Lately I can't seem to get my gut to simmer down. All the right food choices don't seem to be doing what they were 2-3 weeks ago when my hormones decided to shift gears.
Yesterday was my birthday so my husband and I went to the movies (I had been wanting to since the end of July) and there was also a very large music festival in town too that looked so much fun to be a part of. Well apparently I'm not ready 'energy wise' to participate in walking around yet, must have gotten overheated because I got light headed too.
My question I pose is my husband really feels that since I am doing a good job eating should I entertain the idea of the budesonide? I apparently can't fix who I am in the way of wanting to do things and trying to make plans for future outings because at this point my husband says we really can't make any plans potentially for at least a couple years at this rate.
I really feel like I am putting life on hold at this point, don't know if I will be able to hold out for two years in this manner. Perhaps if I lived by myself I could make it happen, but life doesn't just stop around here. I have grown kids and our grandkids that visit and some times stay, a husband that would like to do things but feels guilty bringing any ideas up due to knowing I'm not capable of keeping up regardless of what ideas come along.
Since I am eating safe foods but not only seeing minimal difference since May 18th-2015 could my immune system just be in such high overdrive due to my metabolism that I could need some med assistance? I see more yellow (bile) in my Bristol 6-7 lately, would cholestrymine help or a combo of Bud and Chol?? I don't wake at night, I don't have numerous bathroom trips during the day, I just can't get the stools to return to a more 5 state and my energy still isn't as up to par as I keep hoping for. I'm feeling like my gut isn't absorbing nutrients again. I will stop taking the internal Magnesium again (which I thought the Drs Best would be ok actually). I'm trying to listen to my body, I really am. I am only taking my Allegra, VitD3 spray and K2, and spray Mag oil. Do I need even more Magnesium at this point?
I was excited at one point because I remember making a comment about being in a Bristol 5 for a while, not sure what could have changed for me to be at this point, which feels backwards now. I also think I am a naturally stressed person which doesn't help this situation......how do other perfection minded people handle this?
Oh what a bump this is.....thanks for the thoughts.
Erica
Needing a bit of a pick me up....
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Needing a bit of a pick me up....
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Dear Erica,
For what it is worth (and we are all different) at the early stage (call that three years) I would not have been able to survive without the prop of budesonide.
Personally I would say go ahead and use it (if it works) to enable you to live in the way you and your loved ones want. But use it in conjunction with diet changes, that must in the long run be the answer.
Best wishes, ant
For what it is worth (and we are all different) at the early stage (call that three years) I would not have been able to survive without the prop of budesonide.
Personally I would say go ahead and use it (if it works) to enable you to live in the way you and your loved ones want. But use it in conjunction with diet changes, that must in the long run be the answer.
Best wishes, ant
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"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Erica,
Remember that in general, when treating MC, less is more. IOW, supplements might be adding to the problem.
Also, if you happen to be familiar with my theory of immune system hierarchy issues (described in chapter 10 in the book), your recovery appears to have deteriorated consistent with my theory (IOW, at a time in your recovery that fits the theory). That suggests an undiscovered food sensitivity.
And of course bile acid malabsorption would also fit into this hierarchy, if it is present, so that might be an issue to address. (It doesn't cost much to try, and it shouldn't hurt if it doesn't turn out to be the problem).
And I agree with Ant. If your stalled recovery is seriously interfering with your lifestyle, budesonide might help to put the symptoms on hold so that you can get more enjoyment out of life (while the diet changes are hopefully healing your gut). At the very least, the budesonide should postpone having to deal with tracking down any additional food sensitivities until you feel more ready to deal with it.
Good luck with whatever approach you decide to take.
Tex
Remember that in general, when treating MC, less is more. IOW, supplements might be adding to the problem.
Also, if you happen to be familiar with my theory of immune system hierarchy issues (described in chapter 10 in the book), your recovery appears to have deteriorated consistent with my theory (IOW, at a time in your recovery that fits the theory). That suggests an undiscovered food sensitivity.
And of course bile acid malabsorption would also fit into this hierarchy, if it is present, so that might be an issue to address. (It doesn't cost much to try, and it shouldn't hurt if it doesn't turn out to be the problem).
