off prednisone for about a week now
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armstrongpilot
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off prednisone for about a week now
I've been off prednisone about a week now...thought I was going to improve. Had a roast this weekend with pork/ red potatoes and over cooked carrots. Had to pay for that for 3 days...now I feel almost like I did before I started the steroids....back to painful guts a mucus again. Back to feeling lost.....this is not going to be any easy road to travel. I hope it goes away!!!!! Basically im eating white rice and lots of meats.... I don't know how long it is until I can heal my guts and adsorb nutrients again.
Hi,
Unfotunately that's a typical reaction to stopping the use of prednisone. I've forgotten — is there a reason why you were taking prednisone rather than budesonide? Budesonide can be safely used for a much, much longer period of time than prednisone.
And have you tried a bile acid sequestrant, such as cholestyramine?
Tex
Unfotunately that's a typical reaction to stopping the use of prednisone. I've forgotten — is there a reason why you were taking prednisone rather than budesonide? Budesonide can be safely used for a much, much longer period of time than prednisone.
And have you tried a bile acid sequestrant, such as cholestyramine?
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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armstrongpilot
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Hi TeX... Thank you for quick reply. The problem with budesonide is the faa will not allow me to fly with it because they haven't studied it enough. They only approve prednisone. Which is dumb. I'm on welchol....is that a bile acid seq??? I'm afraid that this is going to greatly impact my career....and my health.
Damn! That is dumb! Only up to about 20 % of budesonide is absorbed into the bloodstream. That limitation doesn't apply to prednisone, and that's why prednisone can cause so many major systemic problems. There's no logical or medical reason why budesonide is not safer than prednisone for use by pilots or anyone else. That's a real bummer.
And to add insult to injury, prednisone was never proven to be safe for pilots. It is simply a very old drug, so it's uses were "grandfathered" as new regulations became effective. Budesonide got caught up in the regulations, simply because it's a much newer medication, and the drug companies are not willing to spend the money to prove that it is safe for use by pilots
Yes, Welchol is a bile acid sequestrant. I don't see any known allergens in the ingredient list, so there's no reason why it shouldn't work effectively, if bile acid malabsorption is the main reason for your persistent D.
I wish I could think of something else that might be practical to try.
Tex
And to add insult to injury, prednisone was never proven to be safe for pilots. It is simply a very old drug, so it's uses were "grandfathered" as new regulations became effective. Budesonide got caught up in the regulations, simply because it's a much newer medication, and the drug companies are not willing to spend the money to prove that it is safe for use by pilots
Yes, Welchol is a bile acid sequestrant. I don't see any known allergens in the ingredient list, so there's no reason why it shouldn't work effectively, if bile acid malabsorption is the main reason for your persistent D.
I wish I could think of something else that might be practical to try.
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,
For what its worth since you can't keep taking prednisone for a long period of time and without it or Budesonide you run the risk of unwanted bathroom trips, if you don't have any other AI issues at hand a crash course is needed and fast.
1. You can do this...Lots of protein turkey, chicken or lamb (no beef - its too hard on us right now)
2. Make a bone broth soup (Chicken, Cornish Hen - cook them set the meat aside and put the bones back in a crockpot - cook for 6 hours - strain and put broth in a pot on the stove - bring to a light boil and add Gluten Free noodles - while this is cooking peel and cut up some carrots and celery and put them in a bowl with a little water in it and microwave it until soft - add this to your cooking pot - remove from heat put the meat back in the pot and add Sea salt until you like the taste) OK this is going to be your staple food and it is going to work wonders on the gut.
3. push stress away the best you can.
4. Stick to the VitD3 and Topical Magnesium routine - Very Important
5. You don't want to feel hungry, keep a safe potato chip handy. Drink Water, Coconut milk, Almond Milk - stay hydrated but don't water log yourself.
6. Be sure you are staying GF, DF, SoyF and EggF (you'd be amazed the allergens that creep in and destroy all the hard work of healing)
7. Take an antihistamine the one that works best for me is Allegra 180mg (that is allowed if any being a pilot - high histamine in the gut is an awful feeling)
This seems like a lot to consider but these are all the steps I have taken and I saw immediate notice within days of doing this regimen. You'll notice I didn't mention rice much in here....I've noticed I can deal with some but not lots of it, same goes for corn so it is up to you to decide where to draw the line when it comes to your safe foods.
