Hello, I am so glad I found this forum and all the information available here! I have been reading for the last 10 days or so. I was diagnosed with CC about a year and a half ago. I finally made the appointment after having 8 weeks of ED (explosive diarrhea). After colonoscopy the nurse called to say I have colitis and he was prescribing Lialda. I, of course, went straight to Google and learned there were several kinds of colitis. I had the Dr send me the pathology report so I could see exactly what I have. I didn't look into diet as the Lialda seemed to work, at least for a while. During the past six months I've had off and on flares that have lasted days to weeks and in May I saw my PCP after a long flare. He prescribed Prednisone taper for 3 weeks. It stopped the D after a few days, but in a few weeks it would start up again. Two weeks ago I called the GI doctor and told the nurse the Lialda is not working. The Dr called me in a 40 day taper of Prednisone. I have an appointment with him on Wednesday. I understand from reading here that Budesonide is a better choice than Prednisone. I will ask him to put me on that when I see him.
Before the major flares started I was feeling very good. I have Ankylosing Spondylitis and degenerative disc disease (3 lumbar fusions, 2 cervical fusions) and in November I received a spinal chord stimulator which has given me my life back in regards to back pain. I have been exercising, losing weight and enjoying life. I even signed up for a 12 day tour to Greece! It is in less than 7 weeks. Now these latest flares have me really worried about going. I started the diet a week ago but I feel so tired and weak. I had only been eating rice and oatmeal for several days and only a clear liquid diet for several days prior to that. Now my thoughts are to stay on steroids until after I return from trip and then start the elimination diet. Do those of you on Budesonide stay D free even if you can't stay on diet? Any advice is welcome.
Another Newbie...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
hi there Cherry
welcome
and sympathies for your situation and that you had to find us
answers to your questions;
diet - rice and oatmeal and clear liquid is not the most ideal.
your body needs protein, for energy and for healing the gut.
we have a suggested eating plan in the guidelines to recovery section - did you see this when you were reading posts etc
budesonide and being d free if you cant stay on diet
for some yes, it provides this level of protection, for others no, it is not enough to stop the D when you consume inflammatory ingredients like gluten, dairy, fibre, etc.
given your AS diagnosis - are you taking magnesium? depending on how much reading you have done here, Vit D3 and magnesium are 'the essentials' when it comes to AI issues, IBD issues etc.
again we have information about this in the guidelines to recovery section
both the Vit D3 and magnesium will help with energy issues
http://perskyfarms.com/phpBB2/viewforum.php?f=79
the only other suggestions;
if you want to narrow down your safest foods as quickly as possible, then doing the enterolab testing (A and C panels) will provide vital information to aid in coming up with your best eating plan.
in the mean time, avoiding the major triggers like gluten, dairy and fibre, increasing protein intake will help
active B vitamins - this will help with energy, digestion, the nerve damage from the fusions you have had etc
hope this helps, keep reading, keep asking questions
welcome
and sympathies for your situation and that you had to find us
answers to your questions;
diet - rice and oatmeal and clear liquid is not the most ideal.
your body needs protein, for energy and for healing the gut.
we have a suggested eating plan in the guidelines to recovery section - did you see this when you were reading posts etc
budesonide and being d free if you cant stay on diet
for some yes, it provides this level of protection, for others no, it is not enough to stop the D when you consume inflammatory ingredients like gluten, dairy, fibre, etc.
given your AS diagnosis - are you taking magnesium? depending on how much reading you have done here, Vit D3 and magnesium are 'the essentials' when it comes to AI issues, IBD issues etc.
again we have information about this in the guidelines to recovery section
both the Vit D3 and magnesium will help with energy issues
http://perskyfarms.com/phpBB2/viewforum.php?f=79
the only other suggestions;
if you want to narrow down your safest foods as quickly as possible, then doing the enterolab testing (A and C panels) will provide vital information to aid in coming up with your best eating plan.
