Hi and thank you for accepting me into your group. I was diagnosed with collagenous colitis a little over two years ago via colonoscopy and at that time, my GI doc was pretty vague as to diet (just cook your fruits and veggies), and wanted me to go on steroids and I think antibiotics. I was opposed to the meds, thinking I could "cure" myself naturally. Well, I thought I did, little did I know how this condition goes and so for the past two years, I have been in and out of flares. The past four months, I have been in a nasty flare and gave in and went back to the GI doc who again, was vague about diet and gave me samples of Floraset and Uceris and said something about cost of the drug and "you're a smart woman" which I realize now meant figuring out how to get the drug for less...I'm on Medicare and supplement and my copay is $526 !! I have yet to fill the script. I have been following a low residue diet now for two weeks, been taking 2 Immodium 3x a day (per GI doc) and the Floraset. I think I am a bit better, without going into details, just seems things are calming down. My question is are any of you managing this with diet, supplements, no medications? I am on many meds, for other conditions and the thought of going on more, particularly a steroid, doesn't thrill me. Also the cost is really prohibitive. GI doc also could not say how long I'd be on the drug, a few months or for the rest of my life was his answer. Yes, I am looking for another GI doc. All the information I have received up to now has been online and from my sister's daughter in law, who has Crohn's which I realize is not the same, but she has helped me tremendously with nutrition. Thanks so much for sharing anything you can,
Mimi0245
I am new to this group
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Mimi,
Welcome to our Internet family. Yes, many of us are controlling our symptoms by diet changes. Some members here take budesonide (Entocort of Uceris) for a while to help mask the symptoms while their diet changes are healing their gut. Budesonide will help as long in many cases as long as it is used, but most people relapse soon after they stop taking it unless they have made the necessary diet changes before starting the budesonide treatment. I have been in remission for over 11 years now, and I have never taken any medication to treat the disease.
If you want to use budesonide (the active ingredient in Uceris), a good substitute can be ordered from an Indian pharmacy at a small fraction of the cost of your copay for Uceris here in the States, but it is a generic for Entocort, not Uceris, meaning that it is not a time-release formulation. It works as well as Entocort for everyone who uses it, though. However, it is not necessary to take any medications to treat most cases of CC if you are willing to make the necessary diet changes that will stop the inflammation that is being generated by certain foods in your diet. The drugs can mask the symptoms, but the only way to stop the inflammation from being produced is to stop eating the foods that cause our immune system to produce antibodies.
Some of the medications that you are taking may be a problem. Many medications actually trigger CC and if one or more drugs that you are taking is causing your CC, the only way to stop your CC symptoms is to stop taking that drug. In some cases, if that is done promptly, no other intervention is necessary, but after 2 years, you almost surely have developed food sensitivities by now, so your diet will have to be modified, in addition to avoiding any drugs that might trigger CC for you. Drugs that can trigger CC for many people include NSAIDs, antibiotics, PPIs, SSRIs, SNRIs, statins, bisphosphonates, ACE inhibitors, beta blockers, and others. NSAIDs and PPIs are the worst for triggering the disease.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. Yes, many of us are controlling our symptoms by diet changes. Some members here take budesonide (Entocort of Uceris) for a while to help mask the symptoms while their diet changes are healing their gut. Budesonide will help as long in many cases as long as it is used, but most people relapse soon after they stop taking it unless they have made the necessary diet changes before starting the budesonide treatment. I have been in remission for over 11 years now, and I have never taken any medication to treat the disease.
If you want to use budesonide (the active ingredient in Uceris), a good substitute can be ordered from an Indian pharmacy at a small fraction of the cost of your copay for Uceris here in the States, but it is a generic for Entocort, not Uceris, meaning that it is not a time-release formulation. It works as well as Entocort for everyone who uses it, though. However, it is not necessary to take any medications to treat most cases of CC if you are willing to make the necessary diet changes that will stop the inflammation that is being generated by certain foods in your diet. The drugs can mask the symptoms, but the only way to stop the inflammation from being produced is to stop eating the foods that cause our immune system to produce antibodies.
Some of the medications that you are taking may be a problem. Many medications actually trigger CC and if one or more drugs that you are taking is causing your CC, the only way to stop your CC symptoms is to stop taking that drug. In some cases, if that is done promptly, no other intervention is necessary, but after 2 years, you almost surely have developed food sensitivities by now, so your diet will have to be modified, in addition to avoiding any drugs that might trigger CC for you. Drugs that can trigger CC for many people include NSAIDs, antibiotics, PPIs, SSRIs, SNRIs, statins, bisphosphonates, ACE inhibitors, beta blockers, and others. NSAIDs and PPIs are the worst for triggering the disease.
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.