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Need feedback from those with crohn's colitis

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Posted 12/27/2015 11:43 PM (GMT 0)
I've had UC for over 10 years. From the start my GI has dx'd me with ulcerative colitis (originally UP then pancolitis).

Just had my routine colonoscopy and it came back with patchiness again. I've had 3 colonoscopies over the years with patchiness and suggestion of "possible" crohn's colitis. I'll list the results:

2015: descending colon colonic mucosa showing moderately active chronic colitis, consistent with IBD, no dysplasia or granulomas identified. Sigmoid colon colonic mucosa with focal active colitis. Cecum patchy erythema noted, colonic mucosa within normal limits. All else normal limits including rectum.

2007: transverse colon mild to moderate active chronic colitis with focal crypt rupture reaction. No granulomas or dysplasia identified.
Descending colon moderate active chronic colitis, no granulomas or dysplasia. Rectum mucosa with minimal evidence of prior chronic injury, rare paneth cell metaplasia. Cecum mucosa with occasional neutrophils in surface epithelium. Comments by pathologist: although the changes in the biopsy samples could be consistent with ulcerative colitis with distal treatment effects, the relative rectal sparing also raises consideration for crohn's disease. The clinical history of crohn's disease is noted.

2006: hepatic flexure inactive chronic colitis. Transverse colon inactive chronic colitis. Splenic flexure slightly active chronic colitis. Descending and sigmoid colon mildly active chronic colitis. Rectum mucosa with preparation effect. Pathologist comments: The rectum appears normal, with the exception of prep effect and this is mostly the result of rectal mucosa healing following therapy for UC. Clinical correlation is required to rule out crohn's disease. No evidence of granlulomas or dysplaisa.

All along my GI has been sticking with the UC DX because I don't have any other crohn's indicators (granulomas, fistulas). He always believed i had areas of healing due to my meds healing those areas faster than the other areas were being healed. But this latest result has made him lean towards crohn's colitis though he is not committing to it entirely it seems.

This whole thing is bothersome to me. Not because it matters with the course of treatment...it's been the same for the past ten years. But for my own edification, I would like a definitive diagnosis. It is important if surgery is ever on the table. And, well, just because I'd like to know.

My question is...do any of you have a definitive dx of crohn's colitis, but your only indicator is patchiness? Do you have an absence of the other clinical symptoms?
Posted 12/27/2015 11:48 PM (GMT 0)
have they ever scoped or checked out your small intestine?

most of the IBD treatments are the same as you mentioned aside for Simponi not being approved for Crohns Disease and cimzia and tysabri are not approved for UC
also surgery is different with the two because with Crohs disease they like to save as much intestine as possible and with UC they usually take out the entire colon
Posted 12/28/2015 12:04 AM (GMT 0)
I have crohn's colitis but my CD was very apparent in the way it looked via scope, biopsies and perianal crohn's skin tags (which is actually how my CD initially presented itself when I was a teen but was oblivious to the fact and so was every doc that saw the perianal crohn's skin tags, which all docs kept telling me they were hemmies which they in fact were not) I don't blame you for wanting a definite answer but keep in mind, the same meds used to treat crohn's colitis are used to treat UC as well as proctitis (inflammation in the rectum).

By the way, it wasn't until about a year and a half after having my first baby that my CD broke out internally with fury and my perianal crohn's skin tags still were misDX as hemmies and while they were flaring (large and hard) they were banded which kept them from ever shrinking back down on their own (as they periodically would do while I was a teen--with no other CD symptoms-- until as I mentioned above, after having a baby).

One other symptoms of true CD is that I developed a recto-vaginal fistula a few years ago but thankfully Humira has cleared that up as well as my inflammation in my colon and rectum, sadly it hasn't helped my perianal crohn's skin tags as my GI hoped it might.
Posted 12/28/2015 1:16 AM (GMT 0)

RockerGirl said...
My question is...do any of you have a definitive dx of crohn's colitis, but your only indicator is patchiness? Do you have an absence of the other clinical symptoms?

Yeah, I have never had fistulas or (I think) granulomas either. I also had the relative rectal sparing. I don't know the details, but pathology-wise my colitis apparently didn't have the key features of Crohn's. My surgeon even tried to revoke my Crohn's diagnosis, until she discovered her notes which said I had obvious Crohn's of the terminal ileum. She changed her mind after that and said I definitely had Crohn's.

