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I am a new member, and I would like to share my experience with my illness up to now. I started having severe diarrhea mainly at night about 18 months ago. I became exhausted and sleep-deprived because I was up many times going to the bathroom every night. I tried a gluten-free diet and it helped for the first two months, but then it did not help any longer. I saw a doctor who said it was probably IBS. Because a polyp was found on a colonogram, I had a colonoscopy with biopsies two months ago. Before the colonoscopy I tried pepto-bismal as I suspected that I had microscopic colitis. I just got the results of the biopsies, and I have lymphocytic microscopic colitis. My doctor prescribed Enterocort which I have taken for three days now and it is already helping. He warned me that the diarrhea could come back when I stop taking Enterocort. I am not sure how long I need to take it. He gave me three months supply, 9 mgm. daily.
I had never heard of this disease until I went on the celiac website. Now I have found this website which looks like it is going to be very helpful. I am looking forward to reading the posts.
Welcome! You have come to the right place for support and information.
The vast majoiry of us have found that diet is critical in managing the disease. Most follow a gluten free diet plus some other restrictions. Your experience with gluten is not uncommon - works for a little while and then D returns. That most likely means that you are gluten intolerant plus you now have an additional sensitivity, maybe dairy or soy. I forst went GF, then a month later I went DF and then the next month I went SF. I have multiple sensitivities but if I stay away from these foods I can manage without meds.
There is much to learn on this site. I encourage you to surf around and ask alot of questions.
Welcome aboard!
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Yes, as Mary Beth mentioned, we have learned that the immune system typically only responds to a single issue at a time, so it selects the one that it perceives as the worst problem, namely gluten. Once the gluten-free diet is adopted, it usually takes a couple of months for the body to reduce the production of gluten antibodies down to a level where they no longer dominate our immune system, and at that point, our immune system begins to notice antibodies from casein, (the primary protein in milk, and all dairy products), and it begins to react to to dairy products. For some of us who are lucky, avoiding gluten and dairy products may bring lasting remission, while others, (about half of us), have to avoid soy, also, and some have to avoid other foods to which they are sensitive.
Many of us here are able to control our symptoms by diet alone, while others, with severe cases, also take a maintenance dose of a medication, in order to maintain remission. Many members find that if they carefully control their diet, they can taper off the Entocort after 6 months to a year, though some need more time. We are all different, in our symptoms, and in the way that we respond to various treatments.
Again, welcome to the group, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I also have LC and had the same experience as you at the outset. I dropped gluten and dairy and felt like a new person almost overnight. My bloating and pain disappeard and the D decreased 80%. Unfortunately, within a couple of months, the D was creeping back, so I cut most soy and yeast and tried to cut out too much fiber from salad, raw veggies, beans, etc. I only take Pepto on rare occasions if I feel I need help. I was offered Asacol, but I got scared when I read about possible hairloss. So I'm doing it alone and doing fine, although not in complete remission, but I have my life back.
You have reached the most comprehensive Microscopic Colitis website in the world. There is a wealth of information here and you will learn a lot from reading. You will get your life back and you will learn how to manage this disease.
Aquilegia wrote:My doctor prescribed Enterocort which I have taken for three days now and it is already helping. He warned me that the diarrhea could come back when I stop taking Enterocort. I am not sure how long I need to take it. He gave me three months supply, 9 mgm. daily.
Entocort can be a life-saver for many of us - it has been for me. When your doctor warned you that your D could return once you stop taking Entocort, he was correct. If you don't want it to return, I would suggest that you use this time that you are on Entocort to change your diet, as others have recommended.
We look forward to working with you and getting to know you.
Gloria
You never know what you can do until you have to do it.
Aquilegia, welcome! I joined about a month ago and have already learned an amazing amount.
Aquilegia is one of my favorite wildflowers - I'm guessing one of yours, too... just saw the first signs of it returning in my backyard this morning (the red-and-yellow one that grows in the eastern US/Canada - not sure whether you were thinking of one of the other lovelies!).
I'm eating a more limited diet than (I hope) I will eventually have, based on the experience others here have shared (and figuring I don't really know my triggers). I feel it has helped enormously, along with Pepto-Bismol (which has helped some here but also given many others reactions, so I have cut back quite a bit and hope to be done with it this week). In the first couple of weeks, I found that some foods that didn't increase the cramping or diarrhea did cause a little bit of bloating, so I dropped even my trusted white rice, and all grains and legumes, along with dairy.
As others have mentioned, we each seem to have a unique version of this disease, and what works for some doesn't help others. I hope the Entocort quickly aids you in getting a handle on your own personal path to healing and recovery, and that you're finding foods that work for you. For me, having a few go-to foods made me more comfortable than eating something and worrying about how I'd handle it.
I've had a lot of chicken broth (and am getting better at making it quickly and making it tasty), then gradually added meats, pretty well cooked vegetables (sweet potato, carrot, turnip, and this week I had some greens and they agreed with me - YAY)... and applesauce, bananas, and a couple of other fruit experiments in small amounts.
In my MC course, I've had terrible diarrhea troubles at night, many times, but during those times I also have at least some D during the day as well. I think the few days when I did not, it was because I slept ivery late, and didn't eat until later. I am now eating my biggest meal early in the day, and trying not to eat big meals at night, or too late. (I don't know if any of those foods or strategies will help, or work in your life.)
And I hope you're getting some sleep! 18 months is a long time to be sleep-deprived. Hopefully as the Entocort kicks in, and your dietary changes allow you to heal, you'll also begin to recover your beauty rest, and that will certainly help as you rebuild strength and spirit and health.
Sara,
Thanks for the reply. Aquilegia is my favorite flower. I have some of the wild ones which I think is called Aquilegia Canadensis and I have other more exotic varieties.
I don't think that I have a problem with gluten. I went on a gluten-free diet for seven months, then went back on gluten for some tests, then went back to gluten-free for three months. I also avoided soy and I don't eat dairy products except for probiotic yogurt and aged cheddar. Those are supposed to be OK. I was the same on gluten as when I was off gluten. I went back to eating gluten because I was not willing to give up something for life when I was not sure it was causing a problem.
Now I have found that I cannot eat raw vegetables, raw fruit, nuts, and beans or lentils. Maybe that will change with healing. I hope so.
The Enterocort has saved my life or at least given my life back to me. It has taken a year to get a diagnosis. The colonoscopy was ordered in August and it took until the end of January to get it done. It took two more months to get the results so it has been a long haul. Now I have been on Enterocort for five days and my nights are diarrhea free. I can sleep!
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