A quick meal I find that is easy and satisfying is The Bone Broth soup (eat it the first day I make it and portion the rest and FREEZE it - want to avoid histamine best as possible here). Next is a cut up red potato and fry it in safe coconut oil, season it with Sea Salt, add some warmed up deli turkey and tada! Even Bacon works....
You have a sense of urgency in your post, I hope you have some time to implement some of this mentioned here. I really feel for those that want to get this under control, but it does take time. I honestly feel the medication would have helped if you had more time to let your body heal, but they wont extend prednisone I'm sure like they do budesonide.
I hope for healing to start very soon for you.
Cheers
Erica
For what its worth since you can't keep taking prednisone for a long period of time and without it or Budesonide you run the risk of unwanted bathroom trips, if you don't have any other AI issues at hand a crash course is needed and fast.
1. You can do this...Lots of protein turkey, chicken or lamb (no beef - its too hard on us right now)
2. Make a bone broth soup (Chicken, Cornish Hen - cook them set the meat aside and put the bones back in a crockpot - cook for 6 hours - strain and put broth in a pot on the stove - bring to a light boil and add Gluten Free noodles - while this is cooking peel and cut up some carrots and celery and put them in a bowl with a little water in it and microwave it until soft - add this to your cooking pot - remove from heat put the meat back in the pot and add Sea salt until you like the taste) OK this is going to be your staple food and it is going to work wonders on the gut.
3. push stress away the best you can.
4. Stick to the VitD3 and Topical Magnesium routine - Very Important
5. You don't want to feel hungry, keep a safe potato chip handy. Drink Water, Coconut milk, Almond Milk - stay hydrated but don't water log yourself.
6. Be sure you are staying GF, DF, SoyF and EggF (you'd be amazed the allergens that creep in and destroy all the hard work of healing)
7. Take an antihistamine the one that works best for me is Allegra 180mg (that is allowed if any being a pilot - high histamine in the gut is an awful feeling)
This seems like a lot to consider but these are all the steps I have taken and I saw immediate notice within days of doing this regimen. You'll notice I didn't mention rice much in here....I've noticed I can deal with some but not lots of it, same goes for corn so it is up to you to decide where to draw the line when it comes to your safe foods.
A quick meal I find that is easy and satisfying is The Bone Broth soup (eat it the first day I make it and portion the rest and FREEZE it - want to avoid histamine best as possible here). Next is a cut up red potato and fry it in safe coconut oil, season it with Sea Salt, add some warmed up deli turkey and tada! Even Bacon works....
You have a sense of urgency in your post, I hope you have some time to implement some of this mentioned here. I really feel for those that want to get this under control, but it does take time. I honestly feel the medication would have helped if you had more time to let your body heal, but they wont extend prednisone I'm sure like they do budesonide.
I hope for healing to start very soon for you.
Cheers
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
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armstrongpilot
- Adélie Penguin
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- Joined: Wed Sep 02, 2015 4:31 pm
thank you for the reply!! there is urgency...I fly for a wonderful company that understands what im going thru and are compassionate...but a pilot that cannot fly is expensive AND useless. The sooner I get back to my new normal the better off I will be...plus im still losing/ unable to gain weight. It seems like i'll have a couple of good days then bam....three or four bad ones in a row....and it seems to take a few days to recover from those.
Avoiding beef? that is my main staple now....maybe that is the problem? im avoiding so much stuff...im running out of things to cut out.
I wonder if Imuran or remicade are good drugs to take...they are approved for flight?
Erica- I will try the things you have listed! I don't think I can have potatoes tho...? not sure...its so hard to tell what is a trigger and what isn't.
tex- thanks for the replies...you are way more help then my doctor could ever aspire to be
Avoiding beef? that is my main staple now....maybe that is the problem? im avoiding so much stuff...im running out of things to cut out.
I wonder if Imuran or remicade are good drugs to take...they are approved for flight?
Erica- I will try the things you have listed! I don't think I can have potatoes tho...? not sure...its so hard to tell what is a trigger and what isn't.
tex- thanks for the replies...you are way more help then my doctor could ever aspire to be
I can't eat carrots, even over cooked right now. Can you use Imodium AD? My brother has used it for years, 2 a day. Just until you can get a handle on it. There is pepto too.
Martha E.
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
Here is a picture of the packages of GF noodles that have been safe for me.... http://www.tinkyada.com/
I would pick something other that beef honestly. I have found Turkey sausage, Turkey sausage crumbles, deli Turkey, Hormel Natural nitrate free bacon, pork chops, chicken cooked in coconut oil all taste good and if you like Game meats give them a try (except those that are smoked or aged like salami types).
