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New GI doctor and new diagnosis??? Need input!

KatyBuckeye

KatyBuckeye

In early July, I was diagnosed with Crohn's disease following a month of acute diarrhea and several years of non-specific GI symptoms (really, really bad gas, bloating, pain in the RLQ). I had a bad experience with the GI that diagnosed me, as she wasn't listening when I told her that Lialda drastically increased my symptoms. So, I switched GI docs and had my first appointment today. The new GI tells me that he can't believe they diagnosed me with Crohn's from looking at the biopsy results and my symptoms. He believes a more accurate diagnosis is microscopic colitis (probably lymphocytic). I am completely blown away, as I have come to accept the Crohn's diagnosis and I think it makes sense based on other symptoms that I've had (extreme fatigue, joint pain, the pain in the RLQ). These other symptoms date back to my teenage years, although they've gotten worse with the current flare I'm having). I agree with the new GI that the biopsy results don't scream Crohn's disease...but I'm just not sure I should be accepting of his new diagnosis. Crohn's really seemed to make sense and fit with all of these other symptoms I've had. The new GI does not know what to think of these other symptoms and wants to refer me on to other specialists for the joint pain and fatigue issues. He wants to treat the GI stuff with Immodium. Has anyone gone through a change in diagnosis? I don't want to get my hopes up, as this GI made it seem as though it should be a relief to be diagnosed with microscopic colitis versus Crohn's. He said I would not have to take medications for the rest of my life--no Humira or Remicade. No need to worry about surgery...

Thoughts?
 
Clash

Clash

I think David might can give you more insight about microscopic colitis maybe he will drop by. Hope you get definitive answers soon!
 
David

David

Co-Founder
Location
Naples, Florida
I'm diagnosed with Lymphocytic Colitis. It's no walk in the park but I'll certainly take it over Crohn's. Do you by chance have a copy of your biopsy results? I'm curious what he read that makes him think LC.

I forget, have you made any dietary changes with all this you've been going through?
 
KatyBuckeye

KatyBuckeye

The biopsy results:

"1. Biopsy terminal ileium: Benign mucosa, significant change is not seen.
2-3-4-5-6. Biopsies ascending, transverse, descending, sigmoid colon and rectum: Benign mucosa with mild acute colitis- cryptitis noted. No other changes are seen.
7. Biopsy rectosigmoid polyp: Portions of inflamed granulation tissue noted. No mucosa noted.

Comment: Minimal active colitis with inflamed granulation tissue suggest the possibility of inflammatory bowel disease- Crohn's. Clinical correlation suggested."

The new GI says that he doesn't believe it to be Crohn's because there were no chronic changes- just the acute colitis. I asked him if it were possible if the Crohn's was just caught very early before there was time for chronic changes to be seen to the mucosa, etc. He didn't seem to think so. What I didn't ask him is if it is common to see inflammatory polyps with lymphocytic colitis. Do you know? Were your biopsy results similar?
 
David

David

Co-Founder
Location
Naples, Florida
I'm no pathologist, but I'd love to know how he got LC from that, especially considering there was no mention of... well... increased intraepithelial lymphocytes. Here's how collagenous colitis (much like LC and some argue is simply more advanced LC) and LC present:

Collagenous Colitis

At low power, biopsies of collagenous colitis will often show a pink subepithelial "stripe" with an intact crypt architecture and an increase in superficial lamina propria mononuclear cells. At higher magnification the lamina propria will show increased plasma cells and eosinophils and the surface epithelium will have a patchy infiltrate of intraepithelial lymphocytes with areas of surface damage. The surface epithelium may also be stripped off of the thickened collagen table, making it harder to make the diagnosis. The subepithelial collagen usually blends imperceptibly with the basement membrane to form a hypocellular pink band that often entraps small capillaries. The thickness of the collagen often varies from site to site in individual patients and should only be evaluated in well-oriented sections. The normal basement membrane of the colon measures 2 to 5 microns, while in collagenous colitis the collagen typically has a thickness of 10 to 30 microns. Biopsies from the rectum and sigmoid colon may show less thickening and may be in the normal range. When in doubt a trichrome stain can be used to highlight the collagenous band and show the irregular nature of its lower border (a feature not seen with normal basement membrane). Care should be taken not to over interpret a thickened basement membrane, as CC. Surface epithelial damage with increased intraepithelial lymphocytes should always be present in cases of collagenous colitis. Intraepithelial neutrophils may be seen, but they are usually less prominent than the intraepithelial lymphocytes. Large numbers of crypt abscesses are probably indicative of either superimposed infection or a separate diagnosis such as ulcerative colitis. Paneth cell metaplasia may be a marker of collagenous colitis that is more refractory to therapy.

