Anybody diagnosed with microscopic colitis?

Posted by bobthebuilder54 @bobthebuilder54, Oct 12, 2011

Hi, wondering if anybody here has this for a dx. I have been having a flare for about two months, it is getting a little better with the meds but the doctor wants me to go on a short dose of steriods. I already have a muscle disease so hate to go the steriod route, (plus do not need to gain weight) lol. But if anyone has any hints for me I would appreciate it on how to control this. It is the longest flare I have had.
Susie

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Profile picture for cim37343 @cim37343

My husband has microscopic colitis which he could always control with large doses of pepto bismol. Recently however he has had a four week period of diarrhea that is not helped by pepto or even kaopectate. He decided to go off gluten to see if that would help. That has not helped. He has an appointment with a new GI doc tomorrow. I’m assuming he will offer another med that may help. Is anyone on a specific med for this condition that has helped?

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Follow up on my husbands collagenous colitis that no longer responded to pepto bismol. His doc said try Imodium. If it works just stick with that.

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Profile picture for Kristi Motch @kristimotch

I am looking for others diagnosed with microscopic colitis. I'm new to the group and the condition. Any help or information about what my future holds would be appreciated.

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Gastroenterologist diagnosed me with lymphocytic colitis. This was after my 3rd colonoscopy and special test to detect blood which did show up microscopically. I had gall bladder surgery 4 years ago and have had persistent diarrhea since surgery. Also have had dramatic loss of weight from 130 to 98 plus extreme weakness. Would appreciate any sharing of treatment or medication that helps deal with this problem.

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Profile picture for Kristi Motch @kristimotch

I am looking for others diagnosed with microscopic colitis. I'm new to the group and the condition. Any help or information about what my future holds would be appreciated.

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Have you tried OTC Imodium. My husbands diarrhea subsided and hasn’t returned after three pills. Doc said if it works keep it up.

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Profile picture for petepat3234 @petepat3234

Gastroenterologist diagnosed me with lymphocytic colitis. This was after my 3rd colonoscopy and special test to detect blood which did show up microscopically. I had gall bladder surgery 4 years ago and have had persistent diarrhea since surgery. Also have had dramatic loss of weight from 130 to 98 plus extreme weakness. Would appreciate any sharing of treatment or medication that helps deal with this problem.

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@petepat3234 - I was first diagnosed with collagenous colitis 10 years ago- out of the blue. None of the OTC meds did more than allowing me out of the house for a couple of hours. At one point it was so bad I could not leave my room/ bathroom. The GI doctor then treated me with methotrexate. I was also extremely weak from loss of fluids and electrolytes. I drank Gatorade and Pedialyte. The illness returned after a year or two- waxing and waning, leaving me very exhausted and weak at times. Budesonide took the edge off symptoms and prednisone made me feel normal- until I stopped it. Finally, 4 years ago, I was put on immunosuppressive Imuran for several months. It was rough but it worked.
I ended up with normal function, except IBS, but feeling extremely exhausted. In my mind it is the result of chronic”acute” stress for years when there was pain/ discomfort every day - like being burned out.

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Profile picture for Kristi Motch @kristimotch

I am looking for others diagnosed with microscopic colitis. I'm new to the group and the condition. Any help or information about what my future holds would be appreciated.

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I was diagnosed with microscopic lymphatic cystosis after 3rd colonoscopy. This occurred about 3yrs after gall bladder surgery. Still have diarrhea, 3 to 4 times a day.

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Profile picture for Kristi Motch @kristimotch

I am looking for others diagnosed with microscopic colitis. I'm new to the group and the condition. Any help or information about what my future holds would be appreciated.

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@petepat3234 - it sounds like you still have the colitis inflammation- especially if you feel weak too. Has your doctor discussed any immunosuppressive medications?

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Profile picture for Ingegerd Enscoe, Alumni Mentor @astaingegerdm

@petepat3234 - I was first diagnosed with collagenous colitis 10 years ago- out of the blue. None of the OTC meds did more than allowing me out of the house for a couple of hours. At one point it was so bad I could not leave my room/ bathroom. The GI doctor then treated me with methotrexate. I was also extremely weak from loss of fluids and electrolytes. I drank Gatorade and Pedialyte. The illness returned after a year or two- waxing and waning, leaving me very exhausted and weak at times. Budesonide took the edge off symptoms and prednisone made me feel normal- until I stopped it. Finally, 4 years ago, I was put on immunosuppressive Imuran for several months. It was rough but it worked.
I ended up with normal function, except IBS, but feeling extremely exhausted. In my mind it is the result of chronic”acute” stress for years when there was pain/ discomfort every day - like being burned out.