I started with Rice....it's ok. I tried Corn....it's a little rough on the gut. I am now trying portions of different types of potato made different ways (steamed, fried in coconut oil, mashed). Your body will let you know which one it will accept in the next few days as long as you are only eating a bland 4-5 item rotated food regimen for the next few days. My bland go to foods are Turkey, Rice or Red potato, Sea salt, Coconut milk, and Cinnamon Rice Chex.
Until we get D under control gaining weight is impossible. It has been 4 months now of changing things up here an there and I have been D free for a good strong 2 or so weeks so I have found my balance finally. Perhaps now I can gain muscle again
This is the part about MC that is frustrating, and stress does us no good it just hampers our efforts.
If you get stuck, reach out as soon as you can and talk about it!
Cheers
Erica
I would pick something other that beef honestly. I have found Turkey sausage, Turkey sausage crumbles, deli Turkey, Hormel Natural nitrate free bacon, pork chops, chicken cooked in coconut oil all taste good and if you like Game meats give them a try (except those that are smoked or aged like salami types).
I started with Rice....it's ok. I tried Corn....it's a little rough on the gut. I am now trying portions of different types of potato made different ways (steamed, fried in coconut oil, mashed). Your body will let you know which one it will accept in the next few days as long as you are only eating a bland 4-5 item rotated food regimen for the next few days. My bland go to foods are Turkey, Rice or Red potato, Sea salt, Coconut milk, and Cinnamon Rice Chex.
Until we get D under control gaining weight is impossible. It has been 4 months now of changing things up here an there and I have been D free for a good strong 2 or so weeks so I have found my balance finally. Perhaps now I can gain muscle again
This is the part about MC that is frustrating, and stress does us no good it just hampers our efforts.
If you get stuck, reach out as soon as you can and talk about it!
Cheers
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
As Erica has suggested, try turkey and/or lamb. Virtually none of us react to either of them. Most wild meats (or farm-raised wild animals) are also very safe, including venison, rabbit, duck, goose, quail, pheasant, antelope, etc. But avoid bison, because virtually all of them carry DNA from domestic cattle these days.armstrongpilot wrote:Avoiding beef? that is my main staple now....maybe that is the problem? im avoiding so much stuff...im running out of things to cut out.
We have several members who have had good success with Imuran, but so far, everyone who has taken the anti-TNF medications such as Remicade (to treat some other AI issue) have been unable to control their MC symptoms, suggesting that the anti-TNF drugs may prevent remission of MC symptoms. Some members have even mentioned that every time they received their infusion of the drug, their D became even worse for at least several days afterward.armstrongpilot wrote:I wonder if Imuran or remicade are good drugs to take...they are approved for flight?
It takes months to slowly work up to the dose of Imuran needed for immune system suppression, and liver enzymes must be checked regularly, but the members here who are using it are satisfied with their control. However, they do still have to continue to avoid their main food sensitivities, especially gluten. I can remember the identity of at least a couple of the members who are using (or who have used) Imuran, and I can provide email addresses if you would like to write them to ask for their personal opinions. There's a chance that they might see this post, but they don't always check in regularly.
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.
Re: off prednisone for about a week now
Hello Armstrongpilot,armstrongpilot wrote:I've been off prednisone about a week now...thought I was going to improve. Had a roast this weekend with pork/ red potatoes and over cooked carrots. Had to pay for that for 3 days...now I feel almost like I did before I started the steroids....back to painful guts a mucus again. Back to feeling lost.....this is not going to be any easy road to travel. I hope it goes away!!!!! Basically im eating white rice and lots of meats.... I don't know how long it is until I can heal my guts and adsorb nutrients again.
I'm sorry that you struggle to improve.
I did also take Prednisone in 2010, and it did nothing for me, actually I got worse.
As soon as I corrected my diet spring 2014, along with Entocort June 2014-June 2015 , I also started taking the active forms of B12, B6 and B9 as Tex had adviced.
I'm convinced that the vitamin B combination gave a solid support to my (slow) healing. I felt more strong, my BMs got more solid and I felt that I could slowly get my life back.
Maybe you should try the vitamin B combination, or if you can get your doctor to give you a prescription of Metanx (which is the three vit B at a certain ratio between them).
