Posted 3/20/2018 11:54 AM (GMT -6)
Earlier this month I was diagnosed with collagenous colitis. I’m 32.
Some background on my stomach issues.. First of all my mom has Crohn’s and colitis. Four years ago I contracted the h phlori stomach infection and my stomach was never really the same since. I had a breath test and endoscopy following antibiotic treatment, confirming it was eradicated. But I was sick for about a year with terrible heartburn and pain on my right side. I even had a colonoscopy that year but it was normal. I tried different PPIs, ended up staying on dexilant for about six months. I started to feel better. Over the next few years I’d have some minor heartburn flare ups, kept getting re tested for H pylori thinking it came back but the tests were always negative. I used carafate which helped. I didn’t really continue using PPIs.
In January I started noticing more urgency in the morning after breakfast. Diarrhea was never a problem for me. I started wondering if I was lactose intolerant and the cream in my coffee after breakfast was triggering. Then I had an episode at the gym, where the diarrhea was violent and I honestly didn’t even make it to the bathroom. This came out of nowhere. Again I started thinking maybe I’m lactose intolerant, so. Reduced that and caffeine which I thought was helping. I was always having lower abdominal cramping. I had a blood test which showed negative for celiac but high CPR levels, indicating infection and inflammation was in my body. I also had normal stool tests for parasites. I had a colonoscopy which was normal and the dr thought this would just go away but the biopsies revealed collagenous colitis. He was surprised because he says it’s more common in elderly people. He told me it is not as serious as Crohn’s or ulcerative colitis, it’s more like IBS. He is a good dr, I don’t think he was downplaying my condition, just reassuring me. His treatment plan was: 8 pepto bismol tablets a day, or Asacol or Budesonide. Also diet helps people , he mentioned fructose gives people a lot of trouble. At that time I wasn’t having diarrhea so I didn’t take anything.
A few days later, I ended up in the ER which excruciating pelvic pain after starting my period. Pelvic and hip. Ultrasound was normal. They originally thought I had a cyst. I don’t normally have period problems. I told them to check Inflammation in my bowel but the CT scan was normal. So the dr thought I may have injured myself working out, which is a possibility. They gave me morphine and Percocet but those didn’t help at all.
2 days later my colitis flared up. I don’t know if it was something I ate, to be honest I can’t link my diarrhea to food any more. Or maybe the medicine triggered something. Or stress. My symptoms may be more mild than some.. I go to the bathroom 1-3 times in the morning. The volume isn’t that much. It’s mostly watery diarrhea or loose stools. I recently started taking the 8 pepto bismol a day. I also started Metamucil which I think may be helping to start bulking the stool. I have a GI appointment in April. I want to discuss Asacol with him.
Does anyone else have experience with this form of colitis? I have researched it a lot and read other message words. I know a lot of people control it with diet. I am a petite person, 4’11 and around 95 lbs. I already eat healthy. I do eat a lot of fiber so I am trying to cut down.