I'm assuming colonoscopies have shown your terminal ileum to be clear. It's possible - but not likely - you could have Crohn's beyond the reach of a colonoscope. If you've never had disease in your small bowel, and if your diagnosis is this indeterminate, you should still be a candidate for j-pouch surgery should it ever come to that. People with indeterminate colitis have a much better prognosis than people with definite Crohn's colitis.

Apart from me, but I've always been amazingly unlucky.
Posted 12/28/2015 1:50 AM (GMT 0)
@Dikid - I've had upper endoscopies and in 2007 when hospitalized for my UC I had an upper & lower GI catscan. All negative which to me means nothing b/c I was in a severe flare & the catscan of the colon at the time didn't show inflammation either. Meanwhile they were talking surgery I was so sick.

@Pb4 - No anal tags on me ever, just internal hemmies. Yours sounds very clear cut since you presented with many of the indicators.

@NCOT - Yes, terminal ileum always clear. Who knows WTH could be happening in my small intestine. You are not alone in the unlucky category. Things for me are never simple. If there is a worst case scenario or something that is highly unusual it seems to find me. That must be why I always relate to your posts.

Thanks for the replies!
Posted 12/28/2015 8:12 PM (GMT 0)
My GE said he won't ever write "crohns" in my chart until it's 100% without a doubt crohns. He said once it's written once no doctor will ever think it's not crohns or bother to examine it as anything other than crohns. He's got me diagnosed as "IBD indeterminant" I'm sometimes frustrated by this "diagnosis" but I'm also thankful he's not just rushing a label n it which will stay with me forever. My last scope showed very clear cut ulcerative proctitis, however, a previous scope showed only inflammation from the 15cm onward mark...which UC would not present like this (wasn't on meds at that time). Anyways, a label isn't always the most important thing.
Posted 12/28/2015 8:20 PM (GMT 0)
When I was first diagnosed with Crohn's-Colitis it was very easy for them as the inflammation was quite deep into the tissues and everywhere throughout. My Gi said Crohn's Disease for sure prior to any results even coming back. Actually she didn't complete the procedure in full because she was worried about perforating the bowel because the inflammation and tissue damage was so bad.

A few years later I started Remade, and eventually had to stop it. When the inflammation and eventual flare returned from stopping I happened to have a colonoscopy scheduled. This was with a new GI. They new GI went through the images from this scope procedure with me. He remarked at how much it looked like full blown Ulcerative Colitis. My colon was full of these ulcers all over the place. I remember being shocked when I looked at them.

A few months later yet, after some meds (Pred, Antibiotics, Methotrexate) I had another colonoscopy. This time my colon looked a lot different in the images - it was full of these red dots everywhere, and really patchy or spotted all over. No ulcers anymore. Just really red and sore looking...

This probably does't help any, but sometimes it can be difficult for them say one or the other depending on the current state of your disease. You get this 'on the fence' type approach. My second GI would have said I had Ulcerative Colitis, had that actually been the first time.

I have never had any small bowel involvement as far as I am aware. Always isolated to the colon. Though I have had all the typical small bowel tests and scans etc.
Posted 12/28/2015 9:44 PM (GMT 0)
Mark, yours definitely sounds like crohn's colitis and CD doesn't necessarily ever have to affect the small intestines in order for one to have CD....

There are 5 subtypes of crohn's disease, an easy google search.

UC often starts in the rectum and moves up into the colon, but that's not necessarily written in stone either...such a nasty thing IBD is, regardless of which type!
Posted 12/28/2015 10:23 PM (GMT 0)
@Mark - this latest colonoscopy when my GI discussed the results & said it was patchy, the first thing I asked was "does this mean that we're looking at crohn's?". My GI replied that the inflammation wasn't that deep so he wanted to wait on the pathology report. I also looked at the scans and didn't see ulceration this time which is completely unusual for me. It looked red and sore like you described. I asked about the presence of any ulcers because I hadn't had any blood in my stool. My GI didn't really answer that question either. I think my case has him undecided. He kept saying he wanted to wait for the pathology report. When he finally got the report, he still didn't commit other than to say we have been looking in the direction of crohn's colitis for awhile now.

Other than the last few weeks having the bad abdominal spasms that for me always precede a flare, I haven't had anything else out of the norm. I was actually kind of surprised to find I am flaring because I am having 1 formed bowel movement per day and I hadn't had any blood or mucous. This is highly unusual for me as I quickly go into the bloody diarrhea mode. Maybe because there is no rectal involvement right now.