Lymphocytic Colitis

In general, lymphocytic colitis looks just like collagenous colitis without the subepithelial collagen table. The surface epithelial damage with increased intraepithelial lymphocytes is often more prominent/intense in lymphocytic colitis. Just as in CC, there is generally a superficial plasmacytosis without crypt distortion in LC. There may be fewer lamina propria eosinophils in LC than are seen in CC. The surface damage and lymphocytosis may be patchy while the lamina propria plasmacytosis tends to be diffuse. The pathologist must avoid evaluating the number of intraepithelial lymphocytes overlying a lymphoid follicle, as one should normally see numerous intraepithelial lymphocytes there. One should also recognize that normally there are more intraepithelial lymphocytes in the right colon as compared to the left colon. A few foci of cryptitis or a rare crypt abscess may be seen in LC, but more neutrophilic inflammation than this suggests another diagnosis. Recently it has been recognized that some cases of lymphocytic colitis have less surface damage and more intraepithelial lymphocytes in the deeper crypt epithelium. Another variation of LC has been described with collections of histiocytes and poorly formed granulomas underneath the surface epithelium.
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Your biopsy doesn't scream Crohn's either. It doesn't scream much of anything based upon my limited knowledge so take that as you will. From my understanding, just the colonoscopy prep can set off acute inflammation.

*edit* I just looked that up (the colonoscopy prep causing acute inflammation):
Oral sodium phosphate solutions have also been associated with histologic changes in the colon. Small aphthous lesions have been seen endoscopically which histologically show foci of cryptitis and apoptosis centered around lymphoid aggregates. These changes can easily be misinterpreted as smoldering Crohn’s disease, infectious colitis or graft versus host disease.
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*edit 2* -- Are you feeling any better on the Specific Carbohydrate Diet?
 
KatyBuckeye

KatyBuckeye

Wow, this is just so confusing.

I am following SCD/GAPS and I am feeling so much better! Especially now that I stopped the Lialda, it seems like the diet is finally working. Earlier this week, I had my first formed BM in months...but it was followed by a really bad day of diarrhea on Tuesday (I think I got overly excited and ate too many nut products on Monday). I haven't had a solid BM since then, but the diarrhea seems to have slowed to once daily or every other day. I am having really bad joint pain though and the diet doesn't seem to be helping that. The fatigue is slightly better in the last few days. Have you ever had joint pain with your LC, David? Thank you for your insight into this.
 
KatyBuckeye

KatyBuckeye

michaelearnest said:
It sounds like the 2nd GI is a good one?
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I'm not so sure. It wasn't my choice to go to this particular specialist (forced by my HMO insurance) and I'm not sure that I trust his opinion. Sure, it would be wonderful if it turns out not to be Crohn's...but some things just don't add up. I tried Immodium early on with my diarrhea and it didn't do anything. He has no explanation for the mouth sores I experienced around the time of my diagnosis or the pain that I have in the RLQ (typical of Crohn's). I've been through the ringer with bad doctors and I don't want to blindly trust this GI. I feel like he's getting my hopes up and it would be so disappointing to go along with thinking it's something less serious than Crohn's to find out (perhaps years later after signficant damage is done) that it really is Crohn's. I need to figure out a way to get around my HMO insurance and be seen by a Crohn's specialist at a teritary care center.
 
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