Hi all. I was diagnosed with collagenous colitis in Feb 2020, been taking Budesodine for almost 3 months. The D has never gone away, but decreased daily. The past 5 days have been horrible. Up all night in the bathroom, and no matter what I eat I usually have D right after I am done. Back to probably 15-20 times in a 24 hour period. I know if I call the GI office, they will just throw another probably very expensive drug at me. Something has to give. I am scared! Does anyone know how to stop a flare? Should I keep taking Imodium? I am dehydrated now! Drinking Core water that has electrolytes. Pediasure has too much sugar, and just makes it worse. Any advice you can give will be so appreciated. Or just tell me it happens and wait it out will give me peace of mind.
Thank you so much,
Jeannie
My first flare - please help!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Jeannie,
Well, yes, it does happen. Some of us have been in a situation such as that for a year or longer.
I'm wondering about the budesonide, itself. As I recall, one of the listed side effects of budesonide is diarrhea. In fact it's listed as a common side effect.
Tex
Well, yes, it does happen. Some of us have been in a situation such as that for a year or longer.
I'm wondering about the budesonide, itself. As I recall, one of the listed side effects of budesonide is diarrhea. In fact it's listed as a common side effect.
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.
Hi Jeannie- I’m sorry you are going through this. Have you made any changes to your diet? Have you considered the Enterolab tests (which honestly will give you better, most useful information as opposed to taking more prescription meds)?
If you are reacting to any foods that you are eating then Budesonide may not be able to overcome that. I took Budesonide for 4 and 1/2 months but was still reacting to soy while taking it. I did much better after taking soy out of my diet. I had already eliminated gluten and dairy.
You’ve probably seen the sections here in the forum for newbies, but if not, there’s a lot of good information there that you may find helpful too.
Best wishes,
Carol
If you are reacting to any foods that you are eating then Budesonide may not be able to overcome that. I took Budesonide for 4 and 1/2 months but was still reacting to soy while taking it. I did much better after taking soy out of my diet. I had already eliminated gluten and dairy.
You’ve probably seen the sections here in the forum for newbies, but if not, there’s a lot of good information there that you may find helpful too.
Best wishes,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
I have collagenous colitis also. Budesonide didn’t help. Have you entertained the cholestyramine idea? I take ALOT OF IT. Didn’t turn around immediately..slow improvement, slow decrease in diarrhea and gurgling. Message me if you want.
Laine
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Like Carol says, a lot of prescription meds will make D worse. If you are on any prescription meds talk to your doctor about possibly getting off of them.carolm wrote:Hi Jeannie- I’m sorry you are going through this. Have you made any changes to your diet? Have you considered the Enterolab tests (which honestly will give you better, most useful information as opposed to taking more prescription meds)?
If you are reacting to any foods that you are eating then Budesonide may not be able to overcome that. I took Budesonide for 4 and 1/2 months but was still reacting to soy while taking it. I did much better after taking soy out of my diet. I had already eliminated gluten and dairy.
You’ve probably seen the sections here in the forum for newbies, but if not, there’s a lot of good information there that you may find helpful too.
Best wishes,
Carol
Tex is also good with what prescription meds are contraindicated with MC.
Do you have a copy of Tex's book? Link is in top right hand corner.
Are you still having explosive WD on budesonide 10-20 x per day? If so budesonide does not appear to be working.
Consider have your doctor try you with cholestyramine.
Diet is very very key to going into remission. Have you started Gabes suggested eating plan? Link is top middle.
Welcome.
https://perskyfarms.com/phpBB2/viewtopic.php?t=22328
Gabes suggested eating plan.
Also, talk to your doctor about getting off of any other prescription meds you are taking.
Discontinue over the counter supplements.
Stick to Gabes eating plan.
Consider try cholestyramine in lieu of budesonide (which does not appear to be working for you.)
If you are on other prescription meds and get off of them the budesonide may work better.
Gabes suggested eating plan.
Also, talk to your doctor about getting off of any other prescription meds you are taking.
Discontinue over the counter supplements.
Stick to Gabes eating plan.
Consider try cholestyramine in lieu of budesonide (which does not appear to be working for you.)
If you are on other prescription meds and get off of them the budesonide may work better.
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dolson
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Hi Jeanne, I know what you're talking about. It's a process of healing and can be lengthy. Diarrhea, abdominal pain, gas, brain fog, extreme fatigue, depression and on and on....
Cholestyramine does help. It will stop some of your excessive bathroom visits. Plus it helps with cholesterol! Good supplement to take. Diet is your best bet. Eat foods that are soft. Limit your sugar intake. Your best bet is to find out what you can't eat by getting your stool sample tested by Enterolab. It's a God-Send! It took me a while to accept this monster, but I have come to terms with it. Cholestryramine is my best tool and bathroom visits are now limited. I feel semi-normal. It's a process that takes time and patience and that was my hard part. I was actually angry...Why, Why, Why, I asked.
You have to take the bull by the horns and find out what making you sick. Once you find out, it will get easier. What one person can eat, another person can't! We all different in nature and that's what makes this disease tricky and difficult at times. Some days are good and some days not so good, but I keep thinking once my gut heals from MC and Celiac Disease, I'll feel better. I avoid carbs like the plague. I am actually getting use to my caveman's diet. I don't miss carbs one iota.
Take care and we do care. You are not alone. Dorothy Rockwell Olson
Cholestyramine does help. It will stop some of your excessive bathroom visits. Plus it helps with cholesterol! Good supplement to take. Diet is your best bet. Eat foods that are soft. Limit your sugar intake. Your best bet is to find out what you can't eat by getting your stool sample tested by Enterolab. It's a God-Send! It took me a while to accept this monster, but I have come to terms with it. Cholestryramine is my best tool and bathroom visits are now limited. I feel semi-normal. It's a process that takes time and patience and that was my hard part. I was actually angry...Why, Why, Why, I asked.
You have to take the bull by the horns and find out what making you sick. Once you find out, it will get easier. What one person can eat, another person can't! We all different in nature and that's what makes this disease tricky and difficult at times. Some days are good and some days not so good, but I keep thinking once my gut heals from MC and Celiac Disease, I'll feel better. I avoid carbs like the plague. I am actually getting use to my caveman's diet. I don't miss carbs one iota.
Take care and we do care. You are not alone. Dorothy Rockwell Olson