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@kjane322
Do you take Budesonide all the time or when you have a flare up? I have had MC since 2022. I was only initially prescribed Budesonide and weaned and my GI only recommends Budesonide when I have a flare up, I was so thankful to have the Budesonide but because it is a steroid I would not want to take it all the time and my GI doesn’t recommend that Budesonide be taken all the time. Pepto Bismol or Imodium are his recommendations unless they don’t work….. then he says to take Budesonide as directed 3 each morning and wean as you stop having diarrhea. It’s been 3 years and I can’t gain any weight. I lost 50 pounds in 7 months. I eat The Microscopic Colitis foods recommended by Wayne Perskys research and that has improved my MC flare ups….. it is a huge change but I am better ….I just can’t gain weight….plus I am more often than not tired. It was a while before I found the Microscopic Colitis Foundation/ Wayne Persky. I didn’t want to eat as he says we MC’ers should and I didnt. I started having horrible reflux in 2024. Upper endoscopy was only a small hiatal hernia. The reflux turned to vomiting. I then knew I had to eat like Wayne Persky says. The vomiting has almost stopped!! I do fear the feeling of a burp fearing it will be vomit. 4 months now only 3 vomits. I had become daily and I lost more weight. I an skin & bones….age 66.
Teresa Dean
Replies to "@kjane322 Do you take Budesonide all the time or when you have a flare up? I..."
So sorry for everything you've gone through! I am 65 and was diagnosed this year. I have lost 14 pounds and was already skinny. I can't seem to gain any weight. At first people thought I was anorexic which was really annoying. I have a good appetite and eat healthy foods. I had a bad reaction to Ensure a while back and don't want to take that. I was prescribed Budesonide the first time but 9 mg was too much. After the last flare-up they said take 6 mg. and that's doing the trick except for constipation off and on - just not everything in there. I've been reading on this forum about how people go off Budesonide and get a flare up so I'm really concerned that will happen to me too. I do drink kefir everyday which I think is really helpful, but pretty depressed overall.
I was diagnosed with MC last July and I was down to 85 lbs. I honestly thought I was going to die.
I spent several months w/a dietician who helped me navigate foods to help me gain a little weight and get my stools more normal.
I found a functional medicine doc and he's WONDERFUL! He tested my micronutrients in March and we found I was very deficient in many nutrients so he gave me some natural supplements and THAT'S when the weight came on. I was up to 98 lbs last month. One of the things I am taking is cell salts and trace minerals. I've lost a few pounds due to a minor flare, but my stools are now consistently normal and I hope to gain at least another 5 lbs to start. My usual weight before MC was 97 - 100 lbs. Maybe your body is lacking in something and that's why it's not uptaking nutrition. Good luck!
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To teresadean
I’m sure all people are different. That being said, I also know my MC is caused from using ALEVE for many many years twice a day. The reason I know this is because all I have to do is take one ALEVE and the MC is back.
As far as the budesonide is concerned I had such good results it was amazing for me. It stopped the diarrhea almost immediately. I only took it for a month when it was actually prescribed for three months. As I said, we are all different and the chemicals in our bodies are different and going to react differently in every person.
As far as diet goes I limited fiber only. I never gave that Wayne P. Diet a try. My microscopic colitis was short lived as soon as my doctor said it was being caused by constant daily over use of ALEVE. The one and only pain reliever I can take now is Tylenol. It doesn’t work as well but I have to live with that.
I hope you find out what is causing your MC. Pay attention to all medication and pain relievers you take. Microscopic Colitis is caused by inflammation in the colon. So it makes sense that it’s something we are ingesting. But I’m not a doctor so this is just my experience. It certainly can be different for you.