Following on from my first post yesterday, I’ve just had my first appointment with my gastroenterologist who wants me to go on a “man made steroid” (her words). The appointment was over the phone due to COVID-19 lockdowns here in Victoria, Australia which made it difficult to really ask questions but the gist of it seems to be she does not believe I can reduce the inflammation from my LC by diet alone so wants me to use this steroid (she didn’t name it but I’m guessing it’s Budesonide based on other posts I’ve seen). I really don’t want to take it unless I absolutely have to. So what I’m wondering is, have people “fixed” their LC without the need for Budesonide? Can I safely ignore her advice and try diet only?
Right now I have been following the Autoimmune Protocol of the Paleo diet for one week. The pain/cramping and bloating have greatly reduced. I still have daily diarrhoea of a very watery consistency and light brown/mustard in colour, although it’s generally only in the morning and then I’m virtually symptom free for the rest of the day/night.
Thoughts???
First appointment with GI since diagnosis
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I've administered this forum for over 15 years, and I've read virtually every post (post count is 202,791 as I write this post). There are many of us who have never taken any medication for our disease. It takes longer to reach remission without budesonide, because it takes a while for the antibodies to calm down after we begin the diet, but as our digestive system begins to heal, the symptoms stop. Most people here start with budesonide because that's what their doctor recommends, but after they discover that the symptoms return 85 % of the time after they end the budesonide treatment, they find us, adopt the diet, and stop their symptoms. In a few cases (probably less than 1 %) patients have to stay on a small maintenance dose of budesonide in addition to the diet, in order to maintain remission. In those cases, a budesonode dose of about one capsule every three days is usually adequate, although a very few find it necessary to take one capsule per day (1/3 of a normal dose) in order to avoid having any symptoms.
Normally, the diet works fine, but you have to be meticulous about you eat — you can't cheat and expect to stay in remission. Personally, I didn't take any meds —I used diet alone, and I've been in remission for over 15 years, now. Many of us have done so, but most people stop posting and ride off into the sunset after they get their lives back.
Tex
Normally, the diet works fine, but you have to be meticulous about you eat — you can't cheat and expect to stay in remission. Personally, I didn't take any meds —I used diet alone, and I've been in remission for over 15 years, now. Many of us have done so, but most people stop posting and ride off into the sunset after they get their lives back.
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.
I used budesonide on my initial flare but I was already in pretty good shape before I started the budesonide. I had found this forum and had already changed my diet. When I started the budesonide I was already getting "soft serve" consistency once a day and no longer had WD. My employer heavily pressed me to go on meds and I caved to pressure from my employer.
I had a reflare about 8 years later. I used diet alone to get into remission the second time.
It will take some time to get into remission.
Big picture you will need to change your diet anyways to get off of budesonide and stay in remission if that makes sense.
We get a lot of new members who take budesonide, don't change their diet, and then relapse after two weeks of their last pill.
Our very own Gabes is Australian and she got into remission without budesonide.
Welcome to the forum! If you don't have Tex's book the link is in the upper right hand corner. It will be the best money ever spent.
I had a reflare about 8 years later. I used diet alone to get into remission the second time.
It will take some time to get into remission.
Big picture you will need to change your diet anyways to get off of budesonide and stay in remission if that makes sense.
We get a lot of new members who take budesonide, don't change their diet, and then relapse after two weeks of their last pill.
Our very own Gabes is Australian and she got into remission without budesonide.
Welcome to the forum! If you don't have Tex's book the link is in the upper right hand corner. It will be the best money ever spent.
This is the success story threads.
They are worth a read.
https://perskyfarms.com/phpBB2/viewforum.php?f=71
They are worth a read.
https://perskyfarms.com/phpBB2/viewforum.php?f=71
Re: First appointment with GI since diagnosis
I really don’t want to take it unless I absolutely have to. So what I’m wondering is, have people “fixed” their LC without the need for Budesonide? Can I safely ignore her advice and try diet only?
