Is My UC Mild?

Hi Everyone,
One day out of the blue, two years, I got severe bloody diarrhea for a couple days and then it went away. A gastro dr did a colonoscopy and told me that I had UC. It just came out of no where and have no family history on ither side. I told him that I thought it was being caused by something rather than actually being UC. He sent me for a prometheus test which came back as showing no markers for IBD. I also had a ct scan done about two months later for groin pain. The ct scan only showed mild diverticulosis, not even full blown diverticulitis and no signs of UC. My gastro dr continues to say that I have UC and that I need to take my mesalamine everyday or I will get rectal cancer. ( I keep stopping it)
Okay, I usually only make two or three bm's everyday sometime before noon and then I'm good for the day. I never have diarrhea unless I eat something bad (bacteria from a salad). My stools are formed and stay together in toilet, but they slide out of me way too easily. I don't have constant cramping.
Here's the strange part or maybe not I don't know. I can go all day with no problems, then out of the blue my rectum and lower abdomin will start to buzz/vibrate for an hour or two and then just stop. When this happens I know that my next bm whether a couple hours later or the next morning will be covered in blood. The next bm will be blood free, I only bleed after one of these buzzing episodes.
I was on prednisone once when I was first diagnosed, but never completed the full cycle because I was complaining about the side effects and Dr wasn't positive that I had uc since the prometheus and ct scan weren't showing it so he had taper off very quickly. I'm suppose to me taking four tablets 1.2 g of mesalamine a day, but I keep stopping it because I can't tell if it's helping or actually causing the bleeding. The three most common side effects of mesalamine are cramping, diarrhea and bloody stools. How is anyone to know if it's working? I can't take it at all during the summer months because I work outside in the sun. (It makes me extremely sensitive to the sun). My gastro dr just says to keep taking it or get colon cancer.
I recently went to see a different gastro dr. She told that if I'm not having diarrhea then I don't have active UC, only colitis. I told her about the sun sensitivity when taking mesalamine. She told me to either find a new inside job or switch over to a immunosuppressant and suggested entyio.
Entyio is a nasty medication, it's like playing the death lottery the longer your on it, eventually the complications it causes is what kills you (especially as you get older) not the UC.
First, do my symptoms match UC and is mine considered mild?
Second, do I really need to jump from mesalamine all the way up to an immunosuppressant (seems really drastic)?

Sorry for the length of the post, just trying to provide as many details as possible.
Thanks guys,
JML

It sounds to me like you need better info from the physicians you've consulted to-date, either that or connect with a gastroenterologist/IBD center where your symptoms would be analyzed by more experienced staff. For a doctor to tell you that you have to keep taking mesalamine continuously to prevent development of colon cancer is grossly simplistic! Have you gotten any biopsy reports from past colonoscopy? Have your blood tests included CRP (c-reactive protein) and/or ESR (sedimentation rate of blood) -- which are 2 standard measurements of inflammatory activity used longtime to diagnose/monitor UC? Some people who develop UC have no family history of gastroenterological problems, also some patients correctly diagnosed with UC and prescribed mesalamine to treat it turn out to be intolerant to that med for various reasons. It's basically a high-power salicylate, so somewhat related to aspirin. So you wouldn't be considered unusual for your symptoms by a gastroenterologist who has solid experience treating UC patients and keeps current on meds available to best treat it at whatever stage your scoping and lab tests show your inflammation to actually be in. You seem to have some urgency with the bleeding, typical of UC, and that combination of symptoms would indicate rectal inflammation, aka ulcerative proctitis = inflamed rectum. If you have additional symptoms like fever, nausea, and/or joint pain, you could have inflammation above the rectum-- so your doctor should definitely inform you what shows up where following a scope with biopsy and any polyp findings. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

Another thought occurred to me just now-- since you mentioned a CTscan turning up "mild diverticulosis". Last year a female member on this forum posted about having SCAD, which is an inflammation in the colon taking place BETWEEN diverticula. I don't recall her moniker to recommend that you look up her posts, but do remember that she said her treatment requires UC meds. That's another good reason to look up your past scope reports and consider pursuing additional gastroenterologist consultations elsewhere, as Bacon Girl also suggests. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

JustMyLuck said...
Hi Everyone,
Entyio is a nasty medication, it's like playing the death lottery the longer your on it, eventually the complications it causes is what kills you (especially as you get older) not the UC.

Thanks guys,
JML

Just as a data point — entyvio is considered as having the least side effects of the biologics. It is not a “death lottery”. Any medication will list all sorts of horrible possible complications. But when you look at the actual statistics it’s never quite as bad as they list. People have died from untreated UC too.

Anyway just wanted to state I’ve been on entyvio for 7 years now, happily in remission, and absolutely no side effects!

Getting a solid diagnosis is not an easy task. Hopefully you’ll get some answers. Without a progression of disease!

I agree, get a doctor who is informed about UC, and probably you need a new colonoscopy as things might have changed since your last one two years ago.

I am not sure a CT scan is diagnostic for UC (I've never had one in 9 years of UC, had plenty of colonoscopies).

My blood markers have always been normal even when i had pancolitis and severe inflammation.

Entyvio is not a nasty medication and I've seen zero data that it kills people who are on it long term. Untreated inflammation can however kill you in the long term (sorry to be dramatic but that was the reality for most UC sufferers c. 100 years ago before medications and surgery were available).

Whether or not you need entyvio depends on whether your inflammation is well-controlled by mesalazines.

Having lived with the consequences of severe inflammation for several years and had pretty much zero quality of life in that period I am grateful for the medications that gave me my life back, even if i hate the risks and would prefer not to take them

Great they're being sent out. It will break down each area of where biopsies were taken . Next will be a microscopic description of each area...meaning what is seen during investigation of each biopsy. Lastly, a conclusion summary.

q

You'll probably need to type them out. That's what others have done when sharing results.

I think most of us get electronic results and just copy and paste the results. I have no idea how to post a photo. It looks to me like you would have to have it saved online somewhere else and link it, but dunno.

Exercise your typing skills

straydog said...
Photos will not help any of us on here. Look for written reports.

Yes, I know that, you must not have read my post on 4-24-2024 5:56 am.

You can’t post images on here but if you just type out the written portion of the scope, that will help. Typically it is in the “findings” section or “notes” section on the paper. It will say what each section of the colon looks like. We can’t actually “see” anything from photos since lots of diseases can make the colon look bad (infectious colitis, c diff, diverticulitis, colon cancer, other bacteria). Hope that clarifies things!

OK, I can see those biopsy results. Can you also post the scope results (don't need to see the pictures, just the text describing what was seen, but you can post the pictures too if you want)?

Try this:

https://www.dropbox.com/scl/fo/1h52buq3op4b7l47h1h1u/AMkMcQB0kYuYujOedPTLhm0?rlkey=hj58v5q7sbgfqzgii9zahnmh8&st=3gern57e&dl=0rl

The live link works...thanks CC.

Interesting re active ileitis and granulation...however, the biopsies aren't really enough or specific enough or as many as expected ro state exactly the cecum and ascending colon (which doesn't state active disease)

Good on the upper scope re no cellular changes.

Thanks for posting your results...you definitely need to see a new GI and have a scope(s) considering you have symptoms. I'm wondering if Microscopic Colitis is a possibility with you.

q