in the mean time, avoiding the major triggers like gluten, dairy and fibre, increasing protein intake will help
active B vitamins - this will help with energy, digestion, the nerve damage from the fusions you have had etc
hope this helps, keep reading, keep asking questions
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 Gabes, thanks for your reply. Yes, I have read the diet info and have been following it for about a week. The rice and oatmeal was before I started following the diet. Just saying that probably accounts for my fatigue and weakness. I could not tolerate protein for a couple of weeks. I do take Vit D3 and Magnesium but I'm buying the Doctor's Best brand tomorrow. I don't know how closely I will be able to follow the diet while on the trip but I intend to try. Living in a small town I don't have access to a lot of gluten free products or good sources of meat bones. I am going to a larger city tomorrow and plan to visit a couple of grocery stores to stock up. Any advice on things to buy while there. What is the best oil? Brand of baking flour? Any ideas on high protein snacks I could take on the trip? Thanks for any suggestions.
Oh, one more questions..what should I take for constipation? When the D stops the C begins :(
Oh, one more questions..what should I take for constipation? When the D stops the C begins :(
Hi Cherry,
Welcome to the forum. Gabes has answered your questions, so I'll just throw out the welcome mat and point out that most of us react to oats, unfortunately, despite what the "experts" claim about it being safe for people who are sensitive to gluten. It contains avenin, which is similar to the gluten in wheat.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the forum. Gabes has answered your questions, so I'll just throw out the welcome mat and point out that most of us react to oats, unfortunately, despite what the "experts" claim about it being safe for people who are sensitive to gluten. It contains avenin, which is similar to the gluten in wheat.
Again, welcome aboard, and please feel free to ask anything.
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
best option for C - oral magnesium!
(and the Vit D will help too as it will reduce inflammation)
How much Vit D have you been taking?
other suggestions: increase water intake (plain water, not bubbles, not flavoured etc); increase oil intake;
for the early stages of healing it is best to avoid flour blends / gluten free products.
(a. as they can still contain small amounts of gluten and b. if you react to one or some of the ingredients there is no way to figuring out which ingredients you are reacting to)
There are recipes for paleo muffins that use small amount of coconut flour etc.
best oil - coconut oil is one of the best options
we have a travel section that has posts about what others have done.
http://perskyfarms.com/phpBB2/viewforum.php?f=62
(and the Vit D will help too as it will reduce inflammation)
How much Vit D have you been taking?
other suggestions: increase water intake (plain water, not bubbles, not flavoured etc); increase oil intake;
for the early stages of healing it is best to avoid flour blends / gluten free products.
(a. as they can still contain small amounts of gluten and b. if you react to one or some of the ingredients there is no way to figuring out which ingredients you are reacting to)
There are recipes for paleo muffins that use small amount of coconut flour etc.
best oil - coconut oil is one of the best options
we have a travel section that has posts about what others have done.
http://perskyfarms.com/phpBB2/viewforum.php?f=62
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 Tex, thanks for the warm welcome! I'm in NE Texas and I see you are in Central TX! About the oats, I've never had D after eating them but I suppose that doesn't mean they are not harming me...?
Gabes, I take 2000 IU Vit D and I just upped Mag to 500 but I read on here it is the wrong kind so will get the right one tomorrow. How much would be good? I drink only water, may need to drink more. I will skip the GF products for now and concentrated on good protein and vegetables. I will also try to increase the coconut oil. Do you know if Pea Protein Powder is ok to take?
Thanks so much for taking the time to answer my questions!
Gabes, I take 2000 IU Vit D and I just upped Mag to 500 but I read on here it is the wrong kind so will get the right one tomorrow. How much would be good? I drink only water, may need to drink more. I will skip the GF products for now and concentrated on good protein and vegetables. I will also try to increase the coconut oil. Do you know if Pea Protein Powder is ok to take?
Thanks so much for taking the time to answer my questions!
