Tiffany,
When I was recovering, my breakfast looked like all my other meals (usually warmed up leftovers), and I think that's true for many of us. Don't forget hash browns, or just plain fried potatoes (or French fries). Buy frozen French fries though (I used to buy Ore-Ida brand, but there may be others). Don't get them from a fast food restaurant, because most fast food places cook everything in the same oil, so it's contaminated with gluten from breading. A few have dedicated fryers, but when they clean and filter their oil at night, it's all mixed, so it's all cross-contaminated anyway.
Technically, green beans are legumes, but most of us seem to be able to tolerate them anyway, when they're well cooked (and all canned products are precooked). Canned pumpkin might work, as another option.
I never tried any avocados when I was recovering, but they should be safe.
Tex
Help with EnteroLab results
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
https://perskyfarms.com/phpBB2/viewforum.php?f=7
Hi again Tiffany, the link above should take you to the Dee’s kitchen section. Please see my messages in that thread. The recipe is Turkey Sausage with Sage gravy- it’s about the 5th recipe. It’s a very forgiving recipe- you can adjust it suit your taste. I increase the other spices and leave out the crushed red peppers most of the time (but I have reflux issues too). If you decide to make the gravy you don’t need to use almond flour to thicken it. Potato starch works just as well, as would any other starch you can tolerate.
I was in the Hen House store at 87th and Lackman today. They carry a nice selection of BoarsHead meats- prepackaged, as well as the kind they will slice for you (be sure cross contamination isnt an issue). I would think if one Hen House has them, they all would.
Target has the best prices on Earth Balance Soy Free butter and rice based pasta (like Tinkayada (sp?) that I’ve found in the Lenexa and OP area. I’m a big Target fan.
I agree with you that LC is a very isolating condition. It’s autoimmune so it’s not predictable. We don’t look sick so it’s hard for others to understand.
Hope this is helpful. Talk to you soon.
Carol
Hi again Tiffany, the link above should take you to the Dee’s kitchen section. Please see my messages in that thread. The recipe is Turkey Sausage with Sage gravy- it’s about the 5th recipe. It’s a very forgiving recipe- you can adjust it suit your taste. I increase the other spices and leave out the crushed red peppers most of the time (but I have reflux issues too). If you decide to make the gravy you don’t need to use almond flour to thicken it. Potato starch works just as well, as would any other starch you can tolerate.
I was in the Hen House store at 87th and Lackman today. They carry a nice selection of BoarsHead meats- prepackaged, as well as the kind they will slice for you (be sure cross contamination isnt an issue). I would think if one Hen House has them, they all would.
Target has the best prices on Earth Balance Soy Free butter and rice based pasta (like Tinkayada (sp?) that I’ve found in the Lenexa and OP area. I’m a big Target fan.
I agree with you that LC is a very isolating condition. It’s autoimmune so it’s not predictable. We don’t look sick so it’s hard for others to understand.
Hope this is helpful. Talk to you soon.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
It may sound like a broken record but I am very grateful for the support I have already received on this forum. I've eaten lamb for four meals and so far so good. It is actually really good! I'd never had it before and am pleasantly surprised. For the last two days I have had a sweet potato and 1/3 cup applesauce for breakfast, a serving of ground lamb and sweet potato for lunch and a serving of ground lamb and two small sweet potatoes for dinner. I hope to add in hash browns over the weekend and see how that goes so I can have a little more variety for breakfast. Re-heating hash browns for breakfast would work quite well I think, thank you for the suggestion Tex.
I'm assuming it is ok to use coconut oil to cook up the hash browns in the skillet? I read on Gabe's phase 1 post that generally pure olive oil is ok for people in the phase 1 diet, is that accurate? I am going grocery shopping tomorrow so I am trying to get ideas for my list tonight. Also, from other posts and information shared I am correct in that most people use pure coconut milk in the phase 1 diet as well? I found a brand at Whole Foods that does not have any additives or gums/guars; just pure coconut and water. It is the brand Native Forest and is an organic unsweetened coconut milk. If I could try adding that in, that would be awesome as I found a simple "mashed sweet potato" recipe that only calls for cooked sweet potato and coconut milk. As I mentioned I am trying to get some more calories in in a day and as you folks have mentioned; coconut milk would def help with that. Currently I am doing good to get 900-1000 calories in per day.