I'm also kind of frustrated that we haven't increased my meds to get rid of this inflammation before it gets worse. I understand his thinking, usually my next med would be pred since I'm on the max of colazal, and he doesn't feel the symptoms warrant pred right now. However, I know what's coming since I never spontaneously come out of a flare. It only gets worse until I go on the pred short term. In the meantime I have to play the waiting game while I spasm away...
Posted 12/28/2015 11:40 PM (GMT 0)
I think the diagnosis just isn't always clear. I am still technically indeterminate, and I don't expect to know, at least at current levels of knowledge of these diseases. My symptoms always looked like UC -- lots of urgency and bloody diarrhea. I was first diagnosed with UC, then had patchy scopes, so it was changed to probably Crohn's colitis. At one point, flagyl and cipro helped a flare, so that was further evidence of Crohn's. I got a rare skin condition that biopsied as cutaneous Crohn's. My immune system was haywire, I'd gone through all the drugs (at the time), had boils all over my body, a painful eye condition, and then a 104.6 fever while on two immunosuppressives, and finally decided I was done, that I wanted surgery. My GI recommended a proctocolectomy with permanent ileostomy. The surgeon grilled me about making sure I understood it couldn't be reversed, but also said that if I wanted a j pouch, I'd have to go to Cleveland to get it (I was at Mass General, in Boston), that they don't do them on people who likely have Crohn's. I just wanted to be done. I had the surgery.

The pathology from my colon showed no sign of Crohn's, and I've had no signs of Crohn's in the five years since. Talked to my gi, and he thought that even if I had UC, he thought it likely it was a "Crohn's-like" variant, and I would have been more likely to have a failed j-pouch. Now it really doesn't matter so much. Hope it was UC, then I don't have the possibility of small bowel Crohn's hanging over my head, but that's also not very likely given that I haven't had it yet.

Even though I've had more than my share of surgical complications -- butt wound that didn't heal for a long time, obstructions, a hernia -- the surgery gave me my life back and I'm grateful for it every day. I don't take any poison drugs anymore and other than the times I've had the complications, I've been healthier than I ever expected to be again.

I think I probably wouldn't have chosen the j pouch had it been an option. At the time I just wanted one surgery and I didn't care about having a bag (the one surgery thing didn't work as planned).

My gi has said that Crohn's is probably really twenty different diseases and UC is ten (although he says others would say it's all really one disease).

In any case, I hope you find a non-surgical route to better health.... I just wanted to chime in to say that even if surgery enters the mix, you can still make decisions without a definitive diagnosis. When I decided on surgery I asked myself how I would feel if they cured IBD in a year.... my answer was delighted, but I couldn't wait a year. Didn't happen, of course... but part of having so much that's unknown about these diseases is that some people don't get a definitive diagnosis.... sigh.

Hope you feel better soon.
Posted 12/29/2015 1:36 AM (GMT 0)

RockerGirl said...
@Mark - this latest colonoscopy when my GI discussed the results & said it was patchy, the first thing I asked was "does this mean that we're looking at crohn's?". My GI replied that the inflammation wasn't that deep so he wanted to wait on the pathology report. I also looked at the scans and didn't see ulceration this time which is completely unusual for me. It looked red and sore like you described. I asked about the presence of any ulcers because I hadn't had any blood in my stool. My GI didn't really answer that question either. I think my case has him undecided. He kept saying he wanted to wait for the pathology report. When he finally got the report, he still didn't commit other than to say we have been looking in the direction of crohn's colitis for awhile now.

The inflammation does not have to necessarily go deep in order for a proper CD diagnosis, sounds like that GI is way too unsure of himself...polyps/ulcers (almost one in the same thing really) aren't necessary for a proper DX of CD or UC, often there's only inflammation, it's different for everyone and can be for each individual person's flare each time around. But seriously your GI sounds pretty flaky to me IMO.

Posted 12/29/2015 2:42 AM (GMT 0)
@pb4 - My GI is actually great and I trust him implicitly, even though he is sounding "flaky" in this situation. I just think he is very reluctant to change his dx from UC to crohn's colitis. He is not convinced I guess. It is just frustrating not knowing for sure which it is.

@blueglass - thank you for sharing. Interesting that your GI thought it was a crohn's like variant. Seems the more they know about IBD the less they really know. I wouldn't be the least bit surprised to find one day that UC & CD are really one disease with many different variants.
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