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Hi, I was diagnosed with Collagenous colitis in Dec. 2010. The gastro doctor basically threw out the diagnoses and gave me very little information. He almost acted like it wasn't a big deal and said try staying away from gluten. I have had bouts of stomach distress since (burning under my ribs, belching, burning around my heart, diarrhea, yellow stools, mucus stools ...) I have not been given any medication to treat the condition as yet. I could kick myself, because I honestly didn't realize this condition was what my problem was. I have been gluten free (except when I get accidentally glutened) for some time now. I really feel fine then I will spiral into a bout with all the symptoms seemingly from nowhere. I am so thankful to find this site and information!
I read the following from the welcome page and it has really peeked my interest because I have told the gastro doctor and my primary doctor time and time again that the hormones I was on was what started all my issues and they look at me like I have 10 heads! HRT (hormone replacement therapy) HRT - By all means you should take it if your doc prescribes it. The "no-no" refers mainly to taking it for menopausal symptoms only. We are not sure of the relationship between MC and HRT (whether it has been proven or is just suspected because MC is so common in post-menopausal women who have taken HRT).
What more can anyone tell me about this?
I figured out on my own that Pepto Bismol helped, but I am thrilled to know the dosage! I can't wait to try it!
I just went to the gastro doctor yesterday and he wants me to do stools samples and then he will talk about medicine. Can anyone please educate me on what I should ask for?
Thank you all who know so much more than me and are willing to share info!
Dear Lady--
I am soo sorry that you are having the trouble you are having. I don't know if it would make any difference, but you might want to think about getting another gastroenterologist because yours sounds like he truly does not have a clue as to why you are suffering. Good Lord! All this time and you are just supposed to "try to avoid gluten"??
Everyone reacts to these things differently because we all have different sensitivities. I was on Pepto Bismol for 15 days and went dairy free in addition to gluten free during that time. (I am still eliminating things and trying desperately to get the Enterolabs test done). I was having diarrhea every day from May of last year until January when I stopped dairy and went on the Pepto. Since then, I have had no end of constipation. You can swing back and forth apparently. Neither is fun.
The belching and the pain around the ribs are things I can identify with, along with unrelenting diarrhea for so long I thought it would be my new norm! Now I am wondering if constipation will be my new norm. I am so sorry and I have to say, that when I read about members who have been dealing with this for years and know that they no longer have to deal with this pain, I know that there is light at the end of this tunnel. There really is hope and they keep telling us (new members) that we will get our lives back. I choose to believe it.
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Welcome to our internet family. I have to agree with Jane. It's pretty clear that your gastroenterologist is lost, (as are many, when it comes to treating this disease — that's why we're here, sharing information on what works for us and what doesn't work). As you can see by reading posts here, we are all different, so we each have to fine-tune our own treatment program, in order to get our life back.
ladyathome wrote:What more can anyone tell me about this?
I can tell you that there is precious little information on this topic in the medical literature, but based on the accumulated experience of the members here, we have found that many/most of us cannot use most common oral contraceptives or HRT treatments, because they tend to perpetuate MC symptoms, and prevent remission, despite changing diet and doing everything else correctly. Even the transdermal patches seem to cause the problem for many people who have MC. And this seems to be the case at virtually any age, not just post-menopausal.
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.
Welcome Lady! It seems that there are many things that we put into our bodies can bring on or exacerbate our problems ( hormones, NSAIDS, anti-depressants, antibiotics...etc.). The only way to know if this is the case for you is to go off HRT. Some people get complete remission when they taked out the med..... some don't and need further food detective work.
The four main inflammation foods are gluten, dairy, soy, and eggs. Then there are the foods that are not a good idea when we are in a flare like RAW fruits and veggies, acid foods, fiber foods like beans, tomato and it's products... sometimes coffee and black tea. The "irritant" foods vary widely with each of us and can be slowly tested back in once you have had significant healing.
If you want to and can afford it, check out the Enterolab web site and order the food intolerance tests there. They will give you definitive answers with at least the foods that cause inflammation. If not, then an elimination diet will do the same thing- just slower. I basically lived on meats, cooked veggies, rice, sweet potatoes, Avocado, GF Chex cereals with almond milk, apple sauce. chicken veggie soup, and eggs for almost six months! ( and took a drug called Entocort or Budesonide) until I healed and was down to one BM a day. Then I started testing things back in. Once the inflammation is down, salad and such can be tolerated. I no longer take the drugs and I just had fish tacos for lunch!
It's a tough road, but one that does lead to a happier, healthier gut.
Ask anything and good luck with your journey. We are here for you.
Leah
Thank you everyone for the replies. I can tell this site is going to be my lifeline. I have been obsessed with reading as many of the post and information as I can.
I am interested in getting the Enterolab testing done. Which test should I order that would be the most comprehensive?
Hi Lady,
RE: stool color, I try not to get hung up on that. If I drink red wine, eat a lot of beef, or lots of dark greens, my stool is very dark. If I eat lots of tomatoes or red berries, reddish stool will follow. White wine or lots of light color foods equal lighter stool for me. Seems like a no-brainer. If I had consistently light colored stool, I might stress a little about other issues.
