Hello Everyone-
As always, a huge thank you for all I have learned from you here. I so appreciate it and hope you are all making some progress, staying hopeful, and accepting that this is a part of our lives, but not our whole lives. Without this forum, I would not be able to say or do any of that!
After 10 months of giving 110%, cutting out everything, making bone broth weekly, no restaurants, packing special food even for overnight travel, I was still feeling pretty lousy 90% of the time...diarrhea every day one-three times but worse than that was the flu-like symptoms of headache, brain fog, exhaustion, and nausea. I had lost 45 lbs. and my diet consisted of white rice, squash and sw potato, banana, applesauce, olive oil, bone broth, turkey, chicken, grass-fed beef, pork and lamb, and my favorite avocado oil chips. On a good day I would have a small amount of red wine because it didn't seem to make a difference.
At the beginning when first diagnosed, I had filled the prescription for budesonide from the gastro doc. I put it on the shelf and was determined to try healing using all of the info gained here at the site. Several times on really bad days I would take it from the cabinet and almost use it, but then would put it back and start from the beginning with broth and rice only, adding banana, turkey for a week and feel better, only to add applesauce or pork or beef or green beans and be right back at the beginning. I was starving all the time too. i was afraid to make any plans, short or long term, because I felt so lousy and didn't want to keep cancelling.
At the 10 month mark, had all my numbers checked and all was well. I decided that my way wasn't working. I had agonized over the decision to use the steroid for so long, but felt desperate now and tried to view with a different lens. I had read that although many of you healed without it, some of you did indeed use a combination of diet and medication, so I gave myself permission to try it.
Despite my gastro's advice that "now I could eat anything I wanted", I know better from our website, and am sticking to the safe diet.
It has been 10 days and the diarrhea has slowed a whole lot, while the bloat , gas and cramps are hanging on. There has been a nice decrease in nausea, headache, exhaustion so overall I am thrilled with progress compared to how I felt 11 days ago.
My doc recommended 2 months then stop, but from my reading here, I know that tapering might lead to less chance of returning symptoms. If anyone can add anything to the best regimen they've experienced, I would so appreciate it so that I can be prepared, knowing that it is different for each of us. Also, what can I expect to feel like in 20 more days or in 2 months? And what have you found to be the best way to taper?
With gratitude,
lb
budesonide
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
It appears that no one who has used budesonide is willing to offer their comments, so I'll take a stab at it even though I've never used budesonide. Judging from the consensus of opinion from past posts, unless you happen to be one of the few who has any serious side effects from the medication, you should continue to feel better as your symptoms decline, and maybe gain a little weight as your digestion continues to improve.
Most people seem to have the best luck remaining in remission if they taper much slower than their gastroenterologist recommends, spending at least two weeks or more at each step along the way. Anytime you begin to feel the signs of constipation, it's time to step down to the next level. After tapering down to 1 capsule every day, most MC patients find it helpful to go to 1 capsule every other day, 1 every third day, and 1 every fourth day. Some even go on to 1 capsule every fifth and then every sixth day, but you can make the decision about how far and how fast to go by listening to your body and judging by how secure you feel. Everyone's needs seem to be different. Lingering symptoms suggest a slower taper, while bothersome side effects might demand a faster taper.
I hope this helps.
Tex
It appears that no one who has used budesonide is willing to offer their comments, so I'll take a stab at it even though I've never used budesonide. Judging from the consensus of opinion from past posts, unless you happen to be one of the few who has any serious side effects from the medication, you should continue to feel better as your symptoms decline, and maybe gain a little weight as your digestion continues to improve.
Most people seem to have the best luck remaining in remission if they taper much slower than their gastroenterologist recommends, spending at least two weeks or more at each step along the way. Anytime you begin to feel the signs of constipation, it's time to step down to the next level. After tapering down to 1 capsule every day, most MC patients find it helpful to go to 1 capsule every other day, 1 every third day, and 1 every fourth day. Some even go on to 1 capsule every fifth and then every sixth day, but you can make the decision about how far and how fast to go by listening to your body and judging by how secure you feel. Everyone's needs seem to be different. Lingering symptoms suggest a slower taper, while bothersome side effects might demand a faster taper.
I hope this helps.
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,
Just saw your post...
Regarding Budesonide, it has helped me quite a bit and fortunately, with very little to no side effects. I was diagnosed this past spring with CC and after a bit of a set-back on the initial taper, started over with major dietary changes and what seems to have been a 'successful' second taper, thus far.
I started out two months with 9 mg, then two months of 6 mg and then 2 months of 3 mg per day.. and then down to one pill (3 mg) every other day. I've been doing that for nearly one month now. I have so much more energy, no D or stomach pain, occasionally feel a bit 'off' GI-wise (mostly with extra stress and sleep defiicit) but so far, no set-backs or flares.
As mentioned initially, I continue to follow a very clean diet-- no additives or processed foods, protein daily (seafood is what works for me), daily homemade bone broth (amazing), GF, Soy Free, DF, low sugar, very low fiber and low histamine.
I plan to have some food sensitivity testing after my Budesonide taper, at some point, to give me a better understanding of what else I should avoid long-term.
Hope this helps and that you are able to come up with a good plan soon!
Take care~
Just saw your post...
Regarding Budesonide, it has helped me quite a bit and fortunately, with very little to no side effects. I was diagnosed this past spring with CC and after a bit of a set-back on the initial taper, started over with major dietary changes and what seems to have been a 'successful' second taper, thus far.
