I have been on this diet for over a year now almost a year and a half. It helps. I have been on Pentasa for almost 3 years and it helps. I started LDN the end of February and it helps but none of this has made me have normans. I can only eat turkey, catfish, peeled very well cooked zucchini,and jasmine rice. I am sick of eating the same thing over and over again!!! I have tried to add in some things and no luck. SO I called my GI doc who has wanted me to take Entocort and I told his nurse that I was willing. She called me back yesterday and said he now wants me to take this new med, Uceris one pill a day, for 8 weeks and he thinks that I will then be in remission. It is budesonide like Entocort but only affects the colon. Of course I will have to still refrain from gluten, casein, and soy but it sounds promising. I took my first pill this morning. I am not going to hold my breath and I fully expect to have to then get on Entocort and hopefully taper it down. I am hopeful. BTW with my insurance it was only $25.00 for 30 pills.
Pat
I give up
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Gabes-Apg
- Emperor Penguin
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Pat
what a bumpy MC ride you ended up with. I hope you get some relief via the meds.
Do you think that mast cell/histamines may be an issue for you?
It is a very common issue for MC'ers (almost like the missing piece of the puzzle)
sadly, not everyone gets 'norman' as their normal. For a year a so, drifting from Constipation to MC Mud was my normal.
I aim for progress, not perfection.
take care
what a bumpy MC ride you ended up with. I hope you get some relief via the meds.
Do you think that mast cell/histamines may be an issue for you?
It is a very common issue for MC'ers (almost like the missing piece of the puzzle)
sadly, not everyone gets 'norman' as their normal. For a year a so, drifting from Constipation to MC Mud was my normal.
I aim for progress, not perfection.
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Pat,
When I first read the title of your post, I was afraid that it meant that you were giving up on the diet.
What a relief to see that it merely meant that you're adding a medication. Believe it or not, I agree with you that trying budesonide may be a good idea. Like you, I'm a bit apprehensive about Uceris though, because so far, most of the members here who have tried it, have not had very good results, IMO. The problem is that the delivery system used for Uceris is designed so that systemic absorption of budesonide will be near zero. In order to do that, the activation has to be delayed until after the pills have cleared the ileum. That suggests that Uceris is probably a good treatment for UC, which always originates at the distal end of the colon (in the rectum).
But that's not an ideal arrangement for treating MC, because MC typically is not only also found in the ileum, but in the most common configuration, MC seems to be more concentrated in the ileum and the proximal colon (the right-side colon) than anywhere else in the colon. IOW, unless I'm confused about the way that the budesonide is delivered, Uceris appears to be designed to provide the least amount of treatment where it is needed the most (for treating MC). But that's because it's designed to treat UC, as I understand it.
My suggestion is that if the Uceris works, fine, but if it doesn't work, don't stop taking it before you start taking conventional budesonide (Entocort), because the first time anyone takes budesonide, they are at a greatly diminished risk of experiencing any loss of bone density. IOW, when a treatment program with budesonide is stopped, and then restarted again, the second re-exposure (and all subsequent re-exposures) impose upon the user, the normal risk of bone density loss that is typically associated with the use of budesonide. This implies that we get sort of a free pass, the first time we use budesonide. So if you're going to switch to traditional Entocort (or a generic version), be sure to begin taking it while there is still a significant amount of budesonide from the Uceris remaining in your system.
That may sound confusing, and your doctor is probably unaware of this, so hopefully this quote from the book will clarify what I'm trying to say here:
3. Schoon, E. J., Bollani, S., Mills, P. R., Israeli, E., Felsenberg, D., Ljunghall, S., . . . Matrix Study Group. (2005). Bone mineral density in relation to efficacy and side effects of budesonide and prednisolone in Crohn's disease. Clinical Gastroenterology and Hepatology, 3(2), 113–121. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/15704045
Theoretically, this may not be necessary, if Uceris actually allows zero systemic absorption, but frankly I would be surprised if it is that precise with it's delivery.
Anyway, good luck with this new venture. Hopefully this is the key that will allow your digestive system to "reset", and remember how it's supposed to perform.
Tex
When I first read the title of your post, I was afraid that it meant that you were giving up on the diet.
