Newly Diagnosed. Any input appreciated.

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?

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.

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.

What were the path results for the sigmoid and rectum?

q

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.

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.

Hi Sara, Clo, everyone. Clo i think you read my report wrong it says "features are not present in biopsy material". So i cant help you with that. Sorry.

I stopped updating here because you guys were right to say my readings are confusing. Turns out its not UC.

So long story short. I have some sort of blood flow issue which is going to result in me having a colectomy and my rectum removed. Basicly everything thats connected to the inferior mesenteric artery is dying. All the way down to my rectum. Which i just found out tuesday will have to out also. Which has been really tough news.

They dont know why this happening. Especally since the rectum has 2 blood supplies. They thought maybe it was vasculitis. But tests came back negative.
This is from my CT angiogram 2 weeks ago.

"An inferior mesenteric vein is not identifiable on the current
examination. IMV is not definable on the prior 12/22/2022 examination.
The distribution of the colitis is unchanged from the December study
with abrupt transition from normal to abnormal at the proximal to mid
descending colon. The severity of the colonic thickening appears to
have worsened. A definite thrombosed venous structure is not
identified. The persistence of the findings with the same distribution
and the marked vasodilatation of arterial structures within the
corresponding mesentery and the visualized inferior mesenteric vein
are suspicious for venous occlusion or stasis producing the regional
colitis."

So they say whatever is going on is very rare. I'll probably get the surgery in 2 weeks if not sooner. Since my colon and rectum is about shut and only miralax is keeping it going right now. So i'm kinda alone since no one seems to know whats going on. And i cant find anything online similar.

You guys are great and among you there is alot of knowledge i can tell. So i'll be asking advice about recovering from the surgery. Especially the rectum removal is very scary.

But i'm going to do what i have to do to be there for my wife and kids a much as i can.

Just FYI — we have a friend who had cancer in his 50’s and had his rectum removed. Not sure how much of his colon was removed along with it. He’s in his early 80’s now and going strong. Having a “Barbie butt” and a bag (sorry — I’m sure there’s a better term for it) doesn’t keep him from doing anything. He even went on a hunting trip a couple of years ago where he was camping out for a week and riding a horse for 8 hrs a day.

Sorry for your diagnosis! It’s tough to wrap your head around I’m sure. I remember our friend saying when he woke up from surgery that he didn’t want to live like that. But he’s happily living his life now.

FlowersGal said...
Just FYI — we have a friend who had cancer in his 50’s and had his rectum removed. Not sure how much of his colon was removed along with it. He’s in his early 80’s now and going strong. Having a “Barbie butt” and a bag (sorry — I’m sure there’s a better term for it) doesn’t keep him from doing anything. He even went on a hunting trip a couple of years ago where he was camping out for a week and riding a horse for 8 hrs a day.

Sorry for your diagnosis! It’s tough to wrap your head around I’m sure. I remember our friend saying when he woke up from surgery that he didn’t want to live like that. But he’s happily living his life now.

Hello FG. Thanks alot. Your kind words of ecouragement have a very big effect. I really appreciate it since i'm pretty down today. Dreading all to come. Thanks alot really appreciate it.