Considering Taking Budesonide Again

[Pam V]

Hi All,

I was diagnosed with LC in June, 2017 and prescribed Budesonide, I also did the Enterolab testing and found out that I am allergic to gluten, dairy, soy, and egg. I took the Budesonide from June, 2017 until early 2018 starting with 3/day and slowly tapering off. I have done pretty well since then by managing my diet. From time to time over the years, I would have a flare (sometime I could figure out the trigger, other times it was a mystery) and have managed to bring things back to normal (sometimes very slowly) by eating only very basic safe foods.

Things have not been going well since early November. Some successful periods by eating basic foods which fell apart, followed by 10 day Pepto regime before Thanksgiving which was moderately okay but then fell apart after son's birthday celebration. I am dealing w/a fair amount of stress at work, stress over a condition called Livedo Reticularis (the cause is currently being assessed through blood tests), a small amount of blood in my stool last week after multiple trips to the bathroom... I saw the NP at my GI's office this week as they did not want to schedule a colonoscopy until I had been seen due to the blood in stool. I did get another Rx for Budesonide. I am currently eating only very basic food (bone broth, bananas, white rice, ground turkey, etc.) I have lost about 9 lbs and currently weight 109 lbs. (5'3" tall). Things seemed to get a little better this week on Tuesday and Wednesday (formed but very soft stool) and I ate a little more yesterday as I would love to not lose more weight. In saying that I ate a little more, it was really still a pretty small amount (one banana, two thin rice cakes with a smear of almond butter, about 1 1/2 cups of white rice w/ground turkey for lunch, and 1/4 lb. turkey burger with about 1/2 c of white rice for dinner.

I am wondering what your thoughts are on starting up on Budesonide again. I remember when I first joined the group in 2017 and was learning about Budesonide, there was advice that some people continue to take small doses of Budesonide (one capsule a day or one every other day) on an ongoing basis. I appreciate any advise you all may be able to share.

Thank you,
Pam