new to this forum.........over the MC issues
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new to this forum.........over the MC issues
Hello all......after 3 months of miserable days, nites, work......pretty much all out it......I'm ready to see what all you others have to say. 3 months ago out of the blue......I started with D.......several times a day and urgent I might add too. I started at the docs and they started with antibiotics and steroids thinking I caught a bug. Nope....nothing chgd so several other tests were performed and it was revealed that I have a bad gall bladder. Met with surgeon and he wanted me to see a GI specialist 1st before removal of the gall bladder. I did and those results revealed....Collangenous Colitis. From there my instructions are the 8 pepto tabs a day and food tolerant whatever I could. Well 3 weeks into the pepto tabs and still no relief....I called back and they now said to add Fiber Con tabs as well....also 8 per day. So now 3 weeks of pepto and Fiber Con.....I am still seeing no relief. I dont see doc until 30Aug again before they will chg any regimene or treatment. I've tried gluten free for a week(no chg), I tried low fiber for a week(no chg), I've tried clear liquids(no chg), now trying high fiber(no chg). So.....basically I'm finding this very interesting to read all the different topics and discussions from everyone. I literally do and go nowhere now unless I have to. I stay home close to the potty. I continued to work until Jul26 until I had my last mess at work. I have went on medical leave until Sep 1 and have chosen to retire so I can be close to the potty!!!!! I see that many of you have had to deal with this dibilitating disease a lot longer than I have so I'm appreciating all your input and comments. Thanks all Cathy
Cathy
Cathy, welcome to the forum! 
I was diagnosed with collagenous colitis just over a year ago, so I know how hard it is. I also quit my job ("retired") because of it. Unfortunately, though, most of us don't qualify for social security disability (I tried). Many more will chime in here to help you, but you've started right by stopping gluten. You probably need to quit eating dairy and soy as well. Definitely DO NOT do high fiber! We need low fiber, as low as possible, including avoiding raw veggies and fruits and cooking everything so it's soft and easily digested. Rice is usually safe for us, and non-processed meats. Basically, cut back to a BRAT diet (bananas, rice, applesauce, and gluten-free toast) and maybe tea until you get the D under control, then start trying foods one at a time to see what you react to. Probiotics might help, because they add beneficial bacteria to the digestive system. Don't use the FiberCon (we need less fiber, not more). The first medication that worked for me to stop the D was Questran (cholestyramine resin), which binds the bile from the poorly-functioning gall bladder. Surprisingly, Pepto doesn't help much, but antihistamines like Claritin (loratadine, over the counter) do, because of mast cell involvement in CC. It's possible to control this disease by diet alone, but the meds help us get back on track. Keep your chin up! It will get better.
Pat
I was diagnosed with collagenous colitis just over a year ago, so I know how hard it is. I also quit my job ("retired") because of it. Unfortunately, though, most of us don't qualify for social security disability (I tried). Many more will chime in here to help you, but you've started right by stopping gluten. You probably need to quit eating dairy and soy as well. Definitely DO NOT do high fiber! We need low fiber, as low as possible, including avoiding raw veggies and fruits and cooking everything so it's soft and easily digested. Rice is usually safe for us, and non-processed meats. Basically, cut back to a BRAT diet (bananas, rice, applesauce, and gluten-free toast) and maybe tea until you get the D under control, then start trying foods one at a time to see what you react to. Probiotics might help, because they add beneficial bacteria to the digestive system. Don't use the FiberCon (we need less fiber, not more). The first medication that worked for me to stop the D was Questran (cholestyramine resin), which binds the bile from the poorly-functioning gall bladder. Surprisingly, Pepto doesn't help much, but antihistamines like Claritin (loratadine, over the counter) do, because of mast cell involvement in CC. It's possible to control this disease by diet alone, but the meds help us get back on track. Keep your chin up! It will get better.Pat
Pat C.
"Don't sweat the small stuff.
P.S. (It's all small stuff!)"