And I agree with Ant. If your stalled recovery is seriously interfering with your lifestyle, budesonide might help to put the symptoms on hold so that you can get more enjoyment out of life (while the diet changes are hopefully healing your gut). At the very least, the budesonide should postpone having to deal with tracking down any additional food sensitivities until you feel more ready to deal with it.
Good luck with whatever approach you decide to take.
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.
Oh me oh my...
Thank you Ant and Tex,
Looks like I have some researching (ch 10) and soul searching to do. Ok, onto the next step and that is backing way up to only 2-3 foods for a few days with no supplements. I hope this next step proves successful and I can get back on track
I really want to be able to do this without meds, it is gonna take more determination on my part. I would much rather find what my body is reacting to than mask it. I suspect if it comes down to it that I am only eating 2-3 foods for any length of time without any positive changes I best decide if it is bam or budesonide time.
Thanks again,
Erica
Thank you Ant and Tex,
Looks like I have some researching (ch 10) and soul searching to do. Ok, onto the next step and that is backing way up to only 2-3 foods for a few days with no supplements. I hope this next step proves successful and I can get back on track
I really want to be able to do this without meds, it is gonna take more determination on my part. I would much rather find what my body is reacting to than mask it. I suspect if it comes down to it that I am only eating 2-3 foods for any length of time without any positive changes I best decide if it is bam or budesonide time.
Thanks again,
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Erica,
If you are interested in trying cholestyramine, I used the research articles from Polly's original post "A new way to look at MC", to talk with my PCP about trying it.
I have been on it now for 3 weeks and doing very well, I have had normans since the second day. Prior to starting the medication I had bms 3-5 x/day, 5-6 on the bristol scale with sporadic episodes of WD. My latest diet changes, 10 weeks before the medication, I was eating only meats, lamb, pork and turkey, over cooked vegetables, fats and bananas. I was still not able to get my symptoms under control.
I have tried all possible diet combinations and medications, but was not able to get long term lasting results. This is the best I have felt in a long time.
If you are interested in trying cholestyramine, I used the research articles from Polly's original post "A new way to look at MC", to talk with my PCP about trying it.
I have been on it now for 3 weeks and doing very well, I have had normans since the second day. Prior to starting the medication I had bms 3-5 x/day, 5-6 on the bristol scale with sporadic episodes of WD. My latest diet changes, 10 weeks before the medication, I was eating only meats, lamb, pork and turkey, over cooked vegetables, fats and bananas. I was still not able to get my symptoms under control.
I have tried all possible diet combinations and medications, but was not able to get long term lasting results. This is the best I have felt in a long time.
Donna
Diagnosed with CC August 2011
Diagnosed with CC August 2011
Erica,
I am taking budesonide, and I don't feel like it masks the symptoms for something that makes me react. I still react if I eat something I shouldn't. For me, it just gave me the "feel better" more quickly that I needed so as not to totally give up. Before diagnosis, I had thought I would be sick for the rest of my life. I do know that it affects people differently, but I still feel those reactions and I think I'm beginning to get a good handle on starting to try to add some things back in slowly. I'm getting really tired of chicken and rice! :) That's a sign I'm feeling better as earlier, I could have cared less!
I am taking budesonide, and I don't feel like it masks the symptoms for something that makes me react. I still react if I eat something I shouldn't. For me, it just gave me the "feel better" more quickly that I needed so as not to totally give up. Before diagnosis, I had thought I would be sick for the rest of my life. I do know that it affects people differently, but I still feel those reactions and I think I'm beginning to get a good handle on starting to try to add some things back in slowly. I'm getting really tired of chicken and rice! :) That's a sign I'm feeling better as earlier, I could have cared less!
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
Hi Erica,
I hear ya! It is so frustrating not to be able to enjoy life with family and friends. I would recommend trying the cholestyramine first, along with Imodium as an extra precaution when needed for going out. If problems still exist, then you can always move to the budenoside. Good luck!
Polly
I hear ya! It is so frustrating not to be able to enjoy life with family and friends. I would recommend trying the cholestyramine first, along with Imodium as an extra precaution when needed for going out. If problems still exist, then you can always move to the budenoside. Good luck!