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
we suggest having up to 5000iu per day of Vit D
have you had your levels checked recently - if they are low you may need more
magnesium - oral magnesium spreading up to 500mg of ELEMENTAL MAGNESIUM (read the fine print on the label to confirm ELemental Magnesium amt per capsule etc) some people need more and find using topical magnesium a good way to top up the daily dosage (with no risk of causing D) Epsom salt foot soak or using topical magnesium oil/spray
if people react to Soy, then it is high risk they will react to pea protein. I have used a rice protein powder in the past but find having animal protein is way better.
when I travelled to france for work I would make sure I had high protein meals. I was staying in self catering apartment so would have high protein breakfast and take pre cooked meats/eggs to have for lunch. Eat out for dinner and choose blandest high protein meal option from the menu.
using the chef cards (suggested wording is in travel section) made it reasonable easy to get safe meals.
don't expect many safe options on planes/airports. I always have BIG high protein meal before travelling and just snack on less than ideal safe ingredients while travelling and drink lots of water and sleep. it doesn't hurt to skip a meal here and there if not eating is better option over having a highly contaminated inflammatory meal!!
have you had your levels checked recently - if they are low you may need more
magnesium - oral magnesium spreading up to 500mg of ELEMENTAL MAGNESIUM (read the fine print on the label to confirm ELemental Magnesium amt per capsule etc) some people need more and find using topical magnesium a good way to top up the daily dosage (with no risk of causing D) Epsom salt foot soak or using topical magnesium oil/spray
if people react to Soy, then it is high risk they will react to pea protein. I have used a rice protein powder in the past but find having animal protein is way better.
when I travelled to france for work I would make sure I had high protein meals. I was staying in self catering apartment so would have high protein breakfast and take pre cooked meats/eggs to have for lunch. Eat out for dinner and choose blandest high protein meal option from the menu.
using the chef cards (suggested wording is in travel section) made it reasonable easy to get safe meals.
don't expect many safe options on planes/airports. I always have BIG high protein meal before travelling and just snack on less than ideal safe ingredients while travelling and drink lots of water and sleep. it doesn't hurt to skip a meal here and there if not eating is better option over having a highly contaminated inflammatory meal!!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I have not had my d levels checked in years. I will increase my dosage and check on the magnesium also. I had better skip the pea protein as I am pretty sure I react to soy. I have looked at the chef cards and plan to print out the cards with my info. The tour group will be staying in several different hotels as well as three nights on a cruise ship. Breakfast and dinner are included at the hotel or on ship. We will stop for lunch somewhere during the day. I hope I can find something on the buffet or ask the chef to cook something safe for me. The noon meal may be more challenging. I hope I can find somethings I can carry with me to eat then.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
just to expand on one of my answers reply
budenside/ predisone etc and protection to 'eat anything'
what I have seen over my time here with the forum (7.5 years) is that;
for 'some people' - I would estimate no more than 20% - that for a period of time up to a few years, that medications can provide 'protection' that they can eat wider scope of foods (gluten dairy, fibre) and not have major symptoms.
When the major symptoms return (and for most they do) the medication has reduced capacity to work, and it takes ALOT of hard work and more time to get resolution of those symptoms
I have seen events/situations like - bacteria infection, major stress event, hormone changes, that are the tipping point of returning to a major flare that medication is not able to resolve.
some of these people have tried other medications and still struggle to get resolution.
for the situation of a short period holiday yes - it has good success of providing good support while away from home
for the long term - it is a false sense of security.
Further -
the other observation we have seen is that medications tend to work better, when the person has good levels of Vit D3 and magnesium (something that you are already addressing)
another thought I had - when you read the travel files or other posts you may have seen things like Gluteneze etc mentioned. these are basically digestive enzymes that help the body digest gluten. these types of products may be beneficial for those times that you can not avoid contamination etc. It doesn't protect you 100% but it does reduce the intensity of inflammation if you do consume gluten or eat somewhere that you know the items have been contaminated with gluten.
budenside/ predisone etc and protection to 'eat anything'
what I have seen over my time here with the forum (7.5 years) is that;
for 'some people' - I would estimate no more than 20% - that for a period of time up to a few years, that medications can provide 'protection' that they can eat wider scope of foods (gluten dairy, fibre) and not have major symptoms.
When the major symptoms return (and for most they do) the medication has reduced capacity to work, and it takes ALOT of hard work and more time to get resolution of those symptoms
I have seen events/situations like - bacteria infection, major stress event, hormone changes, that are the tipping point of returning to a major flare that medication is not able to resolve.
some of these people have tried other medications and still struggle to get resolution.
for the situation of a short period holiday yes - it has good success of providing good support while away from home
for the long term - it is a false sense of security.
