Food Survivor

[FoodSurvivor]

I've been on Budesonide for about 6 years on & off. After the first long taper I managed well for a long time. MicroscopicCollageonous Colitis was diagnosed. Mostly when taper finished there is only a week or 2 them cycle starts again. Another colonoscopy was in Jan this year conforming the diagnosis. The procedure upset my bowel. I'm not keen keep sliding up & down. Had chat with my GP y'day & discussed my idea of staying on 3mg backed up with Loperamide when needed. Had Gerd not keen to medicate for that as puts more stress on already osteoporosis condition. Also discussed mi idea of taking Budesonide after some food in stomach. Have always taken it before food. Interested in others' experience thanks. It's the Capsules I take.

[BriarGirl]

My diagnosis also is Collageonous Colitis. I've been on 3mg of Budesonide, in capsule form, for 6 years after starting with 9mg and tapering down to 3mg. My GI has advised me that if I stop, I will have to start all over again with 9mg and that I'm better off to continue with the 3mg. I've never really reached the point that I wanted to stop it but wish I could. I do take it with food. Things aren't perfect but 'usually' manageable and I've learned how to balance my life around it.

[FoodSurvivor in reply to BriarGirl]

Thanks BriarGirl. Encouraging & practical advice! I understand that 3mg & backup with Loperamide & understanding best nutrition is the way forward. Here's to no more yoyoing!

[FoodSurvivor in reply to BriarGirl]

Managing your life around it is a wise tactic. One ongoing challenge is finding clothes & briefs that are comfortable. Mostly because of not needing pressure on gut but also for sensitive skin. Any ideas on this?

[BriarGirl]

Those haven’t been issues for me. Wish I had a suggestion for you.

[FoodSurvivor in reply to BriarGirl]

Thank you for your support. The trial didn't work so back on 6mg Budesonide for 4 weeks then 3mg again. That's the pattern my gastroenterologist prescribes. Hope for stability.

[FoodSurvivor in reply to FoodSurvivor]

Going back to 6mg wasn't working so GP advice to go to 9mg for a week then 6mg 4 weeks then3mg. After that if not stable will refer back to Gastro team. It is a seesaw situation. I note your GI advice to start again from 9mg. I've had this previously. They're trying to find best level for me. Thanks for your input.uch appreciated!

[Sunset203]

I took Budesonide EC 3 MG capsules for 2.5 months after a month of 24/7 diarrhea from colitis. The diarrhea stopped after the 2nd dose. Took 3 capsules by mouth once daily for 6 weeks then 2 capsules once daily for 1 week then 1 capsule once daily for 1 week then 1 capsule every other day for 1 week. Had 40 side effects but worst was insomnia, full body night spasms, weakness, Gerd and emotional problems. After 3 mo. off the meds I'm just beginning to notice the side effects subsiding. Hope it doesn't flare up again. I can't imagine what you must be going through. I guess there comes a point when you have to decide you're stronger than the disease and keep on going and do the best you can. Wish I could be of more help. Just know you're not alone. I also have severe osteoporosis and am about to go on Evenity injections for a year, then Prolia. Scary & expensive stuff.