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Collagenous colitis
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iehtakw posted:
I have recently been diagnosed with a rare form of colitis and unfortunately there is little info on this, just wondering if anyone else on this board has the same and how they are dealing with it and what meds the doc has them on
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calgal37 responded:
If you google collagenous colitis, lymphocytic colitis or microscopic colitis you should be able to find quite a bit of information on this form of inflammatory bowel disease. In most cases the same meds that are used for other forms of IBD are used for this also. Also check out the use of dietary exclusion - dairy and gluten in some cases - as a help-aid to try to assist treatment.
 
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badhatharry responded:
I was diagnosed with colagenous colitis about a year and a half ago. When first diagnosed found some information on the internet and then found a holistic doctor because I did not want to go on sterioids. I went off gluten and went on pro and pre biotics and had success for about 1 year. However now it is back and I am at a loss as to what to do.
 
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iehtakw replied to badhatharry's response:
  • ty I will try searching again, I am trying the steroids but ackkk I have developed thrush in my esophagus ( sorry for spelling) Before we found out what I was suffering from we tried cutting out gluten but that didnt help at all, I have a feeling my gastro doc does not know much about this which is frustrating for me, for when I complained about the thrush he said that we could cut out the meds and just do the lomitil ( which slows it down some if I take it daily at the max dose). He also has me taking zantac for heartburn and acid reflux..
 
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watermelongirl responded:
Hi ,
I also have just found out that I have collagenous colitis after about a year of diarrhea ..Right now I am trying a gluten free diet, and also I'm trying the Pepto Bismol tablets (2 tablets 4 x a day = 8 total per day for 6 weeks)..I just read some very very encouraging info about Boswellia Serrata extract (400mg 3x a day) which I have ordered and will try as well..Let me know how it goes for you..I've been having a really tough year ..Lot's of Dr.'s and lots of alternatie medicine..
 
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calgal37 replied to watermelongirl's response:
Therapies have been described in small studies. However, the efficacy of the approaches is unproven as of yet. But I thought it might be of interest. The probiotic E. coli strain Nissle was beneficial in a study of 14 patients.

And Boswellia serrata extract (created from resins of the Boswellia serrata tree) improved symptoms but not the tissues of the colon in a pilot controlled trial.

There is some evidence that some of this could be connected with celiac issues, so get checked for that. If gluten-free helps, consider dairy-free as well. Some celiacs cross-react to the major protein in dairy - casein - by producing antibodies, so it's an autoimmune response.
 
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fortmyers replied to calgal37's response:
I was diagnosed 1-1/2 mos. ago w/collagenous colitis. I'd actually had it for 7 months but was afraid to go to a dr. After a colonoscopy they determined this. I was first put on Asacol and due to expense, now on Apriso. Nothing seems to be working. Doctors are lame. Didn't tell me how to replace any of the nutrients I was losing! Researched on line and am taking the high doses of pepto, but I'm become gassy from something. Went to a health food store and got probiotics. Can't tell if anything is working. Thinking about seeking out a holistic dr.
Worse time is after sleeping (or laying down) and waking up immediately usually during the night and immediately when I get up which is my worse time. I'm lactose intolerant and am starting to go gluten free. This is awful. Any other suggestions? Don't know what to eat and can't afford to drop anymore weight.
 
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oldnonie replied to fortmyers's response:
I've had cc for over 25 years - double doses of Immodium stop the diarrhea and then I taper down to only 1 a day or more as needed. Over the years I've had to give up dairy, gluten, raw foods, gassy foods, and most fruits and veggies. I take MVI w/ minerals and other supplements. If you go on a caffeine free clear liquid diet for a couple days and then add one plain bland food a day - like a nice slice of plain roast beef or a baked chicken piece and if it doesn't cause gassy discomfort, keep eating it and try another plain new food-like plain eggs scrambled in margerine - no milk. Keep adding and trying and eliminating. Plain white rice - well cooked and with plain margerine is another suggestion. No wheat - no dairy - no combos - no raw or gassy foods - at least at first - go slow and easy. The diarrhea can only be controlled by the immodium, and the gassy indigestion is tempered by diet.
 
 
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TBeargeon replied to kjme11374's response:
Thanks for posting these links! I was diagnosed in May of this year. I am Celiac as well and have been eating gluten-free for 5 years, but wasn't better so they did a biopsy and found the CC.
 
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pottypal replied to oldnonie's response:
I too have had cc for many, many years and only recently found out the name of the monster that lives in my belly. After years of me wondering what was wrong with me...years of ruining family trips and outings, and feeling guilty for having done it.,, years of discussed looks because someone was impatiently waiting for me, and I could not get away from the bathroom... years of wondering...is it all in my head?. .is it nerves? I finally have an answer. I recently had a colonoscopy. I had some done in the past, but they never checked for this disease. This time they did. I have tried everything...diet changes, fiber, no fiber, no dairy, over the counter medicines, etc., etc. I am now on entrocort. Problem is, I still seem to be having the same trouble. I haven't really noticed any improvement; I still have diarrhea, gas, cramps and stomach pain. I am so depressed and disappointed.


 
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TBeargeon replied to pottypal's response:
I was put on Entocort for about 3 months and it worked like a champ for me, but the moment I stopped taking it I am once again with my gastro issues. So I have decided to see a Naturopath and try to heal myself via very healthy diet lifestyle. I am just now starting this process and am undergoing all sorts of tests. Steroid treatment isn't something that I want to have to rely on for a long period of time. I was taking 3 pills of Entocort in the morning (9mg). Is that your dose? Hang in there!
 
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jackie_Z responded:
I was orginally diagnosed with collagenous colitis 5 years ago, but have been dealing with it for the last 15 years. My last scope stated that it was lymphocitic colitis. The only thing that I know is that there are good days where you are able to forget about how bad it can be. Then days where you remember how bad it can be. Has anyone else noticed if there is a cycle. I seem to have times of the year when I'm sicker. The good news is I'm not constantly sick which is where I was 5 years ago, but the days where I am sick the pain seems to be worse. Maybe it's because you almost get used to the pain. Has anyone else found ways to deal with the pain?
 
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exscot replied to jackie_Z's response:
I was diagnosed about 15 months ago with both lymphocitic and collagenous types. Celiacs has been ruled out but my Dr. advised that this condition DOES make one lactose intolerant. Certainly during flare-ups avoiding all milk products is a big help and they are the first thing I drop if a flare up announces itself. While I get good relief from ASACOL, prednisone was no help at all. The response to drugs is very individualized, as are flare-up triggers. And certainly I haven't found any one to advise on how to replace the nutrition one loses during flares. Whey protein powder mixed into drinks can help - unless you are one of the unlucky celiac sensitives......
 
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pottypal replied to TBeargeon's response:
Yes, I take three pills of 3 MGs each morning. I don't yet know if the doctor will continue me on the Entocort or not after 3 months. He just said he wants me to try it for 3 months. I will be going on Medicare after the 3 months, so I probably won't be able to afford it anyway. They have a generic version now, but it will still throw me in the dreaded "donut-hole". I hope you do get help for a Nautropath. It seems like everyone has a few good days, weeks, or even months...and then it comes back.


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