I also saw Gabe's phase 1 diet post linked Broken Arrow Ranch as a source of game meats. I'd like to try adding venison to my diet but wasn't sure if anyone here had every ordered from them before? I guess I am asking if they are allergy safe. After the whole realization that soy is in almost all turkey products, I want to make sure I'm setting myself up for hidden ingredients in their meat options.
Also, I found these pure coconut wraps on Amazon. The only ingredients are Organic Coconut Meat, Organic Coconut Water & Organic Coconut Extra Virgin Coconut Oil. Would these be ok on phase 1? I was thinking maybe they would be if the coconut milk is ok. It would be nice to have a wrap for my ground lamb at dinner. If not and I need to wait until I've healed more, I understand; just checking :)
https://www.amazon.com/NUCO-Certified-O ... s9dHJ1ZQ==
Carol, I haven't been to a Hen House in years but there is one just down the street from my work off of Sante Fe. I'll have to stop by and check them out. I too love Target, they often have items that Walmart and Aldi do not (my main grocery shopping stores) so that is a nice change up :)
I'm assuming it is ok to use coconut oil to cook up the hash browns in the skillet? I read on Gabe's phase 1 post that generally pure olive oil is ok for people in the phase 1 diet, is that accurate? I am going grocery shopping tomorrow so I am trying to get ideas for my list tonight. Also, from other posts and information shared I am correct in that most people use pure coconut milk in the phase 1 diet as well? I found a brand at Whole Foods that does not have any additives or gums/guars; just pure coconut and water. It is the brand Native Forest and is an organic unsweetened coconut milk. If I could try adding that in, that would be awesome as I found a simple "mashed sweet potato" recipe that only calls for cooked sweet potato and coconut milk. As I mentioned I am trying to get some more calories in in a day and as you folks have mentioned; coconut milk would def help with that. Currently I am doing good to get 900-1000 calories in per day.
I also saw Gabe's phase 1 diet post linked Broken Arrow Ranch as a source of game meats. I'd like to try adding venison to my diet but wasn't sure if anyone here had every ordered from them before? I guess I am asking if they are allergy safe. After the whole realization that soy is in almost all turkey products, I want to make sure I'm setting myself up for hidden ingredients in their meat options.
Also, I found these pure coconut wraps on Amazon. The only ingredients are Organic Coconut Meat, Organic Coconut Water & Organic Coconut Extra Virgin Coconut Oil. Would these be ok on phase 1? I was thinking maybe they would be if the coconut milk is ok. It would be nice to have a wrap for my ground lamb at dinner. If not and I need to wait until I've healed more, I understand; just checking :)
https://www.amazon.com/NUCO-Certified-O ... s9dHJ1ZQ==
Carol, I haven't been to a Hen House in years but there is one just down the street from my work off of Sante Fe. I'll have to stop by and check them out. I too love Target, they often have items that Walmart and Aldi do not (my main grocery shopping stores) so that is a nice change up :)
Tiffany,
Olive oil should be safe if it's NAOOA certified:
https://www.aboutoliveoil.org/certified-olive-oil-list
If you buy refined coconut oil for frying, it has a much higher smoke point than unrefined coconut oil and olive oil, therefore it works better, and it doesn't leave any coconut taste in the food.
Most of us use almond milk, but coconut milk should work fine.
Any source of venison should be GF and additive-free, since it's generally considered an organically-produced product. I've never personally tried any Broken Arrow Ranch products (I used to be a bowhunter, so I collected my own venison), but I wouldn't be afraid to try it. Only the major commercial meat processors add junk to their meat products. At least I'm not aware that any of the smaller processors have started adding anything to their meats.
