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Hello! I'm a newbie and it's so nice to find all of you! Was recently diagnosed with CC after 2 years of wondering what was wrong with me?!
After several months of D I decided I needed to do something about all the numerous trips to the bathroom, the stomach cramps, malabsorption and weight loss. My first colonoscopy and upper endoscopy a couple of years ago revealed ulcers and diverticulitis. My digestive disease doctor prescribed Desipramine in increasing doses to try and stop the big D. I ended up on 150 mg.’s and thought, holy cow, this should stop up an elephant! Not the case for me.
In recent months it just kept getting worse and I decided I just couldn’t live like this any longer. So I went back for another colonoscopy and upper endoscopy. Laying there before the procedure I looked at my doctor and asked him to please, please, find out what was wrong with me. When I woke up he said they found a polyp and he had taken several samples of my colon and would let me know as soon as possible if they found anything.
He called me the next evening and said they found something! I was so excited to finally have a diagnosis! I had never heard of CC but after some research (good ol’ Google and Bing) I was surprised to discover it’s rare and possibly linked to having an autoimmune disease. I’m hypothyroid and had thyroid cancer in 2008. They removed my thyroid and after some radiation I’m in remission. I wonder if my thyroid problems had anything to do with developing CC? The polyp they removed was also precancerous. He said it had high-grade follicle dysplasia. I don’t know if the CC was part of the reason I developed the polyp or if CC might have saved my life? My doctor said had I not gone back in and waited for ten years (that was the ten year pass I was given on the first colonoscopy) I would have had full-blown colorectal cancer.
Looking forward to supporting you as well as learning about how to live with CC.
Welcome Dana Lee...........wow a lot of newbies have arrived lately. That's great to grow this group but not great that so many folks are appearing with this disease. You have come to the right place and ask away to these experts............they have ssssssooooo much knowledge and insight. Bless you for dealing with this for 2 yrs before you got a dx. I was in total distraught for 2 and 1/2 months before I got the dx. Now on my 2nd stage of weaning off entocort. They have lots of good suggestions for you to try. My best suggestion is to start reading all these posts................you will be amazed.
Welcome to our internet family. Before I forget to mention this, I need to point out that the tricyclic antidepressants (and SSRIs and SNRIs, also) trigger CC/MC for some of us. Others find that they sometimes help to control D (probably because stress seems to be implicated in the development of this disease). If it doesn't help to control the D, then the odds are rather high that it may be contributing to the D. So if you are still taking that drug, and you find that making the diet changes that the rest of us have made, or taking an anti-inflammatory drug do not seem to help, then you may need to discontinue (wean off) taking the desipramine, in order to achieve remission from your MC symptoms.
Yes, MC is definitely associated with other autoimmune diseases, and a poll of the members here shows that we are approximately 7 times as likely as someone in the general population to develop thyroid problems. Many of us have several other autoimmune issues. The good news is that controlling our MC symptoms, we cut the chances of developing additional autoimmune issues down to the same risk as someone in the general population.
I'm a firm believer that every cloud has a silver lining, and it's certainly possible that your diagnosis of CC may indeed have saved your life. While no medical research has been done to back this up, some of us have found that by taking enough supplemental vitamin D to get our blood levels up to at least 40 or 50 ng/mL, we seem to stop developing polyps (as verified by future colonoscopy exams). It's known that vitamin D reduces the odds of developing colon cancer, and perhaps this is the mechanism by which it does that (by preventing the development of polyps).
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
P. S. By the way, MC is actually not rare at all. In fact, it is more common than both Crohn's disease and ulcerative colitis. It is approximately 60% more common than celiac disease. The doctors consider it rare because the only way that it can be diagnosed is by examining biopsy samples from the colon under the microscope and looking for certain markers of the disease, and for decades, they rately looked for it. It was originally described as a disease of older women, and so even to this day, many GI specialists fail to look for it in younger people, and in men. IOW, they didn't look for it because it was considered to be a rare disease, and that designation became a self-fulfilling prophecy.
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 probably shouldn't have let it go on for so long. I was just so sick and tired of going to doctors and I thought I could just
live with it and handle it myself. I was wrong! I'm on entocort too. My digestive disease doc said I have to have another
colonoscopy in 3 months. Read somewhere you can mix the "go juice" with margarita mix? Or gatorade.
Tex, thank you so much for the information! A few years ago I given Celebrex and later Naproxin for osteoarthritis issues.
They might have contributed to the CC. It's good to know it isn't a rare disease. My son works out all the time
and told me he would never eat anything that came in a box. He eats fruits, vegetables and a lot of grilled chicken. I'm thinking
I need to really to do a better job with my diet. I stay away from wheat and raw fruits and vegetables aren't my friend.
Looking forward to reading more posts and so happy I'm not alone on this journey to better health.
to the Potty People. Wow, that's great that they were able to find the precancerous polyp and save you from great troubles down the road. But I'm still sorry you have MC.