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Erica, it's definitely a frustrating journey. If you try Cholestyramine, you should know within a week or so if it is helping. I took Budesonide for about 8 months, and didn't notice too much difference until about a month in, though most have results faster. As far as fatigue, unfortunately even if you do get the D under better control, you may be fatigued for a while. I had it for quite a while, well into my time on Budesonide.
Lisa
Lisa
Thank you....Everyone, your comments really help.
With the Cholestryamine what is it .... how do you take it ... and for how long?
Seems like I remember that name back in 2012, is it a powder that is gritty and doesn't go down too well unless it is in some drink, is this the same thing? Has the texture changed at all, and if it is the same stuff, what has worked the best for those taking it?
I take to meds rather well...so if I can't back track my foods and feel better in a few days I will probably need to consider the options.
Slept all night....didn't have urgent WD this morning (but then all I had for dinner was rice and turkey with salt). I have noticed that raising the heart rate up speeds up the metabolism and that is when I start to feel weird with the potential for an urgent bathroom trip. I'll really love it when this phase is healed inside.
Erica
With the Cholestryamine what is it .... how do you take it ... and for how long?
Seems like I remember that name back in 2012, is it a powder that is gritty and doesn't go down too well unless it is in some drink, is this the same thing? Has the texture changed at all, and if it is the same stuff, what has worked the best for those taking it?
I take to meds rather well...so if I can't back track my foods and feel better in a few days I will probably need to consider the options.
Slept all night....didn't have urgent WD this morning (but then all I had for dinner was rice and turkey with salt). I have noticed that raising the heart rate up speeds up the metabolism and that is when I start to feel weird with the potential for an urgent bathroom trip. I'll really love it when this phase is healed inside.
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Erica,
Yes, it is a powder and gritty, I put it in a small jar with about 4 oz of water shake it and drink fast. I add more water to the jar, to get the residue, shake it some more and drink. I am new to taking this so I am not sure how long I will need the medication, it is something you can test by just stopping it.
If you decide to try it, you need to be sure to take any other medications and supplements at a separate time. I try to separate them by at least 4 hours so they are not bound by the cholestyramine.
Yes, it is a powder and gritty, I put it in a small jar with about 4 oz of water shake it and drink fast. I add more water to the jar, to get the residue, shake it some more and drink. I am new to taking this so I am not sure how long I will need the medication, it is something you can test by just stopping it.
If you decide to try it, you need to be sure to take any other medications and supplements at a separate time. I try to separate them by at least 4 hours so they are not bound by the cholestyramine.
Donna
Diagnosed with CC August 2011
Diagnosed with CC August 2011
Erica,
I use the powder like Donna does, but they also have pills that do the same thing. One is cholestipol, which is generic, and the other is Welchol, which is still under patent, so it is much more expensive. (I usually opt for liquid meds if I can - am not a great pill-taker!).
Polly
I use the powder like Donna does, but they also have pills that do the same thing. One is cholestipol, which is generic, and the other is Welchol, which is still under patent, so it is much more expensive. (I usually opt for liquid meds if I can - am not a great pill-taker!).
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I used the cholestryamine when first Dx'd with MC.
Yes - it is the gritty powder. (i used to call it draino!)
given your situation, i would opt for the cholestryamine as first option. you will know in a short period of time if it is working for you or not.
you can start /stop it anytime (dont have to do a taper)
and yes, it is frustrating, disappointing that with all the effort you have done with the diet, that it does not seem 'enough'
I have been on a wellness rollercoaster for over 8 years... a few bad days, it takes all your energy not to give in ...
keep in mind with the diet and lifestyle changes your body is going through mega change chemistry wise.
Yes - it is the gritty powder. (i used to call it draino!)
given your situation, i would opt for the cholestryamine as first option. you will know in a short period of time if it is working for you or not.
you can start /stop it anytime (dont have to do a taper)
and yes, it is frustrating, disappointing that with all the effort you have done with the diet, that it does not seem 'enough'
I have been on a wellness rollercoaster for over 8 years... a few bad days, it takes all your energy not to give in ...
keep in mind with the diet and lifestyle changes your body is going through mega change chemistry wise.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama