Might not have had Crohn's colitis after all

I'm almost convinced that what I actually had was indeterminate colitis with Crohn's disease of the terminal ileum.

What prompted this was an appointment with my surgeon last Thursday, where for about 10 minutes my Crohn's diagnosis was revoked. I heatedly disputed this. To cut a long story short, it turned out she'd forgotten that I'd had Crohn's in the terminal ileum. Luckily she found her old notes which said I'd had "obvious" Crohn's in the terminal ileum, otherwise I'm not quite sure how I would have got her to believe me. All I know is I wouldn't have let it drop: I had a stricture for god's sake, I had obstructions. Results from past colonoscopies and MRI scans showed Crohn's of the terminal ileum.

But the colitis part seems to be considerably more uncertain. Apparently the pathology shows I'm missing some features of Crohn's colitis. In the end, the discovery of her own notes closed down any further discussion - she said she had been wrong and I had Crohn's, that was that. I asked about indeterminate colitis and UC. She said, no, it was Crohn's. She just wouldn't talk about it any more after that: she's about as stubborn as I am.

I was about to say it hardly matters any more, but in a way it still does, as the MRI scan showed I was flaring in my rectum. Only now I'm not sure if it's Crohn's or something else. Arguments against Crohn's (for me) is that I've never had any abscesses or fistulas: this seems to be a rarity for Crohn's colitis. Arguments for Crohn's is that I've always had relative rectal sparing and worse disease in the right/transverse colon. Not sure about other features, as I've only got the pathology report to go on. Stuff like transmural inflammation (which I had) apparently is a feature of indeterminate colitis severe enough to require a colectomy.

So yeah. To be fair to my surgeon, she did order up a flex sig and spent some time talking to me about more personal stuff, which she didn't have to do. The flex sig was marked as 'urgent' so I don't even have to wait weeks - having it next Monday. More fun with tests. Waiting for some mesalazine enemas as well - it's the usual bureaucratic cock-up going on there.

tl;dr: see the first line of my post.

I have a similar situation. My symptoms started only recently in Oct. Had Sig and endoscopy done right away. Sig showed indeterminable UC and GI put me on Lialda + mesalamine enemas. Few weeks later I had an MRI, which showed "enhancement of terminal Ilium, w/o thickening. The report concluded that it's mild chrones colitis. GI wanted to do a Colonoscopy to make sure before giving me other meds. So had colonoscopy 2 weeks ago, she didn't see anything in the Terminal illium. But she still saw inflammation in the colon plus few other areas with granularity, friability and erythema w/o bleeding. She still thinks its Crohns. I started Uceris and continuing with Lialda. Don't see any improvements. Will call to find out pathology results.

My symptoms: D, Blood (better than in October, but still there), mucous, occasional lower backache very mild.

I don't know what to think colitis or crohn's Since Crohns is a systematic condition it scares me more.

LondonRed - Well, the newest line of thinking is that Pentasa (and mesalazine in general) is virtually useless for Crohn's disease. It's a topical med which only treats the inner lining of the bowel, but Crohn's goes through all the bowel layers, so... I never got a chance to find out if oral mesalazine would have worked for me, because I simply couldn't tolerate it. Oddly enough, I had diarrhoea but never any rectal bleeding - it's weird how these things pan out.

Lexima - I wouldn't worry too much about Crohn's. Crohn's colitis is usually quite clear cut, as is UC. But when the colitis falls into that grey zone between the two, then it seems to behave much more like UC than it does Crohn's. I think that's why I haven't had any abscesses or fistulas despite my colitis eventually ending up ultra severe.

iPoop - Well, it looks like I'll be jumping on the med merry-go-round, joy of joys. I'll know more when I've had the flex sig - should be seeing the surgeon some time next month. For one thing I suspect I have a stricture at the sugical join. The MRI couldn't confirm or rule a stricture out, so this is partly what the flex sig is for. I'm also not sure how bad the inflammation is - my surgeon seemed to think it was pretty active, judging from the number of lymph nodes. Basically, if it's not Crohn's then I'm hoping the enemas might actually work. If I'm not intolerant to the mesalazine in them.

NCOT, You have not had it easy, that's for sure! let us know what she has to say after your flex sig next week.

I have used mesalazine all my life with CD and it has always worked; even this time it has got rid of the bleeding and made it really mild... my CD; God willing: has no granuloma so doesn't go through the layers. My CD behaves much more like UC than Chrohns.

I see what you mean. That's why I turned down prednisone at the end of my debacle, there was nothing for me to use for maintenance, why bother getting all hopped up on pred to taper off and get sick again?

I can't handle an unsedated siig either. I seriously jumped off the bed last time and ran to the toilet. No one was happy about that move. If there is inflammation, it's extremely uncomfortable.

Pluot said...
I'm not sure why you're hung up on this -- would it change your treatment going forward at all?

Not much, but it might make mesalazine 5% less of a waste of time depending on what I have. But it's mainly just curiosity: I just want to know, so shoot me.

Pluot said...
There's no such thing as "indeterminate colitis with Crohn's disease of the TI." If you have Crohn's disease, then you don't have ulcerative colitis. Absent a non-IBD etiology (e.g. infectious colitis), colitis in a Crohn's patient IS Crohn's colitis. It doesn't have to be transmural, fistulizing, skip lesions, involve the perianal area, granulomatous, or any other hallmarks of CD. Maybe it's all academic, but current practice is that the diagnoses are mutually exclusive, even if we're talking about different parts of the GI tract.