"Don't sweat the small stuff.
P.S. (It's all small stuff!)"
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Christine.
- Gentoo Penguin
- Posts: 260
- Joined: Mon Feb 20, 2012 1:15 pm
Cathy
We are all a bit different in what we can tolerate and what we can't. Most people start with chicken, rice, and well cooked carrot, or maybe potato. Broth from the chicken is fine but check the labels for soy or gluten on the commercial broths. Meanwhile, consider testing from Enterolab for food sensitivities or only add one food every few days if you seem better. Most of us can't eat gluten and dairy. Half of us don't eat soy ( very difficult) and some(me included ) can't have eggs. Tomatoes, onion, peppers, salads bother us when we are having problems. Good luck. Everyone here has lots of good info. For you.
Christine
We are all a bit different in what we can tolerate and what we can't. Most people start with chicken, rice, and well cooked carrot, or maybe potato. Broth from the chicken is fine but check the labels for soy or gluten on the commercial broths. Meanwhile, consider testing from Enterolab for food sensitivities or only add one food every few days if you seem better. Most of us can't eat gluten and dairy. Half of us don't eat soy ( very difficult) and some(me included ) can't have eggs. Tomatoes, onion, peppers, salads bother us when we are having problems. Good luck. Everyone here has lots of good info. For you.
Christine
Hi Cathy,
Welcome aboard. Occasionally a new member here will see results within a week or so of starting the gluten-free diet, but for most of us, it takes several months before our gut heals enough for the diet to bring significant improvement or remission. For most of us, it takes 6 months to a year to reach remission by diet changes alone.
The Pepto treatment usually works in roughly two weeks, so if you don't see results pretty soon, it's probably not going to work for you. I agree with Pat and Christine -- most of us are sensitive to gluten and all dairy products, and at least half of us are also sensitive to soy and most legumes. Fiber is definitely contraindicated for collagenous colitis, and it will prevent achieving remission, despite doing everything else right.
Again, welcome aboard and please feel free to ask anything.
Tex
Welcome aboard. Occasionally a new member here will see results within a week or so of starting the gluten-free diet, but for most of us, it takes several months before our gut heals enough for the diet to bring significant improvement or remission. For most of us, it takes 6 months to a year to reach remission by diet changes alone.
The Pepto treatment usually works in roughly two weeks, so if you don't see results pretty soon, it's probably not going to work for you. I agree with Pat and Christine -- most of us are sensitive to gluten and all dairy products, and at least half of us are also sensitive to soy and most legumes. Fiber is definitely contraindicated for collagenous colitis, and it will prevent achieving remission, despite doing everything else right.
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 all for your suggestions and replies. I made a quick trip last nite to pick up some more GF items and will definitely be more specific in watching the GF items to eat. I QUIT taking the fiber pills immediately after I read replies.......everything I read on the internet before suggested low fiber but they told me after 2 weeks of pepto and no results to add the fiber pills. I couldn't verify that anywhere I read and for the last 3 weeks it sure hasn't helped. High hopes I'm sure on my part but since I took no more fiber last nite and this morning.....I haven't experienced any gurgling this morning and no D so far!!!!!!(And BTW....middle of the nite and morning time has always been my worst time frames of episodes) It's the first time I actually have had a positive outlook on this humiliating pain in the rear!!!! 
I hope that when I return to the GI doc on 8/30 I can tell her "WE" figured it out because they haven't helped. I am still taking the pepto for now but hope to see some continued improvements with a more drastic diet chg. Have already lost 60lbs so none of my clothes fit anyway.....might as well go a few more and get on a better eating habits.
