How to manage microscopic (lymphocytic) colitis?

I have had lymphocytic colitis for 3-4 yrs now. I did well on Budesonide for the past 2.5 yrs but my sugars were going up due to cortisol elevation. this past September I was taken off the budesonide and started on Entyvio infusions. Since then I can't see much improvement. I now have incontinence 3-4x/month and diarrhea 4-6x/day. I was just started on Colestid today so can't really comment on that. But really frustrated that I am unable to find a means of managing this. I am trying my best to make Fodmap work but the dinners are pretty bland as garlic and onions really cause symptoms. any suggestions would be appreciated.

I have had lymphocytic colitis for 3-4 yrs now. I did well on Budesonide for the past 2.5 yrs but my sugars were going up due to cortisol elevation. this past September I was taken off the budesonide and started on Entyvio infusions. Since then I can't see much improvement. I now have incontinence 3-4x/month and diarrhea 4-6x/day. I was just started on Colestid today so can't really comment on that. But really frustrated that I am unable to find a means of managing this. I am trying my best to make Fodmap work but the dinners are pretty bland as garlic and onions really cause symptoms. any suggestions would be appreciated.

@barb1954 from the American Journal of Gastroenterology - VOLUME 120 | SUPPLEMENT | OCTOBER 2025 -
I don't understand all of this, but it sounds like something that has been tried with success to replace Budesonide -

S4994
JAK of All Trades: Upadacitinib-Induced Remission of Medically Refractory Lymphocytic Colitis
Kevin R. O’Connor, MD*, Ryan A. McConnell, MD, Anna Thiemann, MD
Introduction: Microscopic colitis (MC) is an idiopathic, inflammatory colitis that causes chronic
watery diarrhea and adversely impacts quality of life. Remission is defined clinically with the
Hjortswang criteria (mean of ,3 stools/day and ,1 watery stool/day). Most patients respond to
budesonide therapy, although relapse rates are high. Approximately 20% of patients have steroid-
refractory disease. Guidelines recommend thiopurines, anti-tumor necrosis factor agents, and
vedolizumab for budesonide-refractory MC. There is a paucity of data supporting these off-label
advanced therapies, particularly for newer agents, such as the Janus-Kinase (JAK) inhibitors. Here, we
present a case of upadacitinib-induced clinical remission of steroid-refractory lymphocytic colitis
(LC) in a patient with concurrent celiac disease.

@barb1954 So sorry to hear this. I have also been on Bdesonide for about the same time - actually down to 2 pills a day, and maybe try 1 pill a day soon. I eat almost everything - greasy, fresh veg. and spicy in extreme moderation. I just read about cortisol elevation, and I have some of the symptoms - like thin skin and high stress levels - but then I've always had high stress levels. Thank you for making me aware of these symptoms. I really don't have any suggestions - wish I did. Can I ask your age- born in 1954? Then I'm your age as well.

@barb1954 from the American Journal of Gastroenterology - VOLUME 120 | SUPPLEMENT | OCTOBER 2025 -
I don't understand all of this, but it sounds like something that has been tried with success to replace Budesonide -

S4994
JAK of All Trades: Upadacitinib-Induced Remission of Medically Refractory Lymphocytic Colitis
Kevin R. O’Connor, MD*, Ryan A. McConnell, MD, Anna Thiemann, MD
Introduction: Microscopic colitis (MC) is an idiopathic, inflammatory colitis that causes chronic
watery diarrhea and adversely impacts quality of life. Remission is defined clinically with the
Hjortswang criteria (mean of ,3 stools/day and ,1 watery stool/day). Most patients respond to
budesonide therapy, although relapse rates are high. Approximately 20% of patients have steroid-
refractory disease. Guidelines recommend thiopurines, anti-tumor necrosis factor agents, and
vedolizumab for budesonide-refractory MC. There is a paucity of data supporting these off-label
advanced therapies, particularly for newer agents, such as the Janus-Kinase (JAK) inhibitors. Here, we
present a case of upadacitinib-induced clinical remission of steroid-refractory lymphocytic colitis
(LC) in a patient with concurrent celiac disease.

@hoops17 - thanks for sharing this. Would you also please post the link for those who want to read it in detail from the original source?

I know it's auto immune, and my family has quite a list of auto immune issues. I'm the oldest. Our bodies are just wearing out I guess. I hate to say it, but I'm just a bit jealous when I see elderly people riding bike, hiking, shopping at the mall. I also have a bad back - 20 degree curve at the bottom, had a 6 hour surgery in 2017, was good until 2023, then a lot more pain so have a medtronic unit installed with battery pack. Then last spring I had 4 vertebra fractur and had concrete poured in through metal spikes pounded in my back. It's been fun 🙁 I just had surgery in November to remove a section of colon where the diverticulitis had 2 different abscesses. I've been really good for 2 months, and now recovering from influenza A with a 103 temp! Just felt like chatting - sorry. Will keep you in prayers that you have relief from all your issues - so many of us, and my prayer list is getting longer every night.