What a relief to see that it merely meant that you're adding a medication. Believe it or not, I agree with you that trying budesonide may be a good idea. Like you, I'm a bit apprehensive about Uceris though, because so far, most of the members here who have tried it, have not had very good results, IMO. The problem is that the delivery system used for Uceris is designed so that systemic absorption of budesonide will be near zero. In order to do that, the activation has to be delayed until after the pills have cleared the ileum. That suggests that Uceris is probably a good treatment for UC, which always originates at the distal end of the colon (in the rectum).But that's not an ideal arrangement for treating MC, because MC typically is not only also found in the ileum, but in the most common configuration, MC seems to be more concentrated in the ileum and the proximal colon (the right-side colon) than anywhere else in the colon. IOW, unless I'm confused about the way that the budesonide is delivered, Uceris appears to be designed to provide the least amount of treatment where it is needed the most (for treating MC). But that's because it's designed to treat UC, as I understand it.
My suggestion is that if the Uceris works, fine, but if it doesn't work, don't stop taking it before you start taking conventional budesonide (Entocort), because the first time anyone takes budesonide, they are at a greatly diminished risk of experiencing any loss of bone density. IOW, when a treatment program with budesonide is stopped, and then restarted again, the second re-exposure (and all subsequent re-exposures) impose upon the user, the normal risk of bone density loss that is typically associated with the use of budesonide. This implies that we get sort of a free pass, the first time we use budesonide. So if you're going to switch to traditional Entocort (or a generic version), be sure to begin taking it while there is still a significant amount of budesonide from the Uceris remaining in your system.
That may sound confusing, and your doctor is probably unaware of this, so hopefully this quote from the book will clarify what I'm trying to say here:
Here is reference 3 from that quote (in case your doctor disputes what I'm saying):There is another very good reason why it can be advantageous to continue a treatment regimen with Entocort EC rather than to stop a treatment and subsequently resume it. Research shows that corticosteroid-naive patients suffer significantly less bone density loss (when using budesonide for the first time) than patients who have used a corticosteroid previously, or patients who use prednisone for the first time.3 This implies that discontinuing a treatment with budesonide and restarting it increases the risk of bone density loss. The amount of difference is huge. Schoon et al. (2005) showed that corticosteroid-naive patients taking budesonide average only slightly more than one-fourth of the bone density loss of patients who resume taking budesonide after a prior treatment regimen has been discontinued.
3. Schoon, E. J., Bollani, S., Mills, P. R., Israeli, E., Felsenberg, D., Ljunghall, S., . . . Matrix Study Group. (2005). Bone mineral density in relation to efficacy and side effects of budesonide and prednisolone in Crohn's disease. Clinical Gastroenterology and Hepatology, 3(2), 113–121. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/15704045
Theoretically, this may not be necessary, if Uceris actually allows zero systemic absorption, but frankly I would be surprised if it is that precise with it's delivery.
Anyway, good luck with this new venture. Hopefully this is the key that will allow your digestive system to "reset", and remember how it's supposed to perform.
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 am on Uceris. After WD for 4 months and nothing else worked. I continued the Nortryptiline. It stopped it the very first day I took it. I haven't had to take Imodium or anything else at all. My GI wants me to take it until June 1st, which will be about 3 months, then stop it altogether and I have an apt June 9th to discuss other options.
I am determined to stick to my diet and get this under control while still on Uceris.
I am determined to stick to my diet and get this under control while still on Uceris.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Thanks for the info, Tex. He wants me to come in to see him after 4 weeks to see how I am doing. I will run that by him. Definitely sticking to the diet. I think that is so important but my gut just can't remember. It's been almost 15 years. If you remember I took Entocort several years ago and was GF, DF, and SF but certainly not all the other things I have eliminated from my diet including the most recent discoveries of beef and chicken. It helped but certainly didn't give me normans. I think I must have one of the worst of the worst cases of this dreadful disease and maybe because I have had it so long. He is keeping me on LDN and Pentasa as well.
Nerhume,
I was thinking someone else was on Uceris and it is you! I think I read where this just came out in March. I guess we are the guinea pigs at least for MC. Thanks for chiming in!
Pat
Nerhume,
I was thinking someone else was on Uceris and it is you! I think I read where this just came out in March. I guess we are the guinea pigs at least for MC. Thanks for chiming in!
