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Possible Misdiagnosis

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Ulcerative Colitis
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Posted 9/20/2021 3:54 AM (GMT 0)
@flowersgal thank you for your reply. Yes the words that I quoted were from the pathology report not the doctors report. It never indicated ulcerative Clyde us… they said either “infectious or inflammatory”, or chronic active colitis.one said chronic active colitis with epithelial ulcer
Posted 9/20/2021 4:28 AM (GMT 0)
What did the Prometheus blood panel say regarding Crohn's or IBD in general?
Posted 9/20/2021 6:56 AM (GMT 0)
Lol I love your voice to text

Anyway, yes my pathology reports have said "consistent with ulcerative colitis". They can never make a 100% certain diagnosis because there is always a chance it could be crohns disease.
Posted 9/20/2021 9:59 AM (GMT 0)
A couple questions:

You said "I’m also told he was CDIff colonized… But not infected." Did they explain what that means? I thought if you have cdiff you have cdiff and antibiotics are what is used to treat that. Sometimes it can take several rounds of antibiotics to completely get rid of the cdiff.

You said: "They also did not want to entertain a decision as to why the long 8 to 10 inch thing came out of them… As well as small white curvy and opaque triangular things when he was on a full liquid diet only." I am assuming that was more voice to text errors. Could you explain what you really meant?

You said "Since then he has developed multiple cysts on both kidneys. He had one cyst for a few years. He then developed a polyp on his gallbladder as well. Coincidentally, had a horrible belt with pain after eating that was very much like a gallbladder attack. Started in the center upper abdomen radiating to the back between the shoulder blades and then finally under the right rib cage. within 10 minutes after eating." These don't sound like UC symptoms. What did the docs say about that?
Posted 9/20/2021 1:52 PM (GMT 0)
@CCinPA Doctors, honestly do not want or seem to want to hear anything about these odd symptoms. The bottom line is his colon is inflamed, he’s bleeding and they’ve seen ulcers. My thing is one could have ulcerative colitis which I believe means the ulcers happen and then the colon in flames, but what about if the colon in flames and then causes ulcers?? Just seems like common sense to me. All they say is “well that’s the diagnosis it’s on the paper“ and they get frustrated with any questions about these odd symptoms. I’m looking for a functional medicine doctor that specializes in gastroenterology who will hopefully look at the bigger picture and be able to at least answer my questions as to why only vancomycin seems to help him improve and what these other anomalies are all about and if they’re tied together with everything.
Posted 9/20/2021 2:09 PM (GMT 0)
@CCinPA I forgot to address your other question. As far as the C diff colonization… I’m told that he must’ve had a previous infection? Not sure when that was because each time they tested him he was negative until he tested colonized. He did go between January and June without being tested, end it was the test in June showed him as colonized. The doctors say the colonization is not an active infection. That still doesn’t explain why vancomycin makes him better.
Posted 9/20/2021 2:10 PM (GMT 0)
@poopydoop commenting on your comment about the pathology reports for the colonoscopy. They did an upper endoscopy along with multiple colonoscopies… And each doctor we’ve seen has insisted it is not Crohn’s. But again none of the pathology report specifically say ulcerative colitis… Only chronic active colitis.
Posted 9/20/2021 2:13 PM (GMT 0)
@beave with regards to your comment and question about the Prometheus IBD panel. There are three sections to it - one says not definitive for Crohn’s or ulcerative colitis, meaning it does not know which one it is but it’s IBD. The next section is defining whether it is Crohn’s or ulcerative colitis. Third choice is a box a check that says the panel results are not consistent with IBD at all. So none of the genetic markers, serology nor inflammation markers tie it to IBD.
Posted 9/20/2021 2:42 PM (GMT 0)
@missujen, the ulcers in ulcerative colitis happen when the inflammation reaches a certain point. When I was diagnosed, i had no ulcers. Only developed those later...the diagnosis was made based on location of inflammation and pathology of the biopsies

For finding a good doctor, I would suggest starting a new thread with the request in the title, as not everyone who can help will read this thread
Posted 9/20/2021 3:19 PM (GMT 0)
You mentioned the Mayo Clinic in Scottsdale, this is where top IBD specialists can be found. poopydoop is not in the US, so she may not be aware of the Mayo Clinics. If I were in your son's situation this is where I would go.
Posted 9/20/2021 5:59 PM (GMT 0)
Thanks Susie, I'm aware they exist but have no idea how many there are or where they are located. In europe the top specialists are found in research-based hospitals which are generally affiliated with a university.
Posted 9/20/2021 11:36 PM (GMT 0)
Any family history of IBD, rheumatoid arthritis, lupus, psoriasis, etc?
Posted 9/21/2021 12:48 AM (GMT 0)
@beave family history: yes for psoriasis but not lupus or RA. His dad has Type 1 diabetes also - dx when he was younger.
Posted 9/21/2021 12:58 AM (GMT 0)
@beave family history: yes for psoriasis but not lupus or RA. His dad has Type 1 diabetes also - dx when he was younger.
Posted 9/21/2021 2:19 AM (GMT 0)
Has an infectious disease doc been consulted? What stool tests have been done for pathogens besides the standard panels? In other words, have they tested for other offenders besides the common ones like e.coli?
Posted 9/22/2021 1:53 PM (GMT 0)
@beave No. GI says no infection will last 7 months.

Yes they ran a stool pathogen panel.

He’s in the hospital and ready to start remicaid and if that doesn’t work it’s surgery.

Post Edited (missujen) : 9/22/2021 7:56:51 AM (GMT-6)

Posted 9/22/2021 4:32 PM (GMT 0)
I hope the remicade works!
Posted 9/22/2021 4:49 PM (GMT 0)
What about xeljanz? Or stelara? Remicade works by the same mechanism as humira so if humira didn't help at all I'm not sure the odds are good for remicade....

I've seen people on here who were hospitalised and then able to go home within a week after being put on xeljanz
Posted 9/22/2021 6:51 PM (GMT 0)
If I could do it all over again I wish that I got surgery when I was hospitalized for the first time (21 days). I probably would have been out of the hospital sooner but would have needed to go back for a the follow up surgeries.

I was so sick at the time they gave me Cyclosporine which allowed me to start on 6-mp and that took about 4 months to kick in. It worked well for me for years. My GI refers to Cyclosporine as the nuclear bomb of UC treatments. It is a very aggressive treatment and needs to be done in the hospital by doctors who are familiar using it.

10 years later I was went for surgery. I am much happier and my quality of life is better since surgery.

I know that surgery is a scary term but it could be a good thing for him.
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