I started out two months with 9 mg, then two months of 6 mg and then 2 months of 3 mg per day.. and then down to one pill (3 mg) every other day. I've been doing that for nearly one month now. I have so much more energy, no D or stomach pain, occasionally feel a bit 'off' GI-wise (mostly with extra stress and sleep defiicit) but so far, no set-backs or flares.
As mentioned initially, I continue to follow a very clean diet-- no additives or processed foods, protein daily (seafood is what works for me), daily homemade bone broth (amazing), GF, Soy Free, DF, low sugar, very low fiber and low histamine.
I plan to have some food sensitivity testing after my Budesonide taper, at some point, to give me a better understanding of what else I should avoid long-term.
Hope this helps and that you are able to come up with a good plan soon!
Take care~
Jacqueline
I used Budesonide for about a year and a half and it was a life saver for me. I never cheated on it; I just used the time to get my diet in order. I tapered very slowly and when I went off of it, I had no issues at all!
Jari
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
I am in my 25th week of the following budesonide taper:
8 weeks - 3 pills per day
8 weeks - 2 pills
8 weeks - alternating 2 and 1 per day
8 weeks - 1 pill (where I am now)
8 weeks - 1 pill every other day
8 weeks - one pill every third day (where I'll stay forever, if necessary)
I had classical watery diarrhea 5-15 times a day, suddenly beginning on April 13, 2018, and was biopsy diagnosed with LC on June 30. The budesonide was effective in stopping all the diarrhea from the second day, and I have had watery diarrhea only three times in 25 weeks. Other than that, my bowel movements have consistently been formed Bristol Scale # 4's about 80% of the time and 3's or 5's the rest of the time. Gas and cramps are completely gone.
I have no side effects that I'm aware of, and my appetite is much greater than before I began the budesonide. (Unfortunately . . . for me.)
I eat anything I want, though I have stayed completely away from high fiber foods, which are irritants to an inflamed colon, from all caffeine and high lactose foods, which can be diarrhea secretagogues, and from artificial sweeteners, which I had been ingesting in great quantities for decades before my LC began and of which I am now very suspicious.
Unlike many others here, I'm not cynical about current medical protocols for MC, and I don't believe there is any credible medical evidence that MC, strictly defined and by itself, is caused by or properly treated by diet. However, I do believe that there are other, related gastronomical conditions that are caused and treatable by diet, and that people with MC can have one or more of these other conditions in addition to MC. People with such comorbidities would likely benefit from both budesonide and the proper dietary adjustments -- which, however, might for some people be eliminating FODMAPs rather than the usual culprits of gluten, soy and lactose.
My current attitude -- which may change based on future evidence -- is that I'd rather stay on a minimal dose of budesonide forever, if it remains effective, and eat what I want without symptoms, rather than counting molecules of some food group for the rest of my life that may or may not even be the problem.
Obviously, you needn't adopt my current perspectives about dietary matters, but I do encourage you to continue giving budesonide a long taper try, assuming it is helping your MC symptoms without any serious side effects. And continue to be be monitored by a doctor, particularly for steroidal side effects such as bone problems and adrenal fatigue.
8 weeks - 3 pills per day
8 weeks - 2 pills
8 weeks - alternating 2 and 1 per day
8 weeks - 1 pill (where I am now)
8 weeks - 1 pill every other day
8 weeks - one pill every third day (where I'll stay forever, if necessary)
I had classical watery diarrhea 5-15 times a day, suddenly beginning on April 13, 2018, and was biopsy diagnosed with LC on June 30. The budesonide was effective in stopping all the diarrhea from the second day, and I have had watery diarrhea only three times in 25 weeks. Other than that, my bowel movements have consistently been formed Bristol Scale # 4's about 80% of the time and 3's or 5's the rest of the time. Gas and cramps are completely gone.
I have no side effects that I'm aware of, and my appetite is much greater than before I began the budesonide. (Unfortunately . . . for me.)
I eat anything I want, though I have stayed completely away from high fiber foods, which are irritants to an inflamed colon, from all caffeine and high lactose foods, which can be diarrhea secretagogues, and from artificial sweeteners, which I had been ingesting in great quantities for decades before my LC began and of which I am now very suspicious.
Unlike many others here, I'm not cynical about current medical protocols for MC, and I don't believe there is any credible medical evidence that MC, strictly defined and by itself, is caused by or properly treated by diet. However, I do believe that there are other, related gastronomical conditions that are caused and treatable by diet, and that people with MC can have one or more of these other conditions in addition to MC. People with such comorbidities would likely benefit from both budesonide and the proper dietary adjustments -- which, however, might for some people be eliminating FODMAPs rather than the usual culprits of gluten, soy and lactose.
My current attitude -- which may change based on future evidence -- is that I'd rather stay on a minimal dose of budesonide forever, if it remains effective, and eat what I want without symptoms, rather than counting molecules of some food group for the rest of my life that may or may not even be the problem.
Obviously, you needn't adopt my current perspectives about dietary matters, but I do encourage you to continue giving budesonide a long taper try, assuming it is helping your MC symptoms without any serious side effects. And continue to be be monitored by a doctor, particularly for steroidal side effects such as bone problems and adrenal fatigue.
40 week budesonide taper begun on 11 July 2018