new to CC
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
new to CC
I was recently diagnosed with CC and am currently on bedosonide and doing great. I am weaning down and I admit I am terrified of a relapse. For years I have suffered and was told I had IBS. 6 years ago I had my first colonoscopy and I wish they would have done a biopsy then because I am most certain they would have found it then. However, my current GI doc thinks my CC was triggered by Zoloft ( I started that in January but have since stopped). I am currently on Cymbalta, but attempts to wean off have not been successful for my mental health. Is anyone else on an antideppresant with CC and doing well? I also was taking a lot of ibuprofen and Prilosec at that time too which likely contributed to the CC. Also my mom has crohns and my grandmother had diverticulitis as well. So I think all those factors contributed to my CC. My doctor thinks that once I stop the Cymbalta I will go into remission and it will never come back but I worry as I have had symptoms for years. I did go gluten and dairy free with some improvement but not enough. I am thinking about trying to omit gluten again but I have actually been going to the bathroom like a normal person which is so lovely. I honestly am used to leaving the house now without making sure I had been to the bathroom a bunch of times, and made sure that there was a bathroom where I was going. I am grateful to find this community and have people to share my story with and get advice from.
Re: new to CC
Hi,
Welcome to the group. According to published medical research, 85 % of MC patients relapse when a budesonide treatment is ended. Apparently your doc doesn't read that medical journal. or otherwise overlooked that article. Most gastroenterologists pretend they're surprised when their prescribed treatment doesn't work (despite that high relapse statistic).
The secret to long-term remission is to change your diet to eliminate all your food sensitivities when you begin the budesonide treatment. Then as you wean off the budesonide, the diet changes will eliminate the inflammation that causes MC in the first place, so you'll be able to stay in remission. And stretch out the weaning process from the budesonide treatment to about twice the length of time that your doctor recommends (IOW, about 5–6 months), by going to one capsule every other day for a couple of weeks, then one every third day, one every fourth day, etc., Some members here go to one every six or seven days. And if you don't feel that the MC is well-controlled, as your weaning period ends, taking an antihistamine first thing every day for a few weeks helps to maintain remission for most patients. Instead of dropping the dose to two, and then one capsule, on a time schedule, if you lower the dose at the first signs of constipation (rather than the calendar), you will be much more likely to maintain remission as you wean off.
And remember that you're almost surely sensitive to a lot of foods, but the budesonide will mask the reactions, so you'll feel great, while you're taking budesonide. About 99.6 % of us are sensitive to gluten, and close to 80 % of us are sensitive to the casein in all dairy products. Over two-thirds of us are sensitive to soy, and almost that many are sensitive to chicken eggs.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. According to published medical research, 85 % of MC patients relapse when a budesonide treatment is ended. Apparently your doc doesn't read that medical journal. or otherwise overlooked that article. Most gastroenterologists pretend they're surprised when their prescribed treatment doesn't work (despite that high relapse statistic).
The secret to long-term remission is to change your diet to eliminate all your food sensitivities when you begin the budesonide treatment. Then as you wean off the budesonide, the diet changes will eliminate the inflammation that causes MC in the first place, so you'll be able to stay in remission. And stretch out the weaning process from the budesonide treatment to about twice the length of time that your doctor recommends (IOW, about 5–6 months), by going to one capsule every other day for a couple of weeks, then one every third day, one every fourth day, etc., Some members here go to one every six or seven days. And if you don't feel that the MC is well-controlled, as your weaning period ends, taking an antihistamine first thing every day for a few weeks helps to maintain remission for most patients. Instead of dropping the dose to two, and then one capsule, on a time schedule, if you lower the dose at the first signs of constipation (rather than the calendar), you will be much more likely to maintain remission as you wean off.
And remember that you're almost surely sensitive to a lot of foods, but the budesonide will mask the reactions, so you'll feel great, while you're taking budesonide. About 99.6 % of us are sensitive to gluten, and close to 80 % of us are sensitive to the casein in all dairy products. Over two-thirds of us are sensitive to soy, and almost that many are sensitive to chicken eggs.
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.