Patient Comments: Microscopic Colitis - Symptoms

Question:

What symptoms did you experience with your microscopic colitis? Submit Your Comment

Comment from: Michael , 65-74 Male (Patient) Published: April 26

My husband's symptoms of microscopic colitis are nausea, vomiting, weight loss, loss of appetite, stomach upsets, indigestion, heartburn, abdominal pain, bloating, especially after eating, anemia, and weakness every week. My husband has it for the past 3 years. No one knows what's wrong with him!

Comment from: JC, 35-44 Female (Patient) Published: November 15

I was diagnosed with microscopic colitis in 2012. I used Pepto-Bismol, Entocort and Florastor. My symptoms were more mucus in diarrhea, cramping and weight loss. At one point, all I would eat was rice, toast and simple proteins. I finally went into remission, started juicing, and learned to avoid food triggers (I am lactose intolerant, so I avoid eating out a lot). I also avoid extremely greasy or spicy food. I use Florastor when my gastrointestinal system is off, and when put on antibiotics. Some things I've noticed, are: IBD (irritable bowel syndrome) goes hand in hand with other autoimmune disorders. I can't use NSAIDs, and I am vitamin D deficient.

Comment from: milori, 65-74 Female (Patient) Published: August 18

I was just diagnosed via biopsies from a colonoscopy with collagenous colitis after 4 months of increasingly explosive watery diarrhea. I had pain and cramping and had to stay near a bathroom at all times. I couldn't take it anymore and finally saw my primary doctor, who did specimen tests which came out negative, and prescribed Imodium and then Lomotil, both of which were ineffective. She referred me to a gastroenterologist, who performed the colonoscopy, made the diagnosis and put me on budesonide. I have been on the budesonide for a little over a week, and the symptoms have pretty much normalized. This is a 12 week regimen and I am nervous that the symptoms will return once I go off of it, but trying to keep a positive outlook that the regimen will take care of the problem. I am so grateful that there was a medication that could bring the miserable symptoms under control.

Comment from: Carol, 55-64 Female (Patient) Published: November 25

I have irritable bowel syndrome (IBS) and microscopic colitis. It started 3 years ago. I lost 35 lb. It took a year to gain weight back. I got sick again about a year ago and lost 35 lb. again. I have gained about 8 lb. in 6 months. I am 5 ft. 6 and weighed 98 lb. I had lots of pain. Now I am diabetic from all the steroids. It is almost impossible to gain weight when you are on a diabetic diet and colitis diet at same time. When I am under stress colitis gets worse. Stress plays a big part of starting colitis into action. If I do not gain more weight within 2 to 3 weeks I have to go into hospital again. My doctor says I cannot continue at this weight. He said I have nothing left to fight off anything because I am so skinny. People I know say you need to eat you are too skinny. I am so tired of hearing this. I just reply I am sick I try to eat but pain and going to the bathroom 15 times a day makes it impossible. Some people act like I want to look like this. I do not even like to look in the mirror. It is not pretty when you can see every bone in your body. I have found out dairy, fiber, fresh fruits, fresh vegetables and sweets are not agreeable to me at all.

Comment from: bookreader, 65-74 Female (Patient) Published: October 22

I've had IBS (irritable bowel syndrome) for over 30 years. When I reflect back I had CC for perhaps 10 years before I was diagnosed. I finally went to my gastroenterologist when the diarrhea was beyond the count. I took over 8 Lomotil in 2 hours, plus Imodium, Pepto-Bismol, Citracal and I had Bentyl, (on vacation out of the country) so I took that. Diarrhea for 8 hours straight and at 6AM I finally took a sleeping pill and let it be. On my return I made an appointment and told the doctor all that had occurred. In addition, I was incontinent at night 1 to 3 times a night at times most nights. My doctor immediately pulled the biopsy slides from last colonoscopy. He called me 2 days later with diagnosis of collagenous colitis. He put me on Asacol 2 to 3 times a day; I had a reaction to Asacol, a low grade temp. The doctor took me off it for 2 weeks and decreased the dose. I returned to the doctor in 1 month and still with diarrhea. I had ordered codeine on top of all OTC & Lomotil. Codeine did help. The doctor put me on Entocort 3mg tablets 3, 9mg once a day. I think I responded in about 6 weeks; I became constipated and he cut the dose to 2 a day, eventually titrated off because of my constipation.

Comment from: Mia, 55-64 Female (Patient) Published: January 12

You are wrong about no sign of inflammation in the colonoscopy with microscopic colitis. I was diagnosed, with biopsy, to have microscopic colitis. There was clearly visible inflammation in the colon. That's how I knew I had an IBD (irritable bowel disease), but had to wait for the results to know which one. Current, up to date, literature also finds that assuming every case of microscopic colitis has no visible inflammation is wrong. There is even a medical journal article that suggests the name 'microscopic colitis' needs to be changed because of this new knowledge.

Comment from: Lorraine, 55-64 Female (Patient) Published: December 21

I was diagnosed with collagenous colitis 3 years ago after having had diarrhea for about 3 months. My doctor said it would eventually get better, and it did with careful food elimination, label reading, eliminating most processed foods, condiments, soda, and milk products. Not easy! From reading about causes, I was on simvastatin and also used artificial sweeteners, so I believe those played a role, in addition to a lot of stress from having drug addicts among our family members. I recently had foot surgery in August his year and was on aspirin twice daily for 6 weeks to avoid blood clots since I was non weight bearing. I was also on meloxicam, a prescription anti-inflammatory medicine which caused a flare up which I have been dealing with for 3 months. I take Imodium usually once a day and psyllium husk in my breakfast smoothie every day. I discovered this week that I have what's called a bone stall, a slowing of my bone healing after surgery that is likely caused by my flare up and will have to have further medical help to continue healing. This is not fun! I'm sure hoping to get this flare up under control soon, but it is more difficult this time around with Christmas parties!

QUESTION

Bowel regularity means a bowel movement every day. See Answer
Comment from: Laurie, 65-74 Female (Patient) Published: December 31

My gastroenterologist suspects I have microscopic colitis. Not only do I have bouts of diarrhea but I vomit too. I haven't had a biopsy because I'm on Coumadin with which colonoscopy is difficult.

Comment from: Jane, 65-74 Female (Patient) Published: October 15

I was diagnosed with lymphocytic colitis in 2010. I had chronic diarrhea for 4 months and ended up getting dehydrated and was put in the hospital for five days. My symptoms were chronic diarrhea, fatigue, abdominal pain and cramping.

Comment from: mckone2dallas, 45-54 Female (Patient) Published: December 05

I and 4 other people I know with this auto immune disease have very bad cramping, very similar to being induced with Pitocin for having a baby. Mine are horrible, like I have been kicked with a steel toed shoe. I feel weak like I'm going to fall down while at work, I grit my teeth and hold on to something just to stay standing up! Add in running to the bathroom 15 times in 2 hours every day! Everything causes more pain.

Comment from: cookierob, 65-74 Female (Patient) Published: August 13

I had diarrhea for 6 weeks and by the time I got a GI dr. appt it was 9 weeks. The PA took a thorough history and set up a colonoscopy. He predicted it was microscopic colitis and he was right. I'm being treated with budesonide {a steroid} 2weeks of 3mg, 3 capsules a day, then 2 capsules for 2 weeks and finally 1 capsule a day for 2 weeks. I'm at this stage it's much better now. But still loose mostly. I take immodium when I have a long drive or plans.

Comment from: Linda, 55-64 Female (Patient) Published: August 12

I just got diagnosed with collagenous colitis. I had 3 months of bad diarrhea, no blood. Nothing helped the diarrhea. Got my colonscopy. Turns out I had the protozoa-Entamoeba histolytica! My doctors think this is what caused the colitis and I'm in my first week on 2nd antibiotic. I wonder how many folks actually have this and just don't know. You have to get a good sample of the tissue to actually catch these critters. I believe the walls of my colon building up the collagen is what kept the bug from getting thru into my bloodstream and forward to liver/brain, etc. I hope this helps those that way still can't find the problem. I'm not out of the woods yet as the diarrhea hasn't let up much (but some). I will give extra care to my colon as I have done for long time, but who'd have "thunk" I'd get a parasite.

Comment from: Iolanthe4, 45-54 Female (Patient) Published: March 20

I had terrible watery diarrhea, nausea, cramps, bloating, and did not feel well at all.

SLIDESHOW

Digestive Disorders: Common Misconceptions See Slideshow

Subscribe to MedicineNet's General Health Newsletter

By clicking Submit, I agree to the MedicineNet's Terms & Conditions & Privacy Policy and understand that I may opt out of MedicineNet's subscriptions at any time.

CONTINUE SCROLLING FOR RELATED SLIDESHOW