Surely there are some safe turkeys out there somewhere. Maybe someone reading this will tell us what brand they are using.
I see no reason why coconut wraps wouldn't work. I'm thinking someone else mentioned them before, but I don't remember who it was.
Tex
Olive oil should be safe if it's NAOOA certified:
https://www.aboutoliveoil.org/certified-olive-oil-list
If you buy refined coconut oil for frying, it has a much higher smoke point than unrefined coconut oil and olive oil, therefore it works better, and it doesn't leave any coconut taste in the food.
Most of us use almond milk, but coconut milk should work fine.
Any source of venison should be GF and additive-free, since it's generally considered an organically-produced product. I've never personally tried any Broken Arrow Ranch products (I used to be a bowhunter, so I collected my own venison), but I wouldn't be afraid to try it. Only the major commercial meat processors add junk to their meat products. At least I'm not aware that any of the smaller processors have started adding anything to their meats.
Surely there are some safe turkeys out there somewhere. Maybe someone reading this will tell us what brand they are using.
I see no reason why coconut wraps wouldn't work. I'm thinking someone else mentioned them before, but I don't remember who it was.
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,
After doing more research on this page, I just read that anti-anxiety medications (SSRI's) can cause issues with those who have MC. I wish I had known this sooner as I believe it may have contributed to my flare (as well as my food intolerances). Over the summer I got a trial of Xanax from my doctor and was taking 1/2 of 0.5mg pill as needed for my anxiety. Also, once I started this flare back in late-September I asked my doctor for a prescription of Prozac and have been taking 10mg once a day since (I have not taken the Xanax since starting the Prozac). I have always suffered from anxiety but have avoided all medications as they scared me. But with this recent flare, my anxiety was so bad I couldn't handle the day in and day out of the anxiety symptoms. Now I fear I may have made my self worse by taking this med. I haven't really noticed any positive effects from the medication so I plan to stop taking it as of tomorrow (I already took my morning dose today unfortunately ). I don't expect to be magically cured by stopping the anxiety meds but hopefully it will help with my recovery.
I plan to ask my GI dr to extend my Budesonide 9mg a day prescription another month as well. I currently have 10 pills left of 30 that were originally prescribed (they are 9mg ER tablets). I hope he will agree to the refill as he hasn't been much help at all so far :/ I also randomly got an alert from my pharmacy that he prescribed me Cholesterol Light Powder as of yesterday 10/28/19. I'm not sure why this was prescribed as I haven't been in contact with their office in over a week but I did take this medication back when I was first diagnosed seven years ago, so I know what it is at least. That being said, upon my research on this page I see that the "light" version contains lactose which I cannot have. So I am debating calling their office and requesting the "regular" version. That being said, can you take Cholestyramine and Budesonide at the same time? Or do I really need to take both? I guess I figured that it wouldn't hurt to have it on hand in case I needed it? I don't even know if my insurance will approve it as my pharmacy order currently says "Your order has been delayed due to an insurance issue. We'll update the status when the issue has been resolved."
I know I need more time to heal and one month of Budesonide is just not going to be enough, I don't even feel I am ready to taper down yet. I see that some people take an antihistamine when tapering down the Budesonide, is it necessary to take it while actively on it as well, or only only you start tapering down?
Thank you for the information on the coconut oil and NAOO certified olive oil. I bought some refined coconut oil over the weekend and made hashbrowns with it last night to warm up for my breakfast this morning. This is my first time eating the hashbrowns so hopefully it sits well with me as it was a nice breakfast with some applesauce on the side. I've been eating plain baked potatoes with lunch/dinner for the last three days with no issue so I imagine the hashbrowns will be ok. I was lucky to find a brand where the only ingredient was "potatoes", so many other brands had so many additives, it was quite frustrating at first. I get paid on Friday so I plan to order some venison from Broken Arrow Ranch. This would allow my to have ground venison for breakfast with my hashbrowns. I read that protein is a huge part of healing the gut so hopefully this helps me as well as I am currently only eating lamb and sweet and/or plain baked potatoes for lunch and dinner. Over the weekend I plan to try and add in pure coconut milk. As suggested I am only adding in one new food at a time, every five to seven days or so to allow myself ample time to see if they agree with me. If the coconut milk agrees with me, I may order some of those coconut wraps too. They sound really good :)
Also, I see that it is suggested to take a Magnesium supplement as well as a Vit-D3 and Calcium. I found a Magnesium supplement on Amazon that I believe fits the recommended chelated magnesium (magnesium glycinate), link is below. Should I be taking these supplements now or should I wait until I am farther into my recovery? Also could someone link some vit-d and calcium sources that are safe, preferably from Amazon?
