Patient Comments: Microscopic Colitis - Prognosis

Question:

What is the prognosis for your case of microscopic colitis? Submit Your Comment

Comment from: SH, 45-54 Female (Patient) Published: October 02

I have had microscopic colitis for 10 years. Entocort controlled it, but when our insurance changed the cost was way too much. I stopped Entocort and had a long flare up, new my gastroenterologist put me on 100 mg 6-MP (mercaptopurine). This has controlled the disease, and it is a lot less expensive than other options.

Comment from: Tlj, 55-64 Female (Patient) Published: February 24

I was diagnosed with lymphocytic colitis 14 years ago. Always thought I had irritable bowel for several years before that, but my gastroenterologist said they are two different things. I originally did the Pepto-Bismol tablets, 2 tablets 4 times a day. It seemed to work. I have steadily gotten worse with each flare up. I have done Xifaxan twice, not much help. I took budesonide in 2013, but after a couple months started getting blood patches on my arms. Doctor said that was from this steroid. It got better a few months after stopping. I too have done Align, with some good effect for a while. I then used cholestyramine, 1/2 packet twice a day, but this is just a Band-Aid, and causes constipation and gas for which I take gas pills and Bentyl, which eases the pain. Sometimes Imodium helps, but then when I do go, it is explosive and very smelly. I tried Saccharomyces boulardii (brewer's yeast) pills, and they helped for a month or two, then it came back. I have been successful with gluten free lately, but I have suddenly gotten bad again. I am going back to Pepto-Bismol tablets for now, because I am going out of town in a couple weeks and would like to have a calmer stomach. Apparently this is my life, always changing things around, and living with this. I also started zeolite (Esdifan) which is showing some promise. I posted just to give some things for others to try, maybe they will be successful.

Comment from: Firstaidangael, Female (Patient) Published: June 29

I was diagnosed with microscopic colitis in 2004. I have taken every known medicine with a lot of cost and no relief this way. What I have found that controls my symptoms is no processed foods, no gluten (sensitivity will not show on a test only intolerance), and stress is a huge factor. What I was told might have been my root cause was when I was 16 years old I had water poisoning that made me very ill. I am currently looking into Chinese acupuncture (western does not follow the same practices) to help with fatigue.

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.

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.

Comment from: Relieved, 65-74 Female (Patient) Published: January 31

I have been diagnosed with microscopic colitis. I have found that if I take one loperamide each day that I am back to normal. I started out taking 2 every time I ate or drank anything with calories in it. Then eventually I only needed one each morning. It is very inexpensive. I buy the Walmart brand Equate anti-diarrhea pills. They are 88 cents for a package of 12. I am no longer afraid to go anywhere. If I don't take it the diarrhea will return, so it is not a cure, just a treatment and it works!

Comment from: Blondie, 65-74 Female (Patient) Published: August 30

I am 71 and I started having diarrhea from microscopic colitis about 3 years ago. My gastroenterologist put me on budesonide which luckily my insurance covers. I still have diarrhea and flare-ups. Maybe I am not taking enough. I am going to Europe in less than a month and am worried about how I can go out and do things. I am going to up my doses of budesonide and maybe also take Pepto-Bismol. This is a very private illness; I want to tell my husband 'I am sick' but I can't.

Comment from: JAS, 55-64 Female (Patient) Published: October 31

I have had chronic diarrhea for over 4 weeks. I had a colonoscopy which came back as microscopic colitis. There doesn't seem to be an answer for this, why it happens, what it is caused by, and how to treat it. Pepto-Bismol has been ineffective. My stomach is also burning all the time.

SLIDESHOW

Digestive Disorders: Common Misconceptions See Slideshow
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.

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.

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.

Comment from: ansels2, 65-74 Female (Patient) Published: May 13

I have had microscopic colitis for 15 years now. For the first few years (5 or 6) I was able to manage it on a GF (gluten free) diet. Now it's like I am allergic to food, period! This disease is a death sentence for many people. We get thinner and thinner and the doctors just keep you on budesonide, etc., asking you to try and wean. This is an impossible task. Unless you want to stay in the house constantly. Which I would, and have, in order to wean off, but it doesn"t do any good. The quality of our lives just sucks, plain and simple. This should be researched seriously! No research is going on with it. I feel so alone. No support groups, etc. I could go on and on… when you cannot eat, guess what? You just wither away and die! Plain and simple.

Comment from: froggy61966, 45-54 Female (Patient) Published: August 06

I am a 48 years old female that was told I had microscopic colitis after a colonoscopy in December 2013 was placed on budesonide. I did really well on it for 2 months. I was taken off medication and then a month later the watery diarrhea, cramping and abdominal pain is back. I am now at the end of my rope and don't know what to do anymore.

Comment from: klp53, 45-54 Female (Patient) Published: June 19

I have been struggling with lymphocytic colitis for 4 years. I feel as though I am wasting away. I can go weeks/months taking myself off of food because everything sends me to the restroom. I wonder if anyone else has overwhelming fatigue. I am on steroid when I am really bad, so I am not sure if it is lack of nutrition or the steroid. Sitting here now at work, if I could lay my head down, I would be out in seconds. It sucks and a lot of people have no idea what it is like.

Comment from: J, 45-54 Female (Patient) Published: November 21

Diarrhea started at 46. I thought it was from stress. I had colonoscopy and was told I had IBS (irritable bowel syndrome) and prescribed antidepressants. At 52 I had another colonoscopy and was diagnosed with microscopic colitis. I was prescribed Asacol, no help, then prescribed budesonide. I finally had normal bowel movement, but medicine made me feel tired and depressed plus I got a bad yeast rash. The diarrhea returned 1 week after stopping, I am thinking about taking budesonide again even though side effects were bad, diarrhea is worse! Pepto helps slow things down, I'm really getting sick of this! I hope it goes away soon.

QUESTION

Bowel regularity means a bowel movement every day. See Answer

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