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Good Morning, armstrongpilot,
I was wondering if you ordered the Enterolab test? I found it extremely helpful. Initially, I only ordered the A1 panel because I was scared of the result and in denial that I could have more than a few food intolerances. I was shocked when it came back and I tested positive for all four major offenders (November 2014). I started the elimination diet the day after Christmas and felt soooo much better (no more WD, but soft bowel movements within days). I thought it would be relatively easy to figure out what I tolerate and what not on such a limited diet. However, I found it rather difficult. Even with a diet of four or five foods, that's still four or five variables. In the meantime I feel a lot better and the bowel movements are a lot better, but I certainly do not feel like I am in remission (too many symptoms still bothering me). I did the C1 panel of Enterolab this summer and found it again very helpful. I now don't have to wonder anymore whether rice or potatoes would be better, or if I should have tuna, or rather chicken, if I don't feel like lamb. Evidently, many people on this forum have tracked down all their triggers by doing the elimination diet and I give them a lot of credit!!! It is not easy and it takes a very long time. Enterolab definitely made it easier for me to choose the very few foods I eat. Like you, I lost a lot of weight (26 pounds so far). I seem to be able to keep my weight if I only eat lamb, rice, avocados, bananas with lots of pure olive oil on it. However, any new food that I try that results in diarrhea, or any stress that causes me to have diarrhea, or any medical test that causes me to have diarrhea (and somehow my doctors always seem to find one more test), I loose another pound. And for some reason I am not able to put the weight back on. If you decide to go ahead with the Enterolab test, you might want to find out first whether you have an IgA deficiency (simple blood test). The Enterolab test results can be false negative if you have an IgA deficiency. (I did not test for IgA deficiency at the time because I just wanted to order the Enterolab test and not go back to my doctor so he can order me another blood test).
Love,
Patricia
I was wondering if you ordered the Enterolab test? I found it extremely helpful. Initially, I only ordered the A1 panel because I was scared of the result and in denial that I could have more than a few food intolerances. I was shocked when it came back and I tested positive for all four major offenders (November 2014). I started the elimination diet the day after Christmas and felt soooo much better (no more WD, but soft bowel movements within days). I thought it would be relatively easy to figure out what I tolerate and what not on such a limited diet. However, I found it rather difficult. Even with a diet of four or five foods, that's still four or five variables. In the meantime I feel a lot better and the bowel movements are a lot better, but I certainly do not feel like I am in remission (too many symptoms still bothering me). I did the C1 panel of Enterolab this summer and found it again very helpful. I now don't have to wonder anymore whether rice or potatoes would be better, or if I should have tuna, or rather chicken, if I don't feel like lamb. Evidently, many people on this forum have tracked down all their triggers by doing the elimination diet and I give them a lot of credit!!! It is not easy and it takes a very long time. Enterolab definitely made it easier for me to choose the very few foods I eat. Like you, I lost a lot of weight (26 pounds so far). I seem to be able to keep my weight if I only eat lamb, rice, avocados, bananas with lots of pure olive oil on it. However, any new food that I try that results in diarrhea, or any stress that causes me to have diarrhea, or any medical test that causes me to have diarrhea (and somehow my doctors always seem to find one more test), I loose another pound. And for some reason I am not able to put the weight back on. If you decide to go ahead with the Enterolab test, you might want to find out first whether you have an IgA deficiency (simple blood test). The Enterolab test results can be false negative if you have an IgA deficiency. (I did not test for IgA deficiency at the time because I just wanted to order the Enterolab test and not go back to my doctor so he can order me another blood test).
Love,
Patricia
Without the budesonide option, my best bet on a drug would be a bile acid sequestrant. Welchol is the newest generation bile acid binder (colesevelam). I have very good effect of an older bile acid binder (cholestyramine), but had to take close to maximum dose in the beginning. So my best advice would be to upper the Welchol dose to the maximum recommended dose. If that doesn't work, you could try to switch to cholestyramine.
Use of immunosuppressants are considered a last option - and very experimental. I guess you are aware that certain drugs can cause MC? I would be careful with NSAID's and statins.
This article gives an excellent overview over MC (except omission of food issues): http://ac.els-cdn.com/S1873994612002565 ... 9ed5687de3. The article has a treatment algorithm and discusses the basis for the different options.
I hope you soon get this thing under control!
---Tor
Use of immunosuppressants are considered a last option - and very experimental. I guess you are aware that certain drugs can cause MC? I would be careful with NSAID's and statins.
This article gives an excellent overview over MC (except omission of food issues): http://ac.els-cdn.com/S1873994612002565 ... 9ed5687de3. The article has a treatment algorithm and discusses the basis for the different options.
I hope you soon get this thing under control!
---Tor
Life's hard and then you die