https://www.amazon.com/Doctors-Best-Abs ... 592&sr=8-5
After doing more research on this page, I just read that anti-anxiety medications (SSRI's) can cause issues with those who have MC. I wish I had known this sooner as I believe it may have contributed to my flare (as well as my food intolerances). Over the summer I got a trial of Xanax from my doctor and was taking 1/2 of 0.5mg pill as needed for my anxiety. Also, once I started this flare back in late-September I asked my doctor for a prescription of Prozac and have been taking 10mg once a day since (I have not taken the Xanax since starting the Prozac). I have always suffered from anxiety but have avoided all medications as they scared me. But with this recent flare, my anxiety was so bad I couldn't handle the day in and day out of the anxiety symptoms. Now I fear I may have made my self worse by taking this med. I haven't really noticed any positive effects from the medication so I plan to stop taking it as of tomorrow (I already took my morning dose today unfortunately ). I don't expect to be magically cured by stopping the anxiety meds but hopefully it will help with my recovery.
I plan to ask my GI dr to extend my Budesonide 9mg a day prescription another month as well. I currently have 10 pills left of 30 that were originally prescribed (they are 9mg ER tablets). I hope he will agree to the refill as he hasn't been much help at all so far :/ I also randomly got an alert from my pharmacy that he prescribed me Cholesterol Light Powder as of yesterday 10/28/19. I'm not sure why this was prescribed as I haven't been in contact with their office in over a week but I did take this medication back when I was first diagnosed seven years ago, so I know what it is at least. That being said, upon my research on this page I see that the "light" version contains lactose which I cannot have. So I am debating calling their office and requesting the "regular" version. That being said, can you take Cholestyramine and Budesonide at the same time? Or do I really need to take both? I guess I figured that it wouldn't hurt to have it on hand in case I needed it? I don't even know if my insurance will approve it as my pharmacy order currently says "Your order has been delayed due to an insurance issue. We'll update the status when the issue has been resolved."
I know I need more time to heal and one month of Budesonide is just not going to be enough, I don't even feel I am ready to taper down yet. I see that some people take an antihistamine when tapering down the Budesonide, is it necessary to take it while actively on it as well, or only only you start tapering down?
Thank you for the information on the coconut oil and NAOO certified olive oil. I bought some refined coconut oil over the weekend and made hashbrowns with it last night to warm up for my breakfast this morning. This is my first time eating the hashbrowns so hopefully it sits well with me as it was a nice breakfast with some applesauce on the side. I've been eating plain baked potatoes with lunch/dinner for the last three days with no issue so I imagine the hashbrowns will be ok. I was lucky to find a brand where the only ingredient was "potatoes", so many other brands had so many additives, it was quite frustrating at first. I get paid on Friday so I plan to order some venison from Broken Arrow Ranch. This would allow my to have ground venison for breakfast with my hashbrowns. I read that protein is a huge part of healing the gut so hopefully this helps me as well as I am currently only eating lamb and sweet and/or plain baked potatoes for lunch and dinner. Over the weekend I plan to try and add in pure coconut milk. As suggested I am only adding in one new food at a time, every five to seven days or so to allow myself ample time to see if they agree with me. If the coconut milk agrees with me, I may order some of those coconut wraps too. They sound really good :)
Also, I see that it is suggested to take a Magnesium supplement as well as a Vit-D3 and Calcium. I found a Magnesium supplement on Amazon that I believe fits the recommended chelated magnesium (magnesium glycinate), link is below. Should I be taking these supplements now or should I wait until I am farther into my recovery? Also could someone link some vit-d and calcium sources that are safe, preferably from Amazon?
https://www.amazon.com/Doctors-Best-Abs ... 592&sr=8-5
Tiffany,
You may not be able to stop taking Prozac cold turkey. Check the label or ask your doctor if you need to taper the dose if you want to stop taking it. Start taking magnesium (if you aren't already) in order to treat/prevent the anxiety symptoms.