Further -
the other observation we have seen is that medications tend to work better, when the person has good levels of Vit D3 and magnesium (something that you are already addressing)
another thought I had - when you read the travel files or other posts you may have seen things like Gluteneze etc mentioned. these are basically digestive enzymes that help the body digest gluten. these types of products may be beneficial for those times that you can not avoid contamination etc. It doesn't protect you 100% but it does reduce the intensity of inflammation if you do consume gluten or eat somewhere that you know the items have been contaminated with gluten.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Cherry,
Oats are a very subtle allergen. The avenin is a weaker antigen than gluten, so it usually takes more or longer to cause a reaction. But if one is sensitive to it, it will help to keep the background fires of inflammation burning so that it doesn't take as much of any other allergen to trigger a reaction.
If you want to avoid problem foods during the cruise, if you will contact the cruise line at least several weeks before the cruise, most of them are very good about accommodating special dietary needs. They have well-trained chefs and they will practically bend over backward to provide delicious meals to meet your requirements, and you will probably be unable to to tell that they are gluten-free, casein-free, soy free, ect.
If for any reason, your doctor won't order a vitamin D test when you want it, you can order a test kit at the following link and do it yourself:
https://vitamindcouncil.zrtlab.com/
Tex
Oats are a very subtle allergen. The avenin is a weaker antigen than gluten, so it usually takes more or longer to cause a reaction. But if one is sensitive to it, it will help to keep the background fires of inflammation burning so that it doesn't take as much of any other allergen to trigger a reaction.
If you want to avoid problem foods during the cruise, if you will contact the cruise line at least several weeks before the cruise, most of them are very good about accommodating special dietary needs. They have well-trained chefs and they will practically bend over backward to provide delicious meals to meet your requirements, and you will probably be unable to to tell that they are gluten-free, casein-free, soy free, ect.
If for any reason, your doctor won't order a vitamin D test when you want it, you can order a test kit at the following link and do it yourself:
https://vitamindcouncil.zrtlab.com/
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.
Gabes, thank you for the added information. I have been out of town all day and just got back to the computer. I bought the spray Vit D and looked for ReMag but didn't find it, will look at Walgreens tomorrow. If they don't have it I will order online. I did go to a larger grocery store that had a lot of speciality items. I selectively picked up a few jerky sticks, bars that only contain apple and banana, and a few snack crackers/chips to test and see if any will be good choices for the trip. The tour group will be spending 8 to 10 hours a day, traveling and walking from site to site. Only 3 nights on cruise ship with full day excursions each day. I will be gone a total of 13 days. I will have to have some protein and snacks to get me through. I will pick up some Gluteneze also. Do they make anything that would help with dairy or egg?
Tex, thank you for the information. I would love to have the lab tests now while gluten is still in my system, but can't afford it at this time.. I will ask my GI doctor Wednesday about a Vit D test.
Thank you both for answering my questions. I'm sure I will have more, but will read, read, read for now.
Cherry
Tex, thank you for the information. I would love to have the lab tests now while gluten is still in my system, but can't afford it at this time.. I will ask my GI doctor Wednesday about a Vit D test.
Thank you both for answering my questions. I'm sure I will have more, but will read, read, read for now.
Cherry
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I think that ReMag is only available from the Dr Dean website.
lots of retailers sell the topical magnesium sprays/oils etc
re digestive enzymes, I don't think there is one that does Dairy totally (I think it does lactose only) and I have not seen one for eggs.
another little hint, cook up some safe meals and freeze them before you go away, so when you get home, if you are not 100% you have safe meals already prepared that you just have to reheat.
lots of retailers sell the topical magnesium sprays/oils etc
re digestive enzymes, I don't think there is one that does Dairy totally (I think it does lactose only) and I have not seen one for eggs.
another little hint, cook up some safe meals and freeze them before you go away, so when you get home, if you are not 100% you have safe meals already prepared that you just have to reheat.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