Unlike others here, I (and my GI doc, who has been VERY good in terms of treatment and totally supportive of dietary changes) remain very skeptical of the Enterolab tests. I'm not dismissing other people's faith in them, or their good results after having them, but I don't yet "get" the science behind them. I have to go back and re-read Tex's book on that subject, which I sort of skimmed over, and see what I think. In any case, my personal choice has been to not have the tests and have them tell me I'm sensitive to even more foods, and have to live with an even more restricted diet, when I feel like I'm doing very well by eliminating the "big three" of gluten, dairy and soy.
My GI doc said on my last visit to expect that my LC would flare periodically. I interpreted that to mean that despite meds and my best efforts at diet, stress would rear its head, consistent with Tex's theory. Stress has
definitely been a factor for me.
RE: HRT, I never did it, and I still ended up with LC. I believe stress, NSAIDS, an SSRI, and Chantix, to quit smoking, were the main culprits in my case.
RE: Medicine, I did do a year-plus course of Entocort/budesonide and it helped me a lot, in conjunction with the dietary changes. I now take a maintenance dose of balsalazide and am having very good results. I had no side effects at all from those meds, though others on the board have had different experiences with them.
This board has been a terrific help for me in the two years since my LC diagnosis, and I know you will learn much from the wonderful people here.
I'm one of those who did the 2-month Pepto treatment (actually was 3 months as I chose to wean off slowly the last month) along with giving up Gluten and Dairy and I've been feeling great. I've been off daily Pepto since December 10th....took a few doses over the holidays....and have not taken one Pepto in over a month now. I believe my MC was triggered by my beta blockers and I'm hoping it hasn't triggered other food intolerances as MC tends to do. I avoid gluten 100% as I'm a celiac but did try some dairy and had no reaction....though I don't recommend that as dairy is high inflammatory. I never did the Enterolabs as it's expensive and I can tell what foods I react to which seems to be only gluten and high sugar sweets for now. I have pretty much the same diet as Leah. And now I have added black eyed peas and kidney beans and have no issues. Though I waited some time before testing those irritants! I'm still afraid to eat a salad.
I do hope the Pepto treatment works for you. That along with my diet changes, saved my life. And like Jane, sometimes now I get a little sluggish....totally not used to that....but it's way better than having WD every day.
Keep us updated on your progress. Be sure to check all meds/vitamins for gluten! I've had to change a few of mine.
BTW....I still take birth control pills. I don't seem to have an issue with them but am getting off them before my hysterectomy in June. I do fear having to take HRT in the future but I guess I'll deal with that when the time comes. Others have mentioned other options but can't remember what they were.
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Hi Terri. Sounds like you are almost right where I am with everything. I too sometimes get sluggish. Since you are able to eat beans, I'm guessing you can probably handle the fiber in some salad. I tested it by just having a small one with nothing but oil and vinegar. Soft leaf lettuce is best right now ( red leaf, baby greens). I can now eat a whole big one with protein mixed in for lunch. it makes me so happy to be able to do that again!
PS, I tried tomatoes again (in fish tacos).... nope. Still no good. I had bloating and pain for half a day. I'm afraid I may be completely done with them :(
Hi Suze, I noticed that you mentioned several items that may have contributed to your dx. Quit smoking was the one that stood out. I read research that researchers used a nicotine patch for UC patients with success. It is because the chemicals in tabacco produce particular chemical in the G.I tract that protects them form the UC. Just wondering, I only smoked for two weeks in high school many many moons ago. Jon
@Leah....You graduated to the big salad!! That totally rocks! So happy for you as I know you've been missing your salads. I sure do! I forgot to mention that I had a little bit of Arugula lettuce at a restaurant a few weeks ago and had no issues from it. It just had olive oil on it. I can't wait to graduate to the big salad as well!! Bummer about those tomatoes. I found I can tolerate one tomato slice on my chicken sandwich but two will give me a slight gnawing pain in my stomach (probably because of my little bit of gastritis). But I seem to do well with Prego's spaghetti sauce....go figure. And sometimes I'll get a little heartburn from it and sometimes I won't. Hopefully in time, maybe you will be able to tolerate a little bit of tomato. Keeping my fingers crossed for ya. It's so great to be able to add more foods in isn't it!
Take care,
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
as someone that has had digestion & hormonal issues all my life i can relate. They do affect each other quite a bit.
read the posts, use the search function and ask questions. This is a great group of intelligent and wonderfully caring people who will help you get your back
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thanks Terri. My husband and I went to a Pakistani restaurant tonight after taking a very long hike. I had lamb kabob,some kind of spiced ground beef kabob and rice. I even used the cilantro sauce a bit. No grumblings, no rumblings. I think I'm OK. Tomorrow morning will tell the truth. Love the fact that i can try things out without worrying TOO MUCH. It's good to be on this side of healing :)
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