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Could they give me a wrong diagnosis?

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Crohn's Disease
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Posted 1/8/2013 12:52 AM (GMT 0)
I'm a bit desperate as I am quite sure is Ulcerative Colitis, as I have just all the symptoms of Ulcerative Colitis, but my surgeon, following all the pathologists diagnosis (4 colonscopies in 13 years), believes it's a Crohn's. The fact is that the pathologists, from 2010, "switched" their diagnosis to Crohn's, but they never were sure. They just continued to give us doubts, writing something like "possibly Crohn's" or "it could be Crohn's", and also, after the colectomy, the conclusion was "it's an IBD, and could be Crohn's"; but my fear is that they can't decide and so, they follow the first who said could be Crohn's and noone wants to change this diagnosis again.

The fact is that I have all the Ulcerative Colitis issues, and no Crohn's issue: so the disease involves the whole colon and rectum, there are no normal tracts (no segmentary); the ileum is always completely healthy; I had no fistulas, no abscesses, and the anus zone is always healthy. I had big ulcers (when I had a colon) and they found no granulomas; they say it could be Crohn's, because they saw something "segmentary" but where there were the ulcers they saw a brownish mucosa (don't think it's normal);

Can an IBD be a Crohn's, if all the symptoms are Ulcerative Colitis?

Do you think I should change all my doctors (surgeon, gastroenterologist, patologist)?
Posted 1/8/2013 1:03 AM (GMT 0)
It's pretty hard to tell the symptoms from UC from Crohn's colitis, so I don't think going by symptoms alone helps a lot. In about 10% of cases, doctors can't decide if it's UC or Crohn's, so they call it Indeterminate Colitis - that, or they keep on switching between a UC and a Crohn's diagnosis. about 20% of all Crohn's cases are confined to the colon only, so lack of terminal ileum involvement is not enough to rule out Crohn's. Nor are lack of fistulas or abscesses, as only some with Crohn's get those complications.

Long story short, you sound like you are firmly in the Indeterminate Colitis camp. Which means you could still have Crohn's, since IC does not rule out the possibility of Crohn's: it just means the doctors can't decide which IBD you have. I can't remember your precise situation: you have had a colectomy already, haven't you?
Posted 1/8/2013 1:04 AM (GMT 0)
Why are you so concerned about this? There's a percentage of "indeterminate" on the two because they can be similar. The treatments are very similar. What's causing your worry?
Posted 1/8/2013 2:24 PM (GMT 0)
in response to the two friends above, I'm concerned as I had first colectomy and second should be IRA (ileorectal anastomosis) or IPAA (ileo-pouch-anal-anastomosis).
Posted 1/8/2013 5:10 PM (GMT 0)
In that case you are right to be concerned :-/

A Crohn's diagnosis almost automatically rules out an IPAA. Almost, but not quite. Some surgeons will go ahead with one if the patient has never shown any sign of disease in the small bowel. I don't know about the IRA (that is actually something I am going to ask about for myself, but I digress); I would imagine similar rules apply, but to the rectum <_<.

In short, you are taking a slight risk with an IPAA, but it's not a massive risk so long as you've never had any disease in the small bowel. I cannot remember offhand the stats for Crohn's returning in Crohn's colitis patients who've had a colectomy, but they are pretty favourable: something like 90% were still disease-free 10 years later if I recall correctly. If you want I can try and find a study, but I feel a bit too lazy to do it right now.
Posted 1/8/2013 9:30 PM (GMT 0)
Yes, I know it.
I never had any problem nor in my small bowel, neither at the anus zone.
I could go for IPAA, but I believe I prefer not to take the risk at the begin, and try the IRA; if I make the IRA, in the future I could always go for IPAA, not the contrary. Obviously, I want to mention this to my surgeon, just in case he makes something which could impair a future IPAA (don't think something exists, as many women suffering UC ask for IRA to get pregnant, and in the future are open to IPAA); trying the IRA could lower my risk to take a permament ostomy, as if I'd go straight for IPAA, in case my j-pouch would fail, I'd have no chances apart ileostomy.

the fact is that, because of my disease, which the colonscopies say take the full colon, and the rectum, but not the small bowel, neither the anus and without strictures, and fistula, and all the common Crohn's manifestation, I believe it's UC. If It'd be UC, I'd go for IPAA without worries, that's not the case of Crohn's.

I firmly believe someone in the past put the doubt it's Crohn's, and then noone wanted to take the responsibility to change this "fact", although noone ever said firmly it's Crohn's.

I'm enough lucky to have found an expert in my area who will give a look to my tissues, and hopefully he'll give me some clear fact about my disease.
Posted 1/8/2013 9:46 PM (GMT 0)
I'm probably missing something obvious, but for an IRA wouldn't you want to be disease-free in the rectum? Won't you still be dealing with disease there afterwards, unless the meds work? The IPAA gets rid of the rectum, since the end of the small bowel is fashioned as a new 'rectum'.

Anyway, not sure what to say, since I don't know how you intend to cope with rectal disease and an IRA :-/
Posted 1/8/2013 10:14 PM (GMT 0)
You are right, but if you look for the various studies they made, IRA was a good choice also for Ulcerative Colitis, at least in the opinion of many surgeons.
And in UC the rectum is always involved.

My doctor say that a rectum is more easily treatable that the entire colon, so if you get the IRA for crohn's, you have a chance to see meds which before didn't work, working.

Plus, during the surgery period, the rectum rests, and it get's a bit of healing, which according to them can "push" the therapies when you are reversed.

The main controindication for IRA in rectum-involved Crohn's, are:
1) anorectal involvment (above all, if there are fistulas or abscesses)
2) impaired retaintion (if your sphincter is not working well anymore)
Posted 1/8/2013 10:22 PM (GMT 0)
I dunno about a rectum being more easily treatable; I've certainly seem some stubborn cases of proctitis :-/

But that said, you have got me interested in IRA! I was told straight-out, by both the surgeon and gastro, I could not have an IPAA, which I accepted, but neither of them even mentioned the IRA. I'm intrigued by this possibility for myself, as I do not have anorectal involvement that I know of.

This doesn't help you very much, sorry :-/ But thanks for potentially helping me :p
Posted 1/8/2013 11:28 PM (GMT 0)
Yes I don't know what is meant by "severe rectal disease";
yesterday I found this study that could be interesting, above all when it reports the fate of people with ano-rectal involvment in biological era. Check it.
https://www.ecco-ibd.eu/publications/congress-abstract-s/item/189.html
Posted 1/9/2013 1:33 AM (GMT 0)
Yeah, the biologics are definitely effective for Crohn's. Can't say I like them very much from a personal point of view, but they do work - for most people, if not all. Have you been on a biologic yet?
Posted 1/9/2013 6:28 PM (GMT 0)
Yes, only on Humira, and it didn't work.
But as I said, it's not impossible topical steroids, topical suppositories or biologics, would work now.
Posted 1/9/2013 9:29 PM (GMT 0)
Been on Remicade, currently on Humira - the former didn't work, the latter shows no sign of working.

But yes, it's possible that after surgery things might change, and that meds which didn't previously work might work. I hope that's the case for you. I certainly hope it's the case for me, otherwise I'm screwed... :-/
Posted 1/11/2013 10:38 PM (GMT 0)
I assure you that living with a bag is not the end of the world. I'm currently on it, and adapting it.
The only issue I found at the moment is being seen, noone saw me and I am reluctant. Perhaps it should be not a great problem with intimacy if someone loves you.
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