Looking for support

This is my story, last year I was feeling tired and overall crappy when I would over exert myself (cleaning, mowing the yard, lifting boxes at work, etc.) I happened to notice one day, while checking my blood pressure at Wal-Mart, that my pulse was 111. It concerned me so I checked it as often as I could and paired it with the crappy feelings I had been having and went to the ER and they did blood tests and my hemoglobin was a 7. I’m a male, btw. They referred me to a GI doctor and he set me up with a colonoscopy and endoscopy and I had a few ulcers and lots of mucus.

After testing, I was diagnosed with UC. He put me on Sulfasalazine, iron supplements and Protonix. Less than a month later I had a bad flare up and was back in the hospital because blood was basically pouring out of me, my hemoglobin was at a 13 and dropped to 12. I bounced back and started watching what I eat. Milk and ice cream seem to be the big no no’s. I used to have multiple bathroom sessions a day but now I have one or two a day. I’ve been having this weird stomach pain that seems unpredictable, thought it was what I was eating but I can’t relate it. Feels like someone is holding my intestines for 30 minutes to an hour. On and off and sometimes I can go a few weeks without it happening. My GI doctor took me off my iron supplements thinking it might be related and since my iron levels are ok now, it wasn’t needed.

I think the only thing that concerns me now is my heart rate. Some days I can have a 80bpm resting rate or days like today where it stays around 100 to 115 while resting and 120 to 130 just moving around. I can’t seem to find support within my home and decided to turn to the internet to find related people with the same problems as me and to find reassurance and to ease my worries at times.

Yeah, I have had stomach problems for a long time but never got it checked out. Really just learned to maintain it. So, I really didn’t have a no symptom diagnosis, I just adapted and didn’t think it was abnormal until about 5 months ago. I think my main objective in that post was to ask if it’s normal to go some days with a normal heartrate and then have a day where it’s elevated. Not sure if that means I’m having a flare up. I’m still new and trying to find out what it’s like and not like to not have an issue with UC, especially since for so long I didn’t really pay attention to what “normal” feels like.

When your hemoglobin was at 7, were you having obvious blood in your stool?

When you had the colonoscopy, where were the ulcers found - what location in your colon? Do you know if they took biopsies and if so, what they showed?

Have you had recent bloodwork, not only to check for anemia but also for iron levels, b-12 levels, folate levels, and all the standard counts?

It's true that it's somewhat normal for your heart rate, even at rest, to be elevated when you're sick, either from a short-term illness like the flu or from a long-term illness like UC. But with UC, it often indicates a flare up of disease activity and/or the disease is not sufficiently well-controlled with the current medications.

It's probably time for blood tests, possibly stool tests, and maybe even a scope - a sigmoidoscopy might be enough.

Hmmm...I was kinda thinking to myself before that this sounds more like Crohn's than UC...and now I'm thinking that even moreso. Dark blood indicates it's coming from higher up in the digestive tract.

UC usually has diarrhea and bright red blood if there is any (usually, not always). Crohn's may or may not have diarrhea, or it may come and go, and if there is blood it may be bright red and fresh or dark and old.

What was the cause of the ulcers in your stomach? That doesn't happen for no reason. And it doesn't happen with UC.

Do you take any other medications, even over the counter meds? Do you take anything like ibuprofen or aspirin regularly?

Is the GI you've seen a specialist in treating UC and Crohn's? Some (many?) GI's aren't very well educated in distinguishing the two diseases and treating them.

What antibodies test was done recently?

I think you need further testing and/or a second opinion from an IBD specialist. I can't help but wonder if it's Crohn's and not UC. I wouldn't just brush this off as 'normal' for UC and do nothing about it if I wer e you.

Where are you located?

Post Edited (beave) : 4/12/2018 11:41:20 PM (GMT-6)

Do you have a copy of the biopsies pathology report?

Welcome to the forum.
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I suggest you ask for copies of biopsies results since there are questions about it, and you can use the info to share here for info and for research.

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That's great you called....keep us updated.

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