Firstly, yes you can have co-morbid Crohn's and UC. I dunno why people keep on saying you can't, but give absolutely no reason why the two must be mutually exclusive. It's rare for obvious reasons, but it can happen. See the last post in this thread for examples: www.crohnsforum.com/showthread.php?t=47849

Secondly, how on earth do you know there isn't such a thing as indeterminate colitis with Crohn's disease of the TI? My surgeon didn't think I had Crohn's colitis - she was so sure I didn't she was prepared to revoke my Crohn's diagnosis of 15 years. She literally only changed her mind when she found her old notes and I think that was mainly to just shut me up.

Indeterminate colitis means your physician can't tell if you have Crohn's or UC. If your physician is sure that the inflammation in your ileum is caused by Crohn's, then by definition the inflammation in your colon is Crohn's as well.

If the reason you want this clarified is so that you can leverage results from the literature to better predict what will/will not work for you, then you need to use the language that is currently accepted in the medical community. In the medical community, simultaneous Crohn's and UC in one patient is not currently acknowledged -- if a patient is believed to have UC and develops Crohn's like features, their official diagnosis becomes Crohn's. Likewise but less frequently, patients with Crohn's who go through long periods of time demonstrating a lack of CD symptoms and the presence of UC symptoms may be reclassified as UC. There are a small handful of case reports from the past few decades of patients with both diseases, but it is not standard practice to use both diagnoses simultaneous. *Certainly* clinical trials are not performed with patients who are classified as having both Crohn's and UC (or indeterminate colitis + Crohn's).

Pluot said...
If the reason you want this clarified is so that you can leverage results from the literature to better predict what will/will not work for you, then you need to use the language that is currently accepted in the medical community.

Good grief, and you implied I was the one who was 'hung up' on this.

Look, I'm not a doctor okay? I never claimed to be a doctor or any other type of qualified medical professional. I'm not taking any exams that I have to pass. And I'm certainly not trying to 'leverage' results, whatever that means. I'm bored and curious - that literally is it, as far as motives for looking into this further goes.

Pluot said...
In the medical community, simultaneous Crohn's and UC in one patient is not currently acknowledged -- if a patient is believed to have UC and develops Crohn's like features, their official diagnosis becomes Crohn's. Likewise but less frequently, patients with Crohn's who go through long periods of time demonstrating a lack of CD symptoms and the presence of UC symptoms may be reclassified as UC. There are a small handful of case reports from the past few decades of patients with both diseases, but it is not standard practice to use both diagnoses simultaneous. *Certainly* clinical trials are not performed with patients who are classified as having both Crohn's and UC (or indeterminate colitis + Crohn's).

Nice way of answering my question. Oh wait, you didn't. "Medical professionals don't use those words". Oh, please. You're probably right about that, but it's literally a non-answer, i.e. "That doesn't exist because we say it doesn't exist". Er, okay? Am I meant to just take that on trust and disregard the evidence that it does exist?

On a different note, I'm too lazy to keep up with current IBD research, but my feeling is that the lines between Crohn's and colitis are becoming more blurred than they used to be. In other words Crohn's and ulcerative colitis aren't two distinct entities, but shade into one another - which is pretty much the exact opposite of what you've been telling me. The trouble is, I don't have any links to hand and I reeeally am not in the mood for searching right now - even I have other things to do occasionally.

Maybe after lunch...

DuchessCountyJim said...
NCOT- Maybe the handful of cases of patients with both diseases are growing. After my latest colonoscopy in which they took 8 biopsies throughout... my diagnosis changed from pancolitis to indeterminate colitis. Comments: The distal rather than proximal involvement suggests ulcerative colitis but the microscopic pattern of inflammation suggests Crohn's disease. This may fit the entity of indeterminate colitis. Please correlate clinically.--- Currently my symptoms aren't bad, even though I have active disease. But I am a little worried about what might happen in the future. What will happen to my mucosa, submucosa and small granulomas? ---UGH.

Thank you for posting that! In between classic UC and classic Crohn's, I reckon there's a large minority of people with IBD which could be almost anything - part UC, part Crohn's, part something else. Who knows how many subsets of IBD there are, really? I get why doctors want to slap a single label on it, but that doesn't mean it's always that simple.

It's natural to worry about the future, but try not to worry about it too much from the Crohn's/IC point of view. This is where I don't think the label matters much, in that an indeterminate label doesn't necessarily equal more severe disease. Colitis can be mild, moderate or severe whether it's UC, Crohn's or IC. Interestingly enough, my brother also has an indeterminate case of Crohn's - his disease, as far as I know, has only ever affected the rectum, i.e. proctitis. He's also had his diagnosis changed a few times, but I think it's been mostly Crohn's and he calls it Crohn's. In 16 or 17 years of having proctitis, it's never become really severe; in fact he's been in remission most of the time. He's never likely to need surgery.

(I'd like to ask my brother more about it, but we're not close and he would probably be freaked out if I stared quizzing him about it now.)

Thanks NiceCupOfTea - I don't fit the normal UC profile - D, Bloody D, Lots of Mucus and Urgency - but I have inflammation and mild bleeding. I don't fit the class Chrohns - D, Granuloma, Pain etc. but I have inflammation and mild bleeding. Non Specific Colitis is something I have been diagnosed with before and I think it is a cop out when people label you for the sake of getting you on meds and off their case. The docs don't know enough about IBD and lumping everyone who has bowel inflammation as generic CD or UC is a complete cop out - it's my biggest frustration.