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My UC that my GI now calls Crohn’s disease.

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Ulcerative Colitis
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Posted 3/6/2020 7:55 PM (GMT 0)
Hi everybody. I just thought I’d come here and share the latest: 2 1/2 years ago I was diagnosed with ulcerative colitis, and the colonoscopy I had at the time was incomplete, So while there were significant ulcers and inflammation and bleeding in the descending colon, near the ileum was not viewed. After taking suppositories for two (or maybe it was 3) months and having a sigmoidoscopy, the inflammation in the sigmoid was clear (2 1/2 years ago).

July of last year I had another colonoscopy which showed severe inflammation in the caecum area an 20 cm of inflammation in the sigmoid. My doctor put me on steroids and Pentasa four times a day. I was so upset about being on prednisone that I adjusted my already pretty healthy diet, following the IBD AID about 80%. ( I actually didn’t hear until two days ago that my doctor considered my symptoms to indicate severe Crohn’s disease last July). We haven’t had a lot of opportunity to communicate with each other, but now I have her email address and another appointment in 6 months. In November my GI wanted me to go on Biologics and I was prepared this week to start a remicade biosimilar. My calprotectin levels were only 100 in October but my doctor thought that they were only on the low side because I just got off prednisone and that they would go up. I asked if we could just wait three months to see if the levels go down. In February they did go down to 64, I didn’t really know if that was a significant drop or not and I had an appointment with her 2 days ago and she said that this is significant so no biologics for me at this time smile. I don’t know if it’s the medication or the diet that’s helping me but I’m being extremely strict now for the next three months with my diet so that I can see if they go down further in June. I’m so relieved. I have not had bloating and pain since before august 2019, And I have not had diarrhoea since Christmas.
Posted 3/6/2020 8:16 PM (GMT 0)
That's great news! I thought it was a bit premature of her to suggest biologics when you weren't really having any symptoms.
Posted 3/7/2020 12:14 AM (GMT 0)
Yes! Thank yousmile
Posted 3/7/2020 1:33 PM (GMT 0)
Most doctors will suggest biologics with Crohns. Especially with a history of severe inflammation. Maybe you'll luck out and the diet will do it for you.
Posted 3/8/2020 1:23 AM (GMT 0)
Did you request a copy or the biopsy report? For those of us with pancolitis, it's common to get bad inflammation in the cecum due to the type of cells there. Did they see inflammation in the terminal ileum, especially in the biopsied cells?

Check out this link:

https://www.giejournal.org/article/s0016-5107(08)01639-8/abstract

"The important lesson: don't diagnose Crohn's disease just because you see a patch of cecal inflammation in a patient with distal colitis. "

I've learned to never assume that a GI doc really understands all the finer details of IBD. Many don't unless they specialize in it.
Posted 3/9/2020 11:12 PM (GMT 0)
Rosiedays,
I'm so happy you are doing well. Maybe the post before this has a point? Did you look at the biopsy? I looked mine up on the health link, so I knew about it before I saw the GI Dr.
Stay healthy...walk the dogs..lol
Posted 3/10/2020 1:06 PM (GMT 0)
CGK Thank yousmile

I did obtain a copy. Quoted: “In the Cecum and proximal ascending colon there were large areas of marked erythema, Friable mucosa with ulceration and some fresh blood. There were also some indentations in the proximal ascending colon from the ulceration; however, this information is non-continuous, as there was still some normal mucosa in the caecum and proximal ascending colon. The endoscopic Appearance is consistent with severe inflammation (Mayo 3). “

My doctor told me that the biopsy was inconclusive. I am intrigued by the article that you sent and I will be able to obtain a complete version of it and do some digging in the references. Thank you very much for your post. It sits well with me.

Post Edited (Rosiedays) : 3/10/2020 7:57:01 AM (GMT-6)

Posted 3/10/2020 10:01 PM (GMT 0)
The thing is, the oral and rectal meds (mesalamine) don't distribute in a consistent and even manner, so healing isn't always uniform, that is why biopsies are so important because they can better determine if the mucosa is completely healthy in some spots. I don't see any mention of the ileum. Did they go up that high?