Right now I have been following the Autoimmune Protocol of the Paleo diet for one week. The pain/cramping and bloating have greatly reduced. I still have daily diarrhoea of a very watery consistency and light brown/mustard in colour, although it’s generally only in the morning and then I’m virtually symptom free for the rest of the day/night.
Thoughts???
Hi there,
When I was suffering the worst of my symptoms (WD 10-15 times a day), budesonide literally saved my life. It took away my symptoms and helped get me through until the diet changes were able to heal my gut. It really depends on how your symptoms are affecting your life. For me, I would do it again in a heartbeat but your symptoms don't sound as severe as mine were. It really is up to you. For what it's worth, I had no side effects from the budesonide. Good luck to you!
Hi everyone,
I appreciate all of your input. I’ve been thinking a lot about what I’m going to do and I’ve decided to go on the meds as per my doctors instructions. I already have a pretty strict diet and while it has helped, it has not been enough to correct things enough. So I’ll use the meds and work on my diet even more. And hopefully between the two I’ll have more success.
Thanks again,
Sarah
Ps. I have ordered Tex’s book. Hopefully it comes quickly although international mail is taking longer than usual in these COVID times. I’m really looking forward to getting it and learning a lot from it!
I appreciate all of your input. I’ve been thinking a lot about what I’m going to do and I’ve decided to go on the meds as per my doctors instructions. I already have a pretty strict diet and while it has helped, it has not been enough to correct things enough. So I’ll use the meds and work on my diet even more. And hopefully between the two I’ll have more success.
Thanks again,
Sarah
Ps. I have ordered Tex’s book. Hopefully it comes quickly although international mail is taking longer than usual in these COVID times. I’m really looking forward to getting it and learning a lot from it!
Hi Sarah,SKPurcell wrote:Hi everyone,
I appreciate all of your input. I’ve been thinking a lot about what I’m going to do and I’ve decided to go on the meds as per my doctors instructions. I already have a pretty strict diet and while it has helped, it has not been enough to correct things enough. So I’ll use the meds and work on my diet even more. And hopefully between the two I’ll have more success.
Thanks again,
Sarah
Ps. I have ordered Tex’s book. Hopefully it comes quickly although international mail is taking longer than usual in these COVID times. I’m really looking forward to getting it and learning a lot from it!
A lot of us have use meds. The good news is you understand how critical the diet is.
Hello Sarah,
Delivery of printed copies really slowed down at Amazon, but I think they're getting back up to speed lately. Delivery has been much faster from Ingram, during the COVID-19 crisis. I'd be happy to email you a digital copy of the book properly formatted so that it can be read on whatever specific digital device you might have, so that you can get started reading immediately. Just let me know what brand of digital device you use. If you don't use a digital device, I can send it in pdf format so that you can read it on your computer (or your cellphone, if it has adobe acrobat installed).
Just let me know. And let me know whether you prefer the printed version (without any active navigation links), or the digital version (with live navigation links).
Tex
Delivery of printed copies really slowed down at Amazon, but I think they're getting back up to speed lately. Delivery has been much faster from Ingram, during the COVID-19 crisis. I'd be happy to email you a digital copy of the book properly formatted so that it can be read on whatever specific digital device you might have, so that you can get started reading immediately. Just let me know what brand of digital device you use. If you don't use a digital device, I can send it in pdf format so that you can read it on your computer (or your cellphone, if it has adobe acrobat installed).
Just let me know. And let me know whether you prefer the printed version (without any active navigation links), or the digital version (with live navigation links).
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.
Wow Tex, thank you. That’s a really generous offer. I do have a Kindle but I find reading non fiction books a little frustrating on the Kindle for some reason. A PDF would be better for me I think. I have Adobe on my iPad so I could read it on that - I have no idea about version preference so maybe the digital??
Thanks again. I really appreciate everything you’ve been doing for me over the last couple of days.
Sarah
Thanks again. I really appreciate everything you’ve been doing for me over the last couple of days.
Sarah
Hi Sarah,
I've sent it. If you have any problems with it, or prefer a different format, please let me know.
Tex
I've sent it. If you have any problems with it, or prefer a different format, please let me know.
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.