Visit the Microscopic Colitis Foundation Website
I'll tell my little story, and then I have a few questions for everyone here!!
I have had microscopic colitis symptoms for as long as I could remember, though I was not diagnosed until I was 17 years old and had a endoscopy/colonoscopy with biopsies. My mom has often told me I was a "colicky" baby and always had explosive diapers. I have maybe one or two memories of having actually formed, "normal" stools when I was very young. I'd say my symptoms became worse around puberty; when I had my menstrual cycle I would have severe cramps and burning black diarrhea. Otherwise my baseline at that point was just explosive watery brown stools. As I got older, nausea, gas, abdominal pain, fatigue all became much more common. When I was in middle school they did glucose, fructose, lactose, celiac tests etc. All negative. Stool samples negative. The next step would be colonoscopy which I was way too freaked out to do. I finally followed up with a GI my senior year of high school after having a horrible day of vomiting and diarrhea nonstop and going to the ER, then had the endoscopy/colonoscopy which the doctor said showed MC and offered to prescribe me budesonide. I was super freaked out about using steroids at the time so I never took the samples he gave me. They were also extremely expensive and would have cost my parents $400 a month I believe (so my mom was pissed I never took the samples and let them expire lol). I decided since I had lived with my symptoms for most of life, wasn't having any nutrient deficits from it (as far as I knew), and had only a few bad days a month, I'd just continue to live with it and not take medications. I also thought, if this is something I've had my entire life- why would one short term course of medication be the magic fix? I was scared (and still am) that if I started steroids that I'd maybe get better but then would go back to my "default" after tapering off them.
So now I'm here, senior year in college and my symptoms have gotten even worse. I spend a lot of time on the toilet these days. I went back to another GI in April and had another colonoscopy with the same diagnosis and proposed treatment- though he also gave me some samples anti-inflammatories to try first before corticosteroids (I have yet to do this but plan to soon), however he said he was almost certain these would not help at all. I also learned this time I have "lymphocytic" colitis. This week I noticed blood in my stool for the first time and went to a clinic who said I had hemorrhoids!! I've never had these before and am in a lot of pain in my rectum. I have had on and off similar rectal pain since my colonoscopy in April. I have also had severe, stabbing right lower quadrant pain before & during bowel movements several times a month since the colonoscopy. I had similar pains before it, but not nearly as bad. I had asked my GI about this, but he said this is normal for MC.
My questions for anyone & everyone:
1. Has anyone else had MC since they were born/very young with no clue if there is a specific event which may have caused it? Has anyone been able to go into a long remission after having it their whole life, if so, what helped that to happen?
2. Any tips for hemorrhoids? I have some suppositories I am going to pick up from the pharmacy tomorrow.
3. What are symptoms of malabsorption/nutrition? How is this diagnosed typically? I am pretty sure I don't have this issue but I am curious. My vitamin D level was like 13 in January of this year and my Dr. made me take 50,000 units once a week for 8 weeks.
4. What do you do about brain fog??? I have had this a few times and it's really scary. I feel like I'm having a stroke or something until I have a huge bowel movement and I feel so much better.
5. Does anyone else get horrible right lower quadrant pain when having a bowel movement from time to time?
Thanks in advance to anyone who takes the time to read/respond!!
-Sarah
Sidenote: No known family history of MC... I do have a cousin on my father's side with Ulcerative Colitis and another cousin who is their older sibling who has celiac disease.
I feel bad that you've had to endure MC/LC so many years now 