Pat
I certainly agree. And that's why it's so difficult to get all your ducks in a row. The number of potential triggers is mind-boggling, and most of them have the ability to veto remission, even though everything else might be right.Pat wrote:I think I must have one of the worst of the worst cases of this dreadful disease and maybe because I have had it so long.
But with the extra diet restrictions, and everything that you've learned since that first attempt, I'm optimistic that budesonide has a much better chance of working this time.
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.
Tex, with the risk of bone density loss increased, is there anything one can do counteract potential damage? I've tried to get back into strength training again because I know it's good for the bones but wonder if there's more I could be doing?
Pat, I feel for your situation. It sounds familiar to mine where it seems there isn't one safe thing out there to eat. I don't have any experience with usceris but the worst that can happen is it doesn't work. I've been on varied doses of entocort since February of 2012. Currently I'm taking 3mg entocort every 4-5 days. I've been GF and DF since November 2011 and SF and EF since February 2012. I'm relieved you are not giving up with the diet. I was so frustrated that it took so long to see results and I've had many anger issues over eating the same thing everyday. The anger has subsided and now it just feels that this is the way it is. I am happy that I don't feel like I'm going to throw up every time I eat. I was dx in 2007 am imagine the damage is severe. I let is go untreated for a few years due to frustration with doctors being of no help and didn't realize this forum existed.
One thing I've learned over the years is no matter how hard it is, don't give up because only you know your body. Keep looking for the answer- it may not be "the cure" but even slight improvements in health is a terrific feeling. I agree with Gabes, progress over perfection.
Pat, I feel for your situation. It sounds familiar to mine where it seems there isn't one safe thing out there to eat. I don't have any experience with usceris but the worst that can happen is it doesn't work. I've been on varied doses of entocort since February of 2012. Currently I'm taking 3mg entocort every 4-5 days. I've been GF and DF since November 2011 and SF and EF since February 2012. I'm relieved you are not giving up with the diet. I was so frustrated that it took so long to see results and I've had many anger issues over eating the same thing everyday. The anger has subsided and now it just feels that this is the way it is. I am happy that I don't feel like I'm going to throw up every time I eat. I was dx in 2007 am imagine the damage is severe. I let is go untreated for a few years due to frustration with doctors being of no help and didn't realize this forum existed.
One thing I've learned over the years is no matter how hard it is, don't give up because only you know your body. Keep looking for the answer- it may not be "the cure" but even slight improvements in health is a terrific feeling. I agree with Gabes, progress over perfection.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Hi Deb,
At your low dosage rate, I doubt that you have any reason to be concerned, especially if you're doing load-bearing exercises. Walking, standing, and doing normal chores that involve lifting, should qualify as load-bearing exercises for the purpose of maintaining bone density. And staying active (working hard, playing hard, etc.) provides load-bearing exercise on a regular basis. IOW, IMO most load-bearing exercise doesn't take place in the gym. The most intense load-bearing exercise typically takes place in the gym, though, obviously.
Look at the mathematics involved — your current dosage amounts to only 7.41 % of the normal treatment dose (9 mg per day). The labeled maintenance dose for budesonide is 6 mg per day — your dosage is only 11.11 % of that. Your dosage rate is so low that it may not have any measurable effect on bone density loss risk, even on a long-term basis.
Tex
At your low dosage rate, I doubt that you have any reason to be concerned, especially if you're doing load-bearing exercises. Walking, standing, and doing normal chores that involve lifting, should qualify as load-bearing exercises for the purpose of maintaining bone density. And staying active (working hard, playing hard, etc.) provides load-bearing exercise on a regular basis. IOW, IMO most load-bearing exercise doesn't take place in the gym. The most intense load-bearing exercise typically takes place in the gym, though, obviously.
Look at the mathematics involved — your current dosage amounts to only 7.41 % of the normal treatment dose (9 mg per day). The labeled maintenance dose for budesonide is 6 mg per day — your dosage is only 11.11 % of that. Your dosage rate is so low that it may not have any measurable effect on bone density loss risk, even on a long-term basis.
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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MBombardier
- Rockhopper Penguin
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- Joined: Thu Oct 14, 2010 10:44 am
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