he can do & I should go to an ostomy bag. (Not in any way what I want...I immediately thought there's got to be a better answer and/or something else that can be done.) The NYC surgeon told me that you either have Chron's or you don't...the fact that your blood comes back with markers for it doesn't necessarily mean you have it. In addition, it would be very unlikely that you would have functioned so well without your large bowel for close to 17 years if you in fact had Chron's. To have no symptoms for that length of time would be very unlikely. I'm not a doctor by any stretch, but if you're not comfortable with what you heard, or you're feeling something isn't right then you MUST get another opinion. (BTW, NYC surgeon believes he & his pal can dilate the stricture over time & that if for some reason they can't they can surgically bypass the way things flow into the j-pouch & re-route it thereby keeping things internal. I was told there's absolutely no reason to go to an ostomy & that my pouch is "a work of art.") Bottom line, get another opinion! Good luck!
M MrsBrightsideMember
Thank you for your reply. You have confirmed what I believe - that I cant have been ok for 17 years if I have had chron's all along. It seems your story is similar. I argued with the consultant who told me I had chron's and told him he was wrong but he said I will be referred to a gastro doctor who will treat me for chron's!
I am interested in what the NYC surgeon told you also, I will run this by the private consultant I will be seeing soon. Smiler
Scott FScott FMember
While I agree that the surgeon seems to have jumped much too casually to abandoning the pouch, I'd like to correct what I think is a misconception. Plenty of people with Crohn's go years and even decades with no trouble at all, whether they have a pouch or not. You don't hear much from or about these folks, because they have no reason to talk about Crohn's disease. Crohn's can be an awful disease, but it isn't always so. It's a bit like multiple sclerosis in that regard - about 1/3 of MS patients have a single attack, and are never again troubled by MS. We never hear much about that picture of MS.

So: years of symptom-free life don't rule out a Crohn's diagnosis, and I hope you don't have Crohn's. Heck, I still hope I don't have Crohn's.
CatajaCatajaMember
I had UC for 21 years, with no signs of Crohns at all. Within the first year of my j-pouch, I developed a fistula only seen in Crohns, and was rediagnosed with Crohns. 2 1/2 years into the j-pouch I had it disconnected and an end ileo put in. Much, much better as far as gut problems go, but I'm having alot of joint issues now. When I had the j-pouch I had alot of obstruction issues...2 required surgery, 6 total hospital stays...
M MrsBrightsideMember
The way I understand it is that it is impossible to have ulcerative colitis and chron's, at the same time or not.
This would mean for all of us who were diagnosed with uc and then chron's many years later, that the original diagnosis was wrong. It may be that we had chron's all along or that it was chron's colitis. The consultants I have seen here tell me it is possible I was misdiagnosed in 1989 but I believe (and hope) I am being misdiagnosed now.
I have sent for my health records from 1989 to see if there was a doubt on the diagnosis at that point, they will need a big van to deliver them all!
Scott FScott FMember
The categories "UC" and "Crohn's" do a reasonable job of describing two different sets of things, but they aren't perfect categories. While a change to a Crohn's diagnosis might sometimes reflect a diagnostic error early on, it may be more common that the disease is acting like what's called "Indeterminate Inflammatory Bowel Disease." If someone tells you it's "impossible" to have both at once it just means that they have defined the categories that way. The category (diagnosis) is only useful when it helps choose treatments and predict what's coming. For some of us, the categories do that vey poorly, so we have to use trial and error.
C clouseauMember
I was told 20plus years ago I probably had UC but there was a small chance I had crohns after by biopsy and they put in a J pouch. I am told now by Dr Shen at CC that it looks like I have crohns
since i have a couple strictures and at least 1 RV fistula. I may need to go back to a bag as i have chronic pouchitis and am on anti biotics long term. So it sounds like we are in similar situations.

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