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Ulcerative Colitis
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Posted 8/8/2023 2:59 PM (GMT -5)
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Post Edited (Midge22) : 1/29/2025 5:50:28 PM (GMT-5)

Posted 8/8/2023 3:29 PM (GMT -5)
I have to wonder if your dr was looking at the wrong biopsy report. Do you have a copy of the biopsy report, if not I would get a copy. I would then discuss this with the dr. Something is not right.

Are you having any issues & what meds are you on?
Posted 8/8/2023 4:31 PM (GMT -5)
Do you have photos from your colonoscopy? Then you can see for yourself. Severe inflammation is visually quite different from mild inflammation! Also, severe inflammation usually produces more severe symptoms...
Posted 8/8/2023 7:35 PM (GMT -5)
A pathologist can only see the biopsy fragments, and nothing else. So the pathologist is speaking from what the biopsies say.

A gasteroenterologist makes a colonoscopy report based on what they saw during that procedure. Ultimately a diagnosis by your gasteroenterologist also considers the pathology report.

Mild features in a colonoscopy report might be erythema/redness as an example. Severe examples in a colonoscopy report might be ulcers, and severe inflammation that the scope cannot pass through.
Posted 8/9/2023 12:36 AM (GMT -5)
Whoa!!!! That is quite a divergence in post-scope reports. You're totally justified in pursuing an explanation for that. Could it be that the patient pathology specimens got mixed up on their way to the lab? (With incorrect patient labels or such.) Definitely ask your doctor about this situation. / Old Hat (40+ years with left-sided UC; in remission taking Colazal)
Posted 8/9/2023 6:30 PM (GMT -5)
I’ve had somewhat similar discrepancies between visual by dr and path report— although not as wide as yours. I don’t know if this is true or not, but to me seems like the path report should bear the most weight, as healing on the microscopic level can take longer and not ne as visible. That’s what happened to me as I was entering remission. The dr said visually he didn’t see any inflammation. But the path report still showed mild disease at the microscopic level. But then I’m no pathologist or dr.
Posted 8/9/2023 10:11 PM (GMT -5)
Could you switch to care by the doctor who did your FMT? From your update giving the sequence of events including C-diff recurrence, he sounds more knowledgeable than the one you've been consulting over time, plus his assessment of your UC status corresponds with the pathologist's report. As Straydog commented above, "something is not right". And he did describe your UC as "unmanaged" during a conversation you had with him. (Maybe that was a polite hint.) / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 8/10/2023 6:32 PM (GMT -5)
Mayo scores

1 mild disease with erythema, decreased vascular patterns and mild friability;

2, moderate disease with marked erythema, absence of vascular patterns, friability and erosions;

3, severe disease with spontaneous bleeding
Posted 8/10/2023 8:44 PM (GMT -5)
Midge, I'm sorry that you have to deal with such a hassle, but it's good that you brought it to our attention. The fact that today's gastros are maxed out shows that biologics increased the patient problems they have to address, rather than decreasing them. Good luck with pursuing the possible alternative connection. In addition to all the other stresses we patients have to deal with it seems that we have to learn diplomacy, besides, to get appropriate medical treatment! / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 8/10/2023 9:55 PM (GMT -5)
My friends used the excuses...the other doc was close to their work so it was easier to make appointment...the other friend used it was closer to her home.... I used...I felt more comfortable with a female doctor.... Sometimes you gotta be truthful but creative.

I'd be wanting to change too. Do you have a PCP that might try to refer you to this guy in like 6 months or so?

Clo
Posted 8/12/2023 10:44 AM (GMT -5)
I've also had a lengthy quest for a reliable PCP, dating back 6 years. After I spent 6 months on a waiting list then finally got office visit to an excellent internist, this doctor decided to relocate 5 months later: so frustrating! Last fall I got assigned to a postgraduate resident MD in 1st year of 3 yr program toward full certification. So I can definitely relate to your complication of needing to connect to a new PCP, when the existing PCPs are leaving in droves or declining new patients! *** Probably the best thing you can do for yourself at present is to avoid any known source of C-diff contamination. Did you ever get any medical or dietitian advice on probiotics use? In the 20teens I attended a lecture by an IBD MD/researcher who stated that the Lactobaccillus GG in [original formula] Culturelle could help to prevent C-diff infection. Also, it's important to supplement with probiotics if/when one has to take Rx antibiotics, which makes us more susceptible to C-diff infection. Several forum members have posted that daily Florastor probiotic helps them to avoid antibiotics complications. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
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