I have a few questions about IBD/Ulcerative Colitis (UC) since it's currently the most likely diagnosis.
I've had GERD for as long as I can remember. It's annoying but manageable. I also have SIBO and gastritis, so I've dealt with quite a few GI issues over the years.
Some background:
- I've always had extreme fatigue. I used to fall asleep during class and had a really hard time waking up.
- I have daily abdominal cramps/discomfort, but they're usually mild rather than severe.
- When I was younger, I intentionally bulked from 58 kg to 78 kg over about a year. After an unrelated surgery, my appetite dropped significantly, and I lost weight.
- I'm now back to around 57 kg, mostly because of anxiety around eating, my severe emetophobia (fear of vomiting), and fear of GI symptoms.
My bowel symptoms
When I was still going to school, I had very unpredictable urgency, especially while riding the bus or just after getting off. It was almost always diarrhea, often with some mucus.
At that time, I was basically living on:
- Lopedium (loperamide) to control diarrhea
- Normaflore
With those, my symptoms became fairly manageable. More annoying than debilitating.
Endoscopy
My gastroenterologist recommended an upper endoscopy.
The results:
- Diagnosed with gastritis
- Evidence of esophageal damage from acid reflux
- Biopsies came back normal
I was prescribed Nolpaza for 3 months, which definitely helped my GERD.
Around this time, my fecal calprotectin was below 50, so there wasn't much concern about IBD then.
What happened recently
A few weeks ago, things suddenly changed.
I had about 5–10 minutes of pretty intense cramps, followed by an urgent episode of diarrhea.
This surprised me because I hadn't had diarrhea for around 2–3 months.
Then I had to go again.
This time there was fresh bright red blood.
The third trip was mostly water mixed with blood, and the fourth time it was just a small drop of blood.
We went to the ER.
While I was there, I went to the bathroom twice more. The first time, something that looked like a small fibrous piece with dried blood came out. After that, I didn't see any more blood.
I was discharged from the ER.
Fever & dehydration
After getting home, I developed a fever that peaked at 38.4°C.
Thankfully, it resolved overnight, and by the next afternoon I no longer had a fever.
A day later, while lying in bed, I developed chest pain. I'm a very anxious person, and my emetophobia was making me extremely nauseous as well, so we called an ambulance.
It turned out I was dehydrated.
They gave me IV fluids, monitored me, and I was discharged after a couple of days.
Calprotectin
During this whole episode, another fecal calprotectin test was done.
It came back at 2670.
What surprised me is that only 5–6 months earlier, it had been below 50.
The doctors ruled out the common infections they tested for, although they mentioned it could have been caused by a virus.
Colonoscopy
I now have a colonoscopy scheduled.
I'm honestly much more scared of the bowel prep than the procedure itself because I have severe emetophobia. If anyone here also has emetophobia or was terrified of the prep, I'd really appreciate hearing how it went for you.
My questions
I'm curious what symptoms people with IBD or Ulcerative Colitis experienced, especially before they were diagnosed.
- Did your symptoms come and go, or were they constant?
- Did anyone else have years of relatively mild symptoms before things suddenly got worse?
- Has anyone had calprotectin go from normal to extremely high in a short period of time?
- How was the colonoscopy prep, especially if you're someone who gets nauseous easily or has emetophobia?
- Any general advice, tips, or things you wish you'd known before getting diagnosed?
For some additional context:
- I've only had blood in my stool twice in my life, and neither episode involved a large amount of blood.
- I've never had black or tarry stools.
I'd really appreciate hearing other people's experiences. I know nobody here can diagnose me, but reading about other people's journeys would help ease my anxiety while I wait for the colonoscopy.
Thanks for reading.
Also i apologize for alot of yapping, my paragraph has been enhanced/rewritten by AI since my english is not so sharp at all lmao. So for the conclusion, Im not yet diagnosed with IBD or UC, im just sharing my GI experiences.