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Newly Diagnosed. Any input appreciated.

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Ulcerative Colitis
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Posted 2/3/2023 1:53 PM (GMT -8)
Hi everyone. I have the good fortune of being able to join your club. I was diagnosed last December with (probably) UC. So been doing what you all have already been through. Researching. Reading. Watching videos. Its overwhelming. Glad i found this forum. Looks like the best i've found so far.

So i started having trouble going to the bathroom late November. Would have to go a dozen times a day. No Blood. Just loose stool and mucus. Went to a GI. Blood work. Stool test. She set me up with a colonoscopy December 10.

POSTOPERATIVE DIAGNOSIS: Colitis extending from rectum to splenic flexure.
Appearance consistent with ulcerative colitis.
DIAGNOSIS
A) RIGHT COLON, BIOPSIES:
- COLONIC MUCOSA WITH NO SIGNIFICANT PATHOLOGIC FINDINGS.
- NO EVIDENCE OF MICROSCOPIC COLITIS.

B) LEFT COLON, BIOPSIES:
- COLONIC MUCOSA WITH NON-SPECIFIC SUPERFICIAL EROSION.
- NEGATIVE FOR ACTIVE INFLAMMATION, GRANULOMAS, AND MICROSCOPIC COLITIS.
- SEE COMMENT.
Comment B) Features of inflammatory bowel disease such as basal plasmacytosis, Paneth cell metaplasia, active inflammation and granulomas are not present in this biopsy material. No intraepithelial lymphocytosis or subepithelial collagen plate thickening are seen.

Doctor called me up and said he wasnt positive yet its UC. Put me on Balsalazide. I was on that 2 weeks without much improvement. He added prednisone 40mg weaning off. I'm on a week and a half and havnt seen much improvement. Only improvement is mucus has thinned out some. But still have most symptoms. Rectum still feels inflamed. Do you think maybe because of my size the prednisone is not working very well at this dosage? I've lifted weights all my life. I'm 6 foot 300lbs. Was 340 before i got sick.

Any input greatly appreciated. Thanks for taking time to read my post.
Posted 2/3/2023 5:16 PM (GMT -8)
What stool test did the GI order? Did they do a stool culture to check for infections? I'm assuming they did and that it was negative?

Have you had any blood with bowel movements (either fresh red blood or black "old" blood)?

This is a tricky one. Sounds a little like UC, but without bleeding (right?). Scope shows pattern consistent with UC. Biopsies show inflammation but not the types of inflammation commonly seen with UC. You're not responding well to prednisone (at least not yet).

Do you take any other medications? over the counter or Rx?

Could you ask the GI if they can get a 2nd pathologist to take a look at the biopsies, to see what somebody else says?
Posted 2/3/2023 5:19 PM (GMT -8)
Did your Dr. happen to share why they don't think it is UC or something like it?
Posted 2/3/2023 5:48 PM (GMT -8)
Hello Beave. Thanks for the response. Yeah they did

CALPROTECTIN, STOOL My Value 29.6 mcg/g
<50 mcg/g
27.1 - <50 mcg/g Normal
50 - 120 mcg/g Borderline
>120 mcg/g Abnormal

Borderline results suggest repeat testing in 4 to 6 weeks.

CELIAC My Value 395.2 mg/dL
61.0 - 356.0 mg/dL

CRP, INFLAMMATORY My Value 90.90 mg/L
<5.00 mg/L

And stool study was negative for infectious pathogens.

I'm only getting little red spots that are hard to see here and there. Can only really see it on the toilet paper some times. I was thinking i'm in the early stages of UC and the ulcers havnt opened yet? Seem like vast majority of UCers are already getting lots of blood when they are dignosed.

I take lisinopril (blood pressure). And finasteride.

2nd pathologist to take a look at the biopsies is a good idea. I'll bring it up.

Thanks alot for your time.
Posted 2/3/2023 6:01 PM (GMT -8)

WI chica said...
Did your Dr. happen to share why they don't think it is UC or something like it?

Hello WI chica. He didnt come out and say he didnt think its UC. He just said hes not for sure yet. No he didnt elaborate.
Posted 2/3/2023 9:54 PM (GMT -8)
What exactly was the celiac test? Your value there looks out of range.

Your fecal calprotectin looks within normal range.

Your CRP is high, indicating inflammation somewhere in your body - but that test can't tell you where it's coming from.
Posted 2/4/2023 5:24 AM (GMT -8)
The celiac test was TOTAL IMMUNOGLOBULIN A.
Came across this interesting study.
https://www.healio.com/news/gastroenterology/20190711/igg-iga-levels-help-differentiate-between-uc-crohns-disease

Thanks beave
Posted 2/4/2023 10:22 AM (GMT -8)
What were the path results for the sigmoid and rectum?

q
Posted 2/4/2023 11:07 AM (GMT -8)
Hi Quincy. I just see the 2 biopsies labeled left and right colon. Yes it would be nice to know those results.

Post Edited (UC2341) : 2/4/2023 12:01:46 PM (GMT-8)

Posted 2/4/2023 1:29 PM (GMT -8)
The blood test for TOTAL IMMUNOGLOBULIN A is very non-specific. High levels just indicate *something* is going on with the mucosal surfaces of the nose/throat or digestive tract. But it can't tell you *what* is going on.

There is a much more specific test for celiac, called anti tissue transglutaminase antibodies, that you should have done. A GI or primary care doc can order this.
Posted 2/5/2023 6:51 AM (GMT -8)
Thanks beave. I'll bring that up next week when I report how it's been going.
Posted 2/24/2023 1:26 PM (GMT -8)
How are you doing now? Those results are confusing to me. Usually there are also biopsies labeled sigmoid and rectum, like quincy noted. Blood was my very first UC symptom.

Does the celiac test mean you don't have celiac disease? It looks out of range from what you shared.
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