Cholestyramine works better later (after following the GF diet for a while) rather than sooner, so it might work better now, if you can find the right dose. Yes, it can be taken with budesonide. Just remember to take the budesonide (or any other medication or supplements) two hours before, or two hours after taking the cholestyramine. I thought that cholestyramine was relatively inexpensive (because it's an old drug), so insurance shouldn't be a problem. Just buy it outright.
You shouldn't need to take both at the same time, because budesonide will enhance bile recycling in the terminal ileum, which will allow you to absorb some fats. With cholestyramine, you will lose those fats because they will be purged with the bile that's sequestered. Most people find it easier to work with their GP than their GI doc, so your GP would probably renew your budesonide prescription. Ask whichever one is easiest to work with, first.
An antihistamine works best when ending a budesonide treatment (after taking the last dose).
Red or yellow potatoes are easier to digest, because their starch is mostly amylopectin. Russets are harder to digest because of their high amylose starch content, but they hold together better when cooked, so they bake better.
Tex
You may not be able to stop taking Prozac cold turkey. Check the label or ask your doctor if you need to taper the dose if you want to stop taking it. Start taking magnesium (if you aren't already) in order to treat/prevent the anxiety symptoms.
Cholestyramine works better later (after following the GF diet for a while) rather than sooner, so it might work better now, if you can find the right dose. Yes, it can be taken with budesonide. Just remember to take the budesonide (or any other medication or supplements) two hours before, or two hours after taking the cholestyramine. I thought that cholestyramine was relatively inexpensive (because it's an old drug), so insurance shouldn't be a problem. Just buy it outright.
You shouldn't need to take both at the same time, because budesonide will enhance bile recycling in the terminal ileum, which will allow you to absorb some fats. With cholestyramine, you will lose those fats because they will be purged with the bile that's sequestered. Most people find it easier to work with their GP than their GI doc, so your GP would probably renew your budesonide prescription. Ask whichever one is easiest to work with, first.
An antihistamine works best when ending a budesonide treatment (after taking the last dose).
Red or yellow potatoes are easier to digest, because their starch is mostly amylopectin. Russets are harder to digest because of their high amylose starch content, but they hold together better when cooked, so they bake better.
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.
Thanks Tex. I have been successfully eating hashbrowns cooked in refined coconut for a few days now . I plan to go to Whole Foods to get some guar/gum free coconut milk tomorrow. I was able to get the standard Questran and Budesonide refills from my GI doctor. At what point is it recommended to start taking the Questran? I know you said later in my recovery, I am currently on week two of the phase one diet. Ill be ordering the Doctors Best Magnesium from Amazon this weekend. I also found the following VitD 3 from the same manufacturer. Is this ok for me even though it has "bovine gelatin"? My EnteroLab results said I had some immunological reactivity to beef but it was the lowest scoring of the "some reactivity" category. If like to order the supplements at the same time but wanted to get your opinion first.
Hi Tiffany,
Many of us use that same brand of vitamin D. The bovine gelatin is just collagen, used to make the capsules, and normally, in the case of beef derivatives, small amounts such as that don't cause any problems for someone sensitive to beef. I'm sensitive to beef, and I never worry about the capsules.
I would give the budesonide at least a couple of weeks (it usually begins working by then), to see if it's going to stop the diarrhea. If it doesn't, then you might consider trying the cholestyramine. You might want to use the budesonide longer before starting cholestyramine because in some cases it works slower. They're safe to take together, but personally, I don't believe I would use them together, because if you begin to improve, you won't know which drug is helping. But that's just my opinion.