I hope that when I return to the GI doc on 8/30 I can tell her "WE" figured it out because they haven't helped. I am still taking the pepto for now but hope to see some continued improvements with a more drastic diet chg. Have already lost 60lbs so none of my clothes fit anyway.....might as well go a few more and get on a better eating habits.Cathy
A few years ago, GI specialists got tired of having to say "I don't have the foggiest idea what's wrong with you", so frequently, so they created a fictitious disease that they called IBS. The theory being that if they can't blame a patient's symptoms on some other disease, then that patient must have "IBS". They figure that it sounds so much more professional to say "You have IBS", than to have to say "I Be Stumped".Cathy wrote:but they told me after 2 weeks of pepto and no results to add the fiber pills.
Most of them have repeated it so often that they are beginning to believe that "IBS" actually exists. To make matters worse, most of them don't understand MC either, so they assume that if the treatment that they prescribe for MC doesn't work, then the patient must have "IBS".Early on, they arbitrarily decided that a primary recommendation for "treating" "IBS" would be additional fiber in the diet (why, no one knows, because there is absolutely no medical research that shows that fiber is beneficial for treating any medical condition). Anyway, that's why your doctor recommended that you add more fiber to your diet -- because like most of her colleagues, she is confused and lost when it comes to treating MC.
It's good to see that you're already seeing some improvement. I hope the trend continues, and you're soon feeling as good as new.
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.
Dear Cathy,
Welcome from Hong Kong and good luck with working out your treatment. Having to give up a job to be "close to the potty!!" (+ fatigue) has, I think, been the experience of quite I few with MC. Then we can get whammed with medical costs on top.
All I can say is that after some time as it says under the PP logo "you can get your life back".
Best wishes for your recovery, ant
Welcome from Hong Kong and good luck with working out your treatment. Having to give up a job to be "close to the potty!!" (+ fatigue) has, I think, been the experience of quite I few with MC. Then we can get whammed with medical costs on top.
All I can say is that after some time as it says under the PP logo "you can get your life back".
Best wishes for your recovery, ant
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"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hello Cathy and welcome to the group. You certainly have received some great advice, fiber is a definite no for most of us. In addition to that gluten certainly affects pretty much everyone here as well as soy. A smaller group have issues with dairy products as well.
Initially once you can elimate gluten and for a while avoid foods with soy in the ingredients, you should start to see some good results within a couple of weeks or so
The reason that the fiber is an issue is that it can be mechanically irritating to the inflamed lining of your GI tract which is now very sensitive to foods that are rough to digest. With that said I would for a while avoid all raw fruits and veggies as they will have the same affect that you had with fiber. Later on you may be able to re-introduce them and see how you do. For now though treat your GI system like you would do for a baby that's just starting to eat solid foods...think about simple well cooked foods that are gluten and soy free. This should get you feeling better soon.
If you are not seeing benefits with the changes in your diet, you can ask your GI doc for some Entocort. Entocort is a steroid that stays mostly in your GI tract and has little in the way of side effects. Hopefully the dietary changes will help forts though.
I hope you feel better soon.
Initially once you can elimate gluten and for a while avoid foods with soy in the ingredients, you should start to see some good results within a couple of weeks or so
The reason that the fiber is an issue is that it can be mechanically irritating to the inflamed lining of your GI tract which is now very sensitive to foods that are rough to digest. With that said I would for a while avoid all raw fruits and veggies as they will have the same affect that you had with fiber. Later on you may be able to re-introduce them and see how you do. For now though treat your GI system like you would do for a baby that's just starting to eat solid foods...think about simple well cooked foods that are gluten and soy free. This should get you feeling better soon.
If you are not seeing benefits with the changes in your diet, you can ask your GI doc for some Entocort. Entocort is a steroid that stays mostly in your GI tract and has little in the way of side effects. Hopefully the dietary changes will help forts though.
I hope you feel better soon.
Joe
Hi Cathy. I think I just answered your raw fruit and veggie question on another post, but I did want to add that if the diet alone doesn't do the trick, some people here use a little immodium instead of pepto. The diet is the best way to deal with this... even though I had to resort to the prescription drug, Entocort ( budesonide) to help me heal. We are all different.
Keep us posted
Leah
Keep us posted
Leah