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Hello all..
I stumbled upon this board by way of a post on livestrong.com. I am so glad I did. My daily D started last August and hasn't stopped. Too much dairy always gave me a day or two of D, but that clearly wasn't my continuing problem. The usual blood workup from my doctor showed nothing so I had my first visit to a GI. He sent me for Celiac tests. Not knowing much about Celiac disease, I went researching and was excited. I know the symptoms and accompanying issues with Celiac disease are general and can apply to many other things, but I wondered if my dairy intolerance, early onset osteoporosis, my daughter and grandson's dairy intolerance, another daughter's odd constipation issues and vitamin B deficiency and even my childhood anemia all were related symptoms. I was disappointed when my tests came back negative, but had read enough to know that 1 in 133 people are diagnosed with the disease...meaning so many more can be intolerant.
My February colonoscopy and biopsies finally gave me a diagnosis of CC. I am so happy to finally have a diagnosis (and honestly one that was not scarier) and some idea of how to proceed. After reading so many of the wonderful posts here I am pretty convinced that going GF and DF are my first orders of business. (I have avoided too much dairy for many many years, but small amounts had not seemed to cause any problems...or so I thought.) My GI put me on Asacol 400mg 4x a day. It's been a little over 2 weeks and I am not sure if this is helping or hurting. I am in the bathroom 20 or more times a day, lately with mostly mucus. Is this something positive?
I can not tell you how grateful I am to have stumbled upon this group. Wading through conflicting information was frustrating, to say the least, and just reading has already helped and encouraged me so much. It will help the rest of my family too.
Thank you all for being here.
Welcome to our internet family. It certainly does sound as though your family has a history of food-sensitivity issues. The medical community has a long way to go, to come to grips with gluten-sensitivity, and other food-sensitivity problems. Their diagnostic procedures are still rather archaic, so it's no wonder that the average length of time from the onset of symptoms to a diagnosis of celiac disease is still over 9 years, according to recent research.
It sounds as though you may be having an adverse reaction to the Asacol. If you didn't have mucus before taking it, then the Asacol is just making your symptoms worse, because the intestines produce copious amounts of mucus, whenever they feel the need to protect their inner surface from inflammatory agents in the fecal stream. The inflammatory agent in this case, is apparently the mesalamine in the Asacol.
The primary cause of drug-induced MC is NSAIDs, and the active ingredient in Asacol, (and all mesalamine-based medications), is a derivative of salicylic acid, similar to NSAIDs. That means that the Asacol is causing increased inflammation, not preventing it.
Again, welcome aboard, 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.
Thank you for the information Tex. I was afraid I was reacting to the Asacol, but wasn't sure. I always had mucus, but it just seemed worse. My GI had asked if I had reactions to NSAIDs but since I don't take them, I couldn't say. Tylenol has always worked magic for me.
If nothing else...the little bit of knowledge I have gained through all of this about gluten sensitivity can help my family and others.
Hi, Mary! Welcome to the fam. Lots of good information here. It's a little like drinking from a fire hose, but if you are confused or can't find the answer, please ask.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Welcome from Hong Kong (this is a global family ).
Sounds like you are already taking good decisions now you have some good information from PP on MC. As you obviously have been doing....keep reading....there is more collective knowledge here then anywhere else. And ask anything you like.
Hi Mary and to our family of caring and sharing. So far you are certainly doing things right; eliminating the Asacol and dropping gluten might just be what will make a difference. However, I'm sure you've already read here that patience and diligence are 2 key ingredients in healing. A positive "can do" attitude is also key, and it certainly sounds like you've got that going for you.
Wishing you all the best on your road to recovery, and looking forward to follow along through your posts here.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Hi Mary. I'm so glad you found us . It has been a God send for me with a wealth of info. I think at the beginning, i spent hours and hours reading posts. I am still learning. Since your symptoms are so bad right now, you may want to take out all the foods that could simply be too hard on your system right now (raw fruits and veggies, beans,fiber,tomato products, citrus and citric acid....) It seems daunting at first, but you will truly feel better. After you get off of asacol, you may want to ask your Doc about Entocort. It has worked miracles for me- and fast!. You can't stay on it forever, but you can take it long enough to get things calmed down and healed- especially if you change your diet also.
Good luck
Leah
Hi Mary
I'm only a few months into this lifelong process but I was put on Asacol for 2 months and it did nothing at all. What has given me my life back is gluten, soy, dairy and egg free diet. I wouldn't have had a clue about diet change without this great group of people. I HATE the diet but I'm learning to be creative and there is no way I want to return to my pre-diet life in the potty. Hang in there with diet and maybe meds that work.
Chris
Hello all. Thank you SO much for the very warm welcome and wonderful advice. I too spent hours just reading when I found this forum, and I felt right at home.
I did stop taking the Asacol and tried to stick to mostly chicken, potatoes, cooked veggies, bananas and eggs. Within a day the D settled down and I have only been making 2 or 3 trips to the bathroom in the evening. Unfortunately I was at a convention, faced with buffets of food that made it difficult for the past two days. It was nice to make it through the day not in the bathroom, however, so I am encouraged! I did find two new cookbooks..one GF and one GF, DF, SF and egg free. Tomorrow I start cooking!
It is so nice to have such experienced help pointing me in the right direction. Before my diagnosis I did try various things but stopped if the results were not immediate. Sometimes that was a good thing, since at one point I tried increasing my fiber and whole grains. Now I know which are good options to try and to have the patience to give them a chance to work.
You have definitely put a plan in place for yourself and I can see that you are already getting results. You are a person of action. Asacol, it seems for most of us, does not a darn thing but produce more mucous. There is so much information on our board and so many of us have been here and through it all. Ask away on the questions and we will do our best.
Maggie
Maggie Scarpone
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Resident Birder - I live to bird and enjoy life!
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Hi, Mary! Welcome to the fam. Lots of good information here. It's a little like drinking from a fire hose, but if you are confused or can't find the answer, please ask.
to our family of caring and sharing. So far you are certainly doing things right; eliminating the Asacol and dropping gluten might just be what will make a difference. However, I'm sure you've already read here that patience and diligence are 2 key ingredients in healing. A positive "can do" attitude is also key, and it certainly sounds like you've got that going for you.