Hi Dana Lee and welcome. You've been through a lot, but you are in the right place for some answers. The more you read from this forum, the more you will see that Diet is the key to healing. You didn't say how long you have been on Entocort and if it was working, but remember that if you don't address diet, when you wean off the drug, your symptoms will likely come back.
There are foods that CAUSE inflammation and there are others that irritate. The raw fruits and veggies are irritants for now and may be able to be "tested" back into your diet once you have had some healing. Gluten is the biggest inflammation culprit and dairy follows right behind. Soy is after that and then eggs for some of us.
I got rid of gluten and dairy right away ( along with raw fruits and veggies, nightshades, beans...). Along with Entocort, that seemed to do the trick. As I was weaning off the drug ( after 4 months), I noticed I was reacting to soy also, so that came out . The good news is that I was able to get off Entocort entirely and have been able to add some of the irritants back in ( beans, salad, a little wine, a little fruit, a little dark chocolate). Your son is right. Processed foods are not our friends. There is light at the end of the tunnel.
There is a lab called Enterolab ( check out their web site) and if you can afford it, you can send a poop sample and get results back that will tell you what you are producing high antibodies to and should stop eating. It's faster then the trial and error way.
You may also want to order tex's book that he has written. It's full of great info.
Dana Lee,
I don't know about 'go-juice' with margarita mix but tequila mixes well with it.......lol. That happens to be my drink of choice. Beer and wine always gave me headaches but if I get the "top Shelve" tequila........I love them and they love me. Maybe that's why I love Mexico so much......hhhhhmmmmm!!!! Yea raw fruits and veggies are a bit rough sometimes. I've grown to enjoy a lot more cooked veggies than I ever ate before. Raw fruits I definately avoid unless I peel an apple and eat it. I love fresh fruit and veggies but they don't do much for me. I found that I love frozen banana's(which I learned from this site). Peel them and throw in a ziplock into the freezer......OMG I really enjoy those. There are tons and tons of GF options...............just be diligent with it.
good luck
I was just thinking the same as Cathy....that there are a lot of newbies joining the forum lately. Sorry you got this nasty disease but you will get a tremendous amount of information from this forum. I just joined in August and I have learned so much already....not from the doctor but from being a part of this wonderful group. Luckily, my doctor immediately suspected MC so he ordered biopsies right away. And he did tell me to go Gluten free but that was probably because my bloodwork showed high antibodies for it.
Entocort seems to work for just about everyone it seems. I'm currently doing the Pepto treatment which works wonders for me and has from day 1.
The only advice I can give is to watch out for ingredients in your medicines/supplements. Some contain gluten and I found I had two that contained Dairy.
Good luck and keep us updated!
Terri (I'm from Texas too!)
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Thank you for the replies! I've only been on Entocort a week - it is helping with the big D (and of course, I don't mean Dallas!) My stomach is still rolling around quite a bit. I'm sure it will take time. I know I can't take Entocort forever and I'm worried once I'm off of it I'll go back to hanging out around the bathroom all day.
With that in mind, I will read Tex's book and I do need to start a food diary. I know I have trouble with raw fruits and vegetables and of course salad. Salad turns this ol' gal into a salad shooter. What I'm really having trouble with is coffee. I love one cup in the morning but it doesn't love me. Any suggestions? I used to guzzle diet Coke all day long but after having radiation I can't stand the taste of it anymore.
Dana Lee, I had trouble with coffee too for a while, and I drank green tea. It was so sad for me bc I love my coffee! Turned out the green tea was too high in histamine for me and about 4 months off of coffee was all I needed. Now I try to stay to 1/2 a cup a day and I drink it black! Hope that helps-The caffeine is a natural diuretic, so any caffeine may cause you a problem at the beginning! Susie
Also, please be aware that most non-dairy creamers are non-dairy only in name. Most of them contain casein or some other dairy ingredient, and many of them contain soy — one or both of these could be what causes your adverse reaction to coffee.
Regarding diet drinks, most of us are sensitive to artificial sweeteners, including aspartame.
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.
Caffine is just no good for me. As sad as it is, I had to give it up completely. Herbal tea is all I can do now. I recently tries black tea and it wasn't good :(
My son works out all the time
to the Potty People. Wow, that's great that they were able to find the precancerous polyp and save you from great troubles down the road. But I'm still sorry you have MC. 
My stomach is still rolling around quite a bit. I'm sure it will take time. I know I can't take Entocort forever and I'm worried once I'm off of it I'll go back to hanging out around the bathroom all day. 
What I'm really having trouble with is coffee. I love one cup in the morning but it doesn't love me. Any suggestions? I used to guzzle diet Coke all day long but after having radiation I can't stand the taste of it anymore.
Most of them contain casein or some other dairy ingredient, and many of them contain soy — one or both of these could be what causes your adverse reaction to coffee.