In thinking about documenting the trials and tribulations of my budesonide taper over 10 months, I realized there is no budesonide subforum here. So where should I put such a thread, I think to myself. There's obviously an ingrained belief system here regarding diet and MC, which is reflected in the many subforums on diet, food intolerances, meals, recipes, testing for food allergens, etc.
However, the entire medical establishment that all MC'ers will inevitably encounter is primarily focused on medications. Since the time this forum and its predecessor were established, the dominant first-line protocol for MC in the USA, and probably the entire world, has now become a tapered schedule of budesonide. Therefore, I suggest that there should be a separate forum for something like "Experiences with Budesonide (Entocort and Uceris)".
Being on a 40+ week budesonide taper myself, I have been most interested in the experiences of members here with budesonide -- their successes, failures, frustrations, tears, fears, side effects, and steroidal dances with doctors. However, because budesonide threads are sprinkled all over the place, it's a little tedious trying to hunt and peck for them. I think it would be of service to future readers of this site to allow budesonide discussions to be concentrated in one place.
Suggestion for a Budesonide subforum
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Oops 
I somehow overlooked this post. Sorry about that. You're correct in thinking that this discussion board is heavily slanted toward dietary treatments. That's because it was originally set up almost 14 years ago specifically for that purpose. Compared with other forums, dietary treatment with minimal or no drugs continues to be a novel approach, and there are already plenty of conventional forums out there that dwell exclusively on drug treatments.
If you would like to journal your budesonide tapering, there are a couple of options:
1. Personal Experiences with Medications
2. Journals
Corralling all the budesonide threads can be done readily by a judicious search of the archives.
The point is, we already have so many subforums that it can be mind-numbing to the extent that most people just ignore most of them.
And if I added a subforum every time someone suggested it, we would have about twice as many as we have now.
Tex
I somehow overlooked this post. Sorry about that. You're correct in thinking that this discussion board is heavily slanted toward dietary treatments. That's because it was originally set up almost 14 years ago specifically for that purpose. Compared with other forums, dietary treatment with minimal or no drugs continues to be a novel approach, and there are already plenty of conventional forums out there that dwell exclusively on drug treatments.If you would like to journal your budesonide tapering, there are a couple of options:
1. Personal Experiences with Medications
2. Journals
Corralling all the budesonide threads can be done readily by a judicious search of the archives.
The point is, we already have so many subforums that it can be mind-numbing to the extent that most people just ignore most of them.
And if I added a subforum every time someone suggested it, we would have about twice as many as we have now.
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.
Your call, Tex, obviously.
But now I'm curious about this comment:
But now I'm curious about this comment:
Forums about microscopic colitis? Would you mind identifying one or two, as I haven't found any. (If they're on Facebook, I don't do that.)tex wrote:there are already plenty of conventional forums out there that dwell exclusively on drug treatments
40 week budesonide taper begun on 11 July 2018
https://www.crohnsforum.com/forumdisplay.php?f=258
David who owns the crohnsforum site and is the IT/administrator was diagnosed with MC as a male in his late 20's. (He was always normal and never had crohns.) The MC subsection is pretty much discussions about drugs for MC with the exception of David's very lengthy thread which details how he went into remission using diet.
I believe he has hung out on our site
and got support from us in the past.
David who owns the crohnsforum site and is the IT/administrator was diagnosed with MC as a male in his late 20's. (He was always normal and never had crohns.) The MC subsection is pretty much discussions about drugs for MC with the exception of David's very lengthy thread which details how he went into remission using diet.
I believe he has hung out on our site
and got support from us in the past.Hi Kilt,
Sorry about the misinformation. There used to be plenty of them, and I knew that at least a couple of them had gone belly-up, but I sure wasn't aware that all of the dedicated microscopic colitis discussion boards (except this one) had passed from existence. A search doesn't turn up much.
This might be one, but I didn't want to enter my email address just to find out:
https://www.smartpatients.com/forums/mi ... ic-colitis
This might be sorta a forum:
https://www.patientslikeme.com/conditio ... ic-colitis
But those don't look very promising.
Brandy has the best suggestion.
You're right — most of the other microscopic colitis discussion boards of yesteryear seem to have disappeared.
I can tell you why, but it will sound self-serving. The old boards that I used to be familiar with emphasized the medical route and downplayed dietary treatments (because absolutely no one wants to radically change their diet, and many flat refuse to do so). Those forums were pretty popular at first. But unfortunately not everyone responds as well to budesonide as you seem to have done, especially without any diet changes. And published research shows that about 85 % of MC patients relapse within about 2 months after taking their last capsule. That figure might not be accurate for long tapers — long tapers didn't exist a few years ago, until we popularized that trick. I haven't seen any published research on relapse rates for long tapers.
