Patient Comments: Microscopic Colitis - Prognosis

What is the prognosis for your case of microscopic colitis?

Comment from: Chained to bedpan, 55-64 Male (Patient) Published: November 04

At age 50, after 30 plus years of reporting diarrhea and bouts of extreme weakness and fainting, to doctors, one did a simple blood test. Then I had a colonoscopy to confirm celiac sprue. Small intestine all but eaten away by own immune system, villi gone, flat land. Eating, but starving. I was also diagnosed with collagenous colitis, sometimes associated with celiac. Five years of gluten free diet has improved nutritional uptake. Colitis has stolen my life. Analogy: use a small balloon, fill 1/3 with soda (Coke or Pepsi will do), now shake vigorously, hold the opening down and try to let the ever increasing pressurized gas out without making a terrible mess. Attacks are frequent, 10 to 30 plus times/24hrs. Sleep is interrupted every 1 to 4 hrs. Avoid fibrous foods, they promote gas production. Entocort has improved things approximately 10 to 15%. It has cut down on the mucus, associated with the cramping. It is hard to remain positive when sleep deprived. Wearing a bag is an option, but I'm not ready for that yet.

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Comment from: Pike patient, 55-64 Female (Patient) Published: September 04

One month ago, through biopsies taken from colonoscopy I was diagnosed with microscopic colitis. My gastroenterologist guaranteed me that the steroid Uceris once a day for three months would cure this disease. I hope he's right. It has been one month. I have had such terrible pain frontal pain where ovaries would be (I have none.) and lower back. I've heard from some including my primary doctor that a gluten free diet would also help. I have no more diarrhea, on the contrary I am mostly constipated, and perhaps this is what is causing the pain.

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Comment from: Randall, 65-74 Male (Patient) Published: September 15

After 4 years of problems, I got a diagnosis of microscopic colitis. They prescribed budesonide and after 4 months the benefits are still there. I had a bonus, in that it made my severe arthritis and spinal stenosis almost disappear. My concerns are how long I will be able to take it. I am now buying through Canada due to the high price here in the States and though still expensive, it has given me my life back and worth it.

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Comment from: Sunonme2day, 55-64 Female (Patient) Published: August 31

I have been sick since 2014. I was with a gastroenterologist who ran every test and found nothing. I had diarrhea constantly, nausea, fatigue and aching joints. He never suggested anything, wrote me a prescription and sent me on my way. I made a visit to a surgeon, my gall bladder was dead and I had multiple bands of fat wrapped around my intestines, so tight closing up. I have since found a new doctor and he has been a blessing. He has run tests with biopsy and I have lymphocytic colitis. Just remember everyone is different, you might need to try several medications before one is right for you. Another note, I never lost weight due to this condition because my diet was crackers, potatoes, cheeses and peanut butter. I had to work and this would help me during my work day. If you are seeing a doctor who seems to dismiss you and your symptoms please find another one. I also was suffering from depression due to my life changing illness. I am taking VSL3 with Lialda and trying to start walking and regain my strength. Wishes of wellness to each of you.

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Comment from: carol, 65-74 Female (Patient) Published: August 24

I have had lymphocytic colitis for 20 years. Asacol and Entocort did not work for me. Pepto-Bismol is my drug of choice and does a fairly good job of keeping it under control. My problem is that I have constant joint pain, very fatigued, dry skin, constant dehydration and no appetite. I also get low grade fevers (99 to 100 range). All lab work for an inflammatory disease have been negative. I am also aging much faster than I should be. I only weigh 107 lb. (normal for me) but my quality of life is poor and getting worse. My family does not understand this disease and I have no one to talk to about it. When you know somebody else who has it, at least you can laugh about having diarrhea in bed, on the floor, passing gas and finding out it wasn't gas after all. Good luck guys.

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Patient Comments

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Microscopic Colitis - Treatments Question: What was the treatment for your lymphocytic colitis?
Microscopic Colitis - Cause Question: What was the cause of your lymphocytic colitis?
Microscopic Colitis - Symptoms Question: What symptoms did you experience with your microscopic colitis?

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