Tex
Many of us use that same brand of vitamin D. The bovine gelatin is just collagen, used to make the capsules, and normally, in the case of beef derivatives, small amounts such as that don't cause any problems for someone sensitive to beef. I'm sensitive to beef, and I never worry about the capsules.
I would give the budesonide at least a couple of weeks (it usually begins working by then), to see if it's going to stop the diarrhea. If it doesn't, then you might consider trying the cholestyramine. You might want to use the budesonide longer before starting cholestyramine because in some cases it works slower. They're safe to take together, but personally, I don't believe I would use them together, because if you begin to improve, you won't know which drug is helping. But that's just my opinion.
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.
Hello everyone, I hope you're all doing well during this crazy holiday season! I just wanted to come back and get some additional input if I can please? I've been on 9mg Budesonide for two months. I saw great improvement in this two month time frame. Went back to well formed stools, usually only once a day. I eat cooked potatoes, sweet potatoes, carrots, bananas, apples, ground lamb, ground turkey and coconut milk. I recently added in plantain rolls to increase my calorie intake (plantain, cassava flour, virgin olive oil, coconut milk and salt) I've been eating those for over two weeks so I don't think that is the issue but have cut them out over the past two days to see (no change or improvement so far) I have stuck to my diet 100% no cheating. Four days ago I tapered down to 6mg Budesonide and have already seen a decline in my stool quality. And by that I mean my stools are becoming softer, still mostly formed so far but over the past three days but they've gotten softer as the days go on and the yellow tinge seems to be returning; which I believe to be bile. This morning was the worst so far, which I can only describe as mushy soft serve consistency (sorry tmi). Also my abdominal pain and cramping has come back which really sucks because I was so glad to have been rid of that the past month, sometimes I want to just curl up in a ball and go to bed. Additionally, I drink pure organic, caffeine free peppermint tea after breakfast as it helps settle my stomach but I've been doing that for two months now with no I'll effects. I know that many people start taking an antihistamine when tapering Budesonide due to mast cell but it was my understanding that you didn't need to do that until you got down to the 3mg and then when you stopped. Is that incorrect? Do I need to start taking that now? If so, I will pick some up at the store today. Also, I have Questran packets prescribed to me as well and started taking those yesterday, one in the morning and one at night. I did make it through our Christmas shopping yesterday without incident which I am very grateful for. With the yellow color in my stool (that was especially bad during the height of my flare) I do wonder if I have a bile malabsorption issue. With the Questran I know you have to take it two hours before and two hours after any medication. Any input would be greatly appreciated. I was really hoping to get off Budesonide but I don't want to go back to the loose stools and urgency. My GI prescribed two weeks at 6mg and then two weeks at 3mg. Which I don't believe will be enough, I believe I'll need to be on 6mg at least a month, minimum, if not two 
And I even wonder if I need to go back up to 9mg? Again, I am so grateful for this page and I hope everyone's Christmas season is wonderful <3
And I even wonder if I need to go back up to 9mg? Again, I am so grateful for this page and I hope everyone's Christmas season is wonderful <3Hi Tiffany,
I have to admit, based on what you describe I think it sounds like staying on 9mg is the thing to do. If you were healed more then dropping to 6mg shouldn’t have resulted in such a dramatic change. Many of us reduced our Budesonide at the point it was causing constipation and even some cramping. That was true for me, then when I reduced to 6mg the cramps and constipation went away. As soon as it returned I dropped to 3mg, then it would let up.
Moving your dosage back to what was successful is not a shortcoming or failure. Do what you instinctively feel makes sense for you. I also agree that you’ll need more time to titrate down. There’s no need to rush it. Honestly the rush of the holiday season might be reason enough to stay on the 9mg dose.
I’m sorry I don’t have any experience with Questran. As far as an antihistamines go, you could try one now but you are remembering correctly in that