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Posted 10/10/2015 3:13 PM (GMT 0)
My latest colonoscopy now shows that I have Crohns which is activity in the small intestine. Has anyone else had this diagnosis? I'm wondering if my symptoms will change because the small intestine is involved or if my flares will happen as before. This is quite a shock after almost 20 years of UC, darn good thing I didn't get my colon removed as I was advised to do multiple times...
Posted 10/10/2015 4:52 PM (GMT 0)
I do think some percentage of UCers have undiagnosed crohn's pathology and vice versa. This makes surgery a very tricky predicament, and a decision that should only be made if crohn's is 100% ruled out. It's one the reasons my doc recommended against surgery a few years back, since he wasn't 100% sure if I had small intestine involvement. That began my foray into alternative modalities.
Posted 10/10/2015 4:52 PM (GMT 0)
I doubt much will change now but you are at increased risk of nutrient deficiency and complications. Really sorry to hear about the bad news :/
Posted 10/10/2015 6:28 PM (GMT 0)
I am sorry to hear about this. But on the bright side, you may be closer to a cure than if you were suffering with UC alone.

Canada Mark has posted a great deal on this, but you can also search the Crohn's board. A recent symposium was hosted in Chicago with some interesting presentations regarding an anti-MAP treatment for Crohn's which is seeing great success on a clinical level. The videos of patients who found relief with this treatment brought me to tears.

So. There is hope.
Posted 10/10/2015 9:52 PM (GMT 0)
Thanks for your words of encouragement, with IBD the adventure never seems to end :) On the positive side, my periods of remission are times I will never waste and no matter how crappy this gets, over the years I've visited cancer patients and friends who have passed, there are always worse things.
Posted 10/11/2015 12:34 AM (GMT 0)
Ugh, frustrating news indeed! So I was originally diagnosed with Crohn's due some evidence of inflammation in the terminal ileum, though my only tangible symptom at that time was rectal bleeding and much lower, obvious inflammation. No other GI has found active inflammation in that area across my many scopes and each subsequent GI has treated me as if I have UC, due to the pattern of how my inflammation develops and appears in the colon. However, biopsies do show that tissue in the TI shows evidence of having been inflamed at some point. I have responded, generally, better to treatments and protocols aimed at UC rather than Crohn's.

So, a bit like your case just backwards! Glad you have a good attitude about it :) Really all we can do at the end of the day.
Posted 10/11/2015 1:46 AM (GMT 0)
I am often confused by this too. My terminal ileum has been involved for years now and my doctor says on my medical records I have crohns colitis. I never know what to believe! I can't absorb nutrients for crap and my doc says the ileocecal valve syndrome happens with crohns patients. Either way, my treatment stays the same as yours probably will too. Makes me very hesitant to ever have surgery.
Posted 10/11/2015 1:47 AM (GMT 0)

beatUC said...
My latest colonoscopy now shows that I have Crohns which is activity in the small intestine. Has anyone else had this diagnosis? I'm wondering if my symptoms will change because the small intestine is involved or if my flares will happen as before. This is quite a shock after almost 20 years of UC, darn good thing I didn't get my colon removed as I was advised to do multiple times...

Were you given a diagnosis of Crohn's, or were you just told there was inflammation in the terminal ileum? Ileitis is not indicative of Crohn's if you have ulcerative pancolitis continuous with the ileitis.
Posted 10/11/2015 1:52 AM (GMT 0)
I had some inflammation in my ileum when I was doing really badly and I don't think they suspect Crohns based on my scope and pathology reports from the biopsies.
I'm sorry that you are going through this and I hope your treatments will be successful
Posted 10/11/2015 2:56 AM (GMT 0)
If terminal ileum is involved worth it to get tested for MAP not a tough call, simple blood test. More difficult to find M.D.s/G.I.s to work with you in anti-MAP therapy.
Posted 10/11/2015 3:13 AM (GMT 0)

bananagirl said...
I am often confused by this too. My terminal ileum has been involved for years now and my doctor says on my medical records I have crohns colitis. I never know what to believe! I can't absorb nutrients for crap and my doc says the ileocecal valve syndrome happens with crohns patients. Either way, my treatment stays the same as yours probably will too. Makes me very hesitant to ever have surgery.

Crohn's colitis means CD inflammation is in the colon, UC inflammation looks different than CD inflammation, it's patchy and can go deeper in the lining with CD but UC doesn't go deeper and isn't patchy inflammation...CD can affect more than one area of the GI tract at a time. Or there's the small chance (2%) you fall into the category of having both CD and UC.
Posted 10/11/2015 3:19 AM (GMT 0)
pb4, yes i know what the difference is. i think he just says crohns because of the small intestine and stomach inflammation. he says my colon looks like UC.
Posted 10/11/2015 3:29 AM (GMT 0)
Weird...maybe you do have both banana, that would suck! Have you ever had a fistula? If you have then I'd lean more to it being just CD, some docs don't navigate the difference between CD and UC inflammation very well...especially if it's not running through the layers, it doesn't always with Crohn's, it's just more likely to...but the pattern is always patchy with CD either way, so long as you can keep flares controlled for the most part, that's the main goal.
Posted 10/11/2015 7:40 AM (GMT 0)
My diagnosis was UC for about 10 years - then got changed to Crohns. Tbh I couldn't care ... Don't want either and treatment is pretty much the same until that is, the surgery question. I was told that my Crohns had masqueraded as UC... No one invited me to the ball!
Posted 10/11/2015 11:39 AM (GMT 0)
I had proper Crohn's in the terminal ileum and UC-like Crohn's in the colon. Once or twice my doctors have seem a bit confused by my disease presentation, but I don't know why 'cos I never asked - annoys me now that I never did. Anyway, the reason I said UC-like Crohn's is 'cos I've never had a fistula or perianal disease, both of which seem to be pretty common in Crohn's colitis.

I eventually developed a bad stricture in the terminal ileum, which almost certainly would have been resected even if my colon had been hunky dory. But it wasn't, so my surgeon removed my terminal ileum and colon at the same time. I didn't want my colon removed, but I didn't really have much choice either: only constant steroids were keeping me from emergency surgery.

pb4 said...
.but the pattern is always patchy with CD either way

I didn't have patchy inflammation in the colon, but it was always called Crohn's colitis in the colonoscopy reports. I don't know if it was possible I had both UC and Crohn's - nobody ever said I did.

Post Edited (NiceCupOfTea) : 10/11/2015 5:47:23 AM (GMT-6)

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