Newly Diagnosed
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Newly Diagnosed
Hi everyone, I received my LC diagnosis almost 2 weeks ago after chronic bouts with diarrhea for over 8 months; although I’ve had GI issues for many years that was wasn’t taken too seriously. Eleven months ago, my mom was diagnosed with terminal stomach cancer and with COVID-19 mixed in, my life was beyond stressed. I’m thinking that likely kicked me into the flare up. I started taking Budesonide 10 days ago and have already noticed an improvement with diarrhea.
I am waiting on a referral to the closest gastroenterologist (3 hrs away) to go through my results and learn more about this disease. In the meantime, I am glad to be here so I can begin my knowledge growth and learn from you - the experts
I am waiting on a referral to the closest gastroenterologist (3 hrs away) to go through my results and learn more about this disease. In the meantime, I am glad to be here so I can begin my knowledge growth and learn from you - the experts
Re: Newly Diagnosed
Hello Michelle,
Welcome to the group. Please don't act surprised if/when your gastroenterologist informs you that diet has nothing to do with this disease, because most of them still haven't accepted that fact at this stage of the game. Published research shows that 85 % of MC patients relapse when a budesonide treatment is ended, but most gastroenteroligists still pretend that they're surprised when that happens. The budesonide will mask your symptoms, temporarily. However, you can maintain remission if you adopt a diet (an elimination diet) that avoids your food sensitivities early on, so that your intestines will have accomplished some healing during the budesonide treatment.
Best of luck to you, during your recovery.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. Please don't act surprised if/when your gastroenterologist informs you that diet has nothing to do with this disease, because most of them still haven't accepted that fact at this stage of the game. Published research shows that 85 % of MC patients relapse when a budesonide treatment is ended, but most gastroenteroligists still pretend that they're surprised when that happens. The budesonide will mask your symptoms, temporarily. However, you can maintain remission if you adopt a diet (an elimination diet) that avoids your food sensitivities early on, so that your intestines will have accomplished some healing during the budesonide treatment.
Best of luck to you, during your recovery.
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.
Re: Newly Diagnosed
Thanks Tex, my fear is that since I am newly diagnosed and have yet to hear from the gastroenterologist that doing an elimination diet may be “putting the cart before the horse”. That being said, I appreciate that many medical professionals may not fully comprehend the complexity of LC. My aim is to fully inform myself and gain as much knowledge as I can!
Re: Newly Diagnosed
I certainly can't fault that position. We're all different. so the more we learn about living with this syndrome, the better we're able to develop a lifestyle that will optimize our personal preferences and our long-term health, and maximize our ability to enjoy the rest of our life, symptom free. If your gastroenterologist is open minded, she or he will prove to be a great asset during your journey to recovery, and your maintenance of remission afterward.
Tex
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.
Re: Newly Diagnosed
Hi Michelle,
Welcome, Do you have a copy of Tex's book? There is a lot of good info there. Our foundation newsletters also have a lot of good info. You can read the foundation newsletters on the foundation website.
Welcome, Do you have a copy of Tex's book? There is a lot of good info there. Our foundation newsletters also have a lot of good info. You can read the foundation newsletters on the foundation website.
Re: Newly Diagnosed
Hi Michelle,
At a bare minimum you want to be free of gluten when you stop taking budesonide. I think Tex posted about 85% of budesonide users reflare within two weeks of stopping budesonide (with no diet change.) We get a lot of members who were on budesonide, it controlled the symptoms, but then MC reflared when stopping budesonide. They find us when they have the uncontrollable D again.
I was on budesonide and it stopped the D pretty quickly.
At a bare minimum you want to be free of gluten when you stop taking budesonide. I think Tex posted about 85% of budesonide users reflare within two weeks of stopping budesonide (with no diet change.) We get a lot of members who were on budesonide, it controlled the symptoms, but then MC reflared when stopping budesonide. They find us when they have the uncontrollable D again.
I was on budesonide and it stopped the D pretty quickly.