Weird your doc would say the biopsies are inconclusive, yet say your Crohn's diagnosis is conclusive. One conclusive finding for Crohn's is patchy inflammation in the ileum.
Posted 3/11/2020 12:06 AM (GMT 0)
“Terminal ileum was untubated and appeared normal and was biopsied”

I wrote in my notes back in November that my dr said she suspected that the ileum was inflamed. It’s so good to read the report! She also said in November that she is certain that my inflammation levels would go up. Instead, I started having symptomatic remission in December and my calprotectin levels went down!

This makes me feel more relaxed about waiting three months for the next lab tests and waiting six months to see my doctor again smile because I might be treating UC correctly. It is also a reminder that my salafalk suppositories are as important now as they ever were!

Thank you for this conversation.

And sassy back, ha e a wonderful trip! And let’s get in touch again when you returnsmile
Posted 3/11/2020 3:26 AM (GMT 0)
The mesalamine oral or rectal doesn't heal in a patchy manner in UC because of the way UC heals.

CD probability...makes sense.

q
Posted 3/11/2020 7:25 AM (GMT 0)

Rosiedays said...
“Terminal ileum was untubated and appeared normal and was biopsied”

Doesn't sound like Crohn's, but could be indeterminate colitis that doesn't fit nicely into either Crohn's or U.C., or it may just be atypical U.C. Mesalamine is a topical anti-inflammatory, and it can't heal mucosa that it doesn't come in contact with, that's why in pancolitis healing can be somewhat uneven, but completely healthy patches mixed in with inflamed areas is not U.C. Keep in mind that different types of mesalamine tablets dissolve at different PHs, so if things move fast in your digestive system, the tablets may not consistently dissolve before they get to the cecum. That's most likely not a problem if you are taking pentasa which starts releasing in the stomach.

Is there anything in the biopsy report that says some biopsied tissue was completely normal?

In any case, it wouldn't hurt to get a second opinion if that is possible.
Posted 3/12/2020 5:01 AM (GMT 0)
I do appreciate the questions. They are making me dig deeper. I don’t think I have the biopsy report. I have the investigation results: “Preoperative diagnosis: ulcerative colitis. Postoperative diagnosis: inflammatory changes in the terminal ileum and cecum and mild inflammation at 20 cm.”

“Biopsies taken at 10, 20, 30, 40, 50, 60, 70 and 80 cm. At 80cm: In the caecum and in the proximal ascending colon there were large areas of marked erythema, friable mucosa with ulceration and some fresh blood. there was no active bleeding but the mucosa was very friable and bled easily with water irrigation. The endoscopic appearance is consistent with severe inflammation (mayo 3) “


I can see what looks like an inconsistency to me in this report: on the one hand it says there are inflammatory changes in the terminal ileum and cecum. (And I remember her saying this to me in person); And on the other hand there is this sentence, “Terminal ileum was intubated and appeared normal....”

I remember her saying that the inflammation presented like Crohn’s disease but the biopsy near the ileum was inconclusive.

I honestly still don’t understand, if they biopsied at 20cm and the results indicated IBD and (pretend) if I didn’t have inflammation anywhere else in the colon, Would That be diagnosed as a UC again? Or if I have Crohn’s disease and they biopsied at 20 cm, would the tissue show the same biopsy results as I had two years ago when I was diagnosed with UC, but now they would call it crohns because of the patches of healthy tissue inbetween? 🤔


Either way I think my treatment plan is sound at the moment. I’m not expecting perfect answers but I’m glad I’m examining this closely, learning more, and planning to stay on the course of checking my Calprotectin levels every three months, and hopefully continuing to watch them go down.. I have a visit with my doctor in six months, and I will bring this up again then. I can also email her in between now and then if I want.
Posted 3/12/2020 7:24 AM (GMT 0)
There are NO histological features (things they can see on the biopsies) that can distinguish UC from Crohn's. There are SOMETIMES histological features that definitively distinguish Crohn's from UC (granulomas). But for most people, biopsies cannot tell whether you have Crohn's or UC - this is a subjective analysis based on clinical presentation. Because of this, it is not uncommon for Crohn's to be misdiagnosed as UC (it happens in 10% of cases).
Posted 3/12/2020 12:04 PM (GMT 0)
I'd be curious to hear the biopsy results. What's Crohn's like based on what you describe? Maybe/inconclusive terminal ileum involvement. Patchiness. Not a solid Crohn's case by any means. Ileum involvement isn't impossible with UC pancolitis as backwash into the ileum. Patchiness can happen with uneven distribution of our meds.
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