Diagnosis Journey: How Did You First Learn You Had Ulcerative Colitis?

Hi everyone,
I’m curious to hear about your Ulcerative Colitis diagnosis journey. Getting diagnosed can be a confusing and emotional time, and it seems like everyone’s path to diagnosis is a little different.

How did you first learn that you had Ulcerative Colitis? Was it a gradual process of trying to figure out what was wrong, or did you receive a diagnosis quickly?
What were your initial symptoms? Did they match what you thought they might be, or were they different than what you expected?

Feel free to share your experiences. It can be helpful to hear from others who’ve gone through a similar journey, especially for those of us who are newly diagnosed or still searching for answers.

Looking forward to hearing your stories!
Thank You,
-HealingWell Admin Team

Right before the Christmas holidays I thought I had an intestinal bug, but then it lasted for almost 2 weeks so I saw my doc who gave some meds. By New Years Eve I was very sick (severe bloody diarrhea, very weak) and was hospitalized for a week. Scope and diagnosis while in the hospital. I was 53 years old at the time and never had any signs before, though earlier that year I did get an intestinal bug twice that kept making the rounds through my workplace. I had no idea what ulcerative colitis was and all the docs said was that there was medicine to treat it and I would need to do so for life.

Much of what I have learned about UC has come from reading this site. It's not very active now, but several years ago there were a lot more posts. To anyone who is new and is reading this, this site has an amazing archive of information. You can use the search box to find out just about anything about this disease. And always feel free to join the group and ask your own questions.

My story is close to CC. But previously I’d had issues for many years with severe diverticulitis episodes which led to having 8 inches of colon removed and reattached. So I already had a GI for those issues but after surgery I was good for about 18 months with no issues. So when symptoms first started I thought it was diverticulitis again, as symptoms can be similar.

Then one morning I had blood in my stool, which had never happened with my diverticulitis. Several trips to ER because of that plus I was very weak — one visit they found I was severely low blood sugar of 30. Then one visit they found my pancreatic enzymes were so out of whack the hospital admitted me with pancreatitis— which I knew it wasn’t as the symptoms did not match. The UC was just throwing my whole system into chaos (although I did not know at the time it was UC). I eventually had to check myself out of that hospital and go to another city where my GI practiced (40 minutes away) and finally got my diagnosis after a sigmoidoscopy I was 64.

They put me on Apriso which didn’t have much effect. A year of on and off prednisone and total misery and practically being housebound finally led to starting me on entyvio infusions (the “new” drug at the time). And that finally got me to remission after about 4 months.

Also, like CC, I found most of my info about UC here when I finally found this forum. No doctor even mentioned mesalamine enemas to me, for instance. They gave me canasa suppositories but never brought up enemas, which I wish they had. I learned about them here. As well as all the med options.

It all started when I was in my mid thirties with bright blood in toilet. Barium and sigmoidoscopy
Only revealed hemorrhoids. Constipation was on-going. Eventually it got so bad, only mucus and blood started. By the time I saw a GI it was at least 2 years later, who diagnosed UC. I was put in a trial for Asacol that was a new drug and rectal cortifoam. Then I reached remission quickly.

Looking back, I had several of the characteristics associated with UC. Arthritic knees, hips, acne, etc. I lasted several years without any bad flares. I never had flares with Diarrhea until the last two years. All flares started with constipation.

After getting food poisoning a couple years ago, I have been flaring with Diarrhea and constipation and was switched from Asacol to Mezavant..full dose. Also been on Entyvio for 9 months. Doc says it isn't working good enough. I have lots of cramping before any bms of which I never used to.

Now I wait until next scope in a month to see the extent of this flare. Except the first bad flare, I had mild - moderate inflammation 30 -40 cm from the bottom. I have been very lucky so far. But I still hate those preps!

For the two years before I was diagnosed, I kept getting "food poisoning" -- diarrhea, upset stomach, pain in my lower belly. I noticed blood and mucus occasionally. By the time I was formally diagnosed, I was seeing blood and mucus in my stool almost every day.

I had diarrhea that lasted for a few weeks, and my doc put me on Lomotil, which helped. I lost 17 pounds and went down to 109, which wasnt nice on a 5'8" frame. She did no stool sample testing, and I went in with my life. Over the next 2 years, I was up and down between diarrhea and constipation and kept an input/output diary for 2 years. I could see no connection, but did change some eating changes regarding fibre sources, eliminating some and making sure cooking soft was with all veggies and nothing raw. I did gain some weight back which was good.

One day, I had excrutiating discomfort, and that's when the bloody diarrhea started. My doc sent me for the most degrading barium enema test first. It showed no inflammation, and she concluded hemmies...and told me how lucky (hate that word) I was I didn't have Ulcerative Colitis, because those people suffer horribly. Thankfully, she sent me to a GI, and he took a look-see first appointment and was sure it was UC. It went beyond the rectoscope and set me up for a c-scope within the month. I did stool testing and was also put on Asacol.

At the scope, my inflammation was friable up to the 15 inch mark. It was then I was rx'd the salofalk enemas, and biopsies pathology came back consistent with UC. He was an awesome GI, extremely supportive, and I had him for 25 years. I now have an equally awesome doc...hopefully for the rest of my life!

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