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I've been wondering about the immuno-suppressive medications. I took budesondide for 2 or 3 years until my skin was so thin it would just peel off! I've gone off it, but the usual "col" what-ever-they're-called pills and powder just DON'T do the job. I've had this for about 20 years. I've had cancer twice, which is the reason I haven't done one of the new ones, but I'm wondering if you can take it anyway and just be closely monitored. I'd like to hear from anyone who might know about this conundrum. Thanks.

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Profile picture for dval @dval

Hi! First of all, I am so sorry your son has UC. Yes it is a chronic condition, but there are several ways to treat it and some people do very well with first line treatment. I am assuming the doctor has prescribed mesalamine (some brand names are Lialda, Canasa, Asacol). These can be taken orally, rectally or both. If the UC is ulcerative proctitis, they usually start you with the mesalamine suppositories. Some people stay at that level and do well on these drugs for years! I started with proctitis but the UC continued to move up the lower intestine and became pancolitis. The oral mesalamine and suppositories worked well for me the first few months and I believe they would have continued to work well, but I developed drug induced pancreatitis and had to discontinue immediately. That's when things became worse quickly and it was a struggle and a learning curve to see what else would work.

I am hoping your son does well with the mesalamine! Next line would be steroids and they usually start you with budesonide, which is safer than prednisone, but either one is short term, just to calm things down; they are both available rectally too. I am currently on the biologic infusion, Entyvio, and that seems to be working well; however, I had started a plant based diet a week before starting the infusions and I am thrilled to report that things have been "normal" for almost 3 months! There has been NO bleeding, no diarrhea and bathroom visits have decreased from 12-15 daily to 2-3! I have also been maintaining weight (I had been losing a half pound a day!) Despite the science behind the biologic, my doctor strongly supports the plant based diet, and there is a lot of clinical evidence that it does indeed make a difference. If he starts out slowly, just eliminating dairy, and then meat... it may be less painful. I personally don't miss meat at all, but I do miss cheese and ice cream, but this new way of eating is a small price to pay after what I have been through. When my doctor told me a few months ago that the UC was fulminant, and recommended a colorectal surgeon, I was terrified.

So I would recommend that he try the mesalamine (I am assuming that's what he'll be taking). I hope and pray this will work for him and the UC will stay at this level!!! I am also taking the probiotic, VSL#3 (also recommended by my GI doc) twice a day. So, that, a plant based diet, and exercise are what I would advise, based on my experience. It is a horrible disease, but there is hope and there are many things out there that do work. Everyone is a little different in how they respond to different treatments. His doctor can monitor with labs (blood and stool) to check the inflammation markers and scope to check the mucosal lining, I wish you the very best of luck and hope I have answered some of your questions. Please don't hesitate to reach out if you have any other questions. It's amazing how much you learn when you have a condition like this, and you get to the point where you're not even embarrassed talking about poop. LOL
Good luck
Donna

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My GI docs (there have been several) have just seemed to try, over the years, different meds, sort of trial and error, but most don't help or have nasty side effects (budesonide). Does anyone think I'd do better to go to the Mayo clinic and get a full work-up, where they are absolutely up on the latest drugs, clinical trials, etc.? I'd be willing to go to Rochester (from Seattle) if it'll be worth it. After 20 years of this, I feel like I'm just giving up life altogether and not even trying to actually GO anywhere. I see most of you agree to how depressing it is. I would go there, also, to get more information on the plant-based diet, etc.

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Profile picture for MaryMar @marymar

Kristi, I was diagnosed about 4 months ago with Lymphocytic colitis after weeks of discomfort. I was able to get it under control with probiotics, decreasing my caffeine intake and watching what I ate. Another doctor recently put me on antibiotics for another problem and now the colitis has flared up again. Like you, I am new to this, and would appreciate any help others have to offer.

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I had a similar experience with an anti-biotic...it set off my worst symptoms again. I'm still trying to get it under control. I took budesonide for a long time, until the side effects became too bad, and when I went off it I found out how your symptoms come right back. I'm working with my GI doc to try some less invasive stuff, but if that doesn't work, I'll probably go to the Mayo Clinic when the weather gets better.

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Profile picture for mjgarr @mjgarr

<p>I have MC. Drs. are saying it might be caused by an Autoimmune condition. Does anyone know about this.</p>

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I've had MCS (multiple chemical sensitivities) since 1990, which is related, in my experience to people who have Chronic Fatigue Syndrome, Fibromyaligia, and even Sjogren's syndrome, like my sister has. We share a lot of the same symptoms. I also took Aleve for a long time, which could have caused it. Unfortunately, the LC is linked into my incontinence, but ONE THING AT A TIME!

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