At any rate, it only takes a year or two of reading post after post about failed treatments before most people get bored, develop a sense of hopelessness, and drop out. They get tired of reading endless complaints. The old saying that misery loves company may not be true.
And there are indeed MC forums on Facebook (I know because I've been asked to answer questions for one in the US and one in England). But I have never had to go there to get the questions, they were always emailed to me. I'm like you — I wouldn't be caught dead on Facebook.
My opinion of budesonide is: If you don't mind taking a steroid, it's a neat way to stop the symptoms of MC while the diet changes are healing your gut. Without certain (permanent) diet changes, for most MC patients budesonide is too iffy to be taken seriously as a long-term treatment. But that's just my opinion.
I keep hoping that the guys in the white coats will prove me wrong one of these days, but so far not much has changed regarding the medical treatment of MC in the 13 years since this discussion board was created. MC was medically described roughly 4 decades ago and they still don't have a single medication labeled for the treatment of MC. Every medical treatment is off-label.
Thanks for pointing out that this is the sole MC discussion board (outside of Facebook) left standing. I had no idea that was the case.
Tex
Sorry about the misinformation. There used to be plenty of them, and I knew that at least a couple of them had gone belly-up, but I sure wasn't aware that all of the dedicated microscopic colitis discussion boards (except this one) had passed from existence. A search doesn't turn up much.
This might be one, but I didn't want to enter my email address just to find out:
https://www.smartpatients.com/forums/mi ... ic-colitis
This might be sorta a forum:
https://www.patientslikeme.com/conditio ... ic-colitis
But those don't look very promising.
Brandy has the best suggestion.
You're right — most of the other microscopic colitis discussion boards of yesteryear seem to have disappeared.
I can tell you why, but it will sound self-serving. The old boards that I used to be familiar with emphasized the medical route and downplayed dietary treatments (because absolutely no one wants to radically change their diet, and many flat refuse to do so). Those forums were pretty popular at first. But unfortunately not everyone responds as well to budesonide as you seem to have done, especially without any diet changes. And published research shows that about 85 % of MC patients relapse within about 2 months after taking their last capsule. That figure might not be accurate for long tapers — long tapers didn't exist a few years ago, until we popularized that trick. I haven't seen any published research on relapse rates for long tapers.
At any rate, it only takes a year or two of reading post after post about failed treatments before most people get bored, develop a sense of hopelessness, and drop out. They get tired of reading endless complaints. The old saying that misery loves company may not be true.
And there are indeed MC forums on Facebook (I know because I've been asked to answer questions for one in the US and one in England). But I have never had to go there to get the questions, they were always emailed to me. I'm like you — I wouldn't be caught dead on Facebook.
My opinion of budesonide is: If you don't mind taking a steroid, it's a neat way to stop the symptoms of MC while the diet changes are healing your gut. Without certain (permanent) diet changes, for most MC patients budesonide is too iffy to be taken seriously as a long-term treatment. But that's just my opinion.
I keep hoping that the guys in the white coats will prove me wrong one of these days, but so far not much has changed regarding the medical treatment of MC in the 13 years since this discussion board was created. MC was medically described roughly 4 decades ago and they still don't have a single medication labeled for the treatment of MC. Every medical treatment is off-label.
Thanks for pointing out that this is the sole MC discussion board (outside of Facebook) left standing. I had no idea that was the case.
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.
Brandy,
Did you know that David tried to buy this forum back in 2012? He made a serious offer, but I didn't have sense enough to accept it.
I was afraid that the concept of treating MC without drugs would eventually get lost in a forum that large.
Tex
Did you know that David tried to buy this forum back in 2012? He made a serious offer, but I didn't have sense enough to accept it.
I was afraid that the concept of treating MC without drugs would eventually get lost in a forum that large.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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Kilt,
Agree with comments above, there is a Facebook group that discuss medication options. My experience with it is that a lot of people want the quick fix /easy fix, and when they find out there isn't one they don't hang around.
With so many variances as to what medication can help, ( one medication that works well for one causes chaos for another) and the limitation of success with the medications without diet, supplement and lifestyle changes means there is no easy solution for life with MC.
Agree with comments above, there is a Facebook group that discuss medication options. My experience with it is that a lot of people want the quick fix /easy fix, and when they find out there isn't one they don't hang around.
With so many variances as to what medication can help, ( one medication that works well for one causes chaos for another) and the limitation of success with the medications without diet, supplement and lifestyle changes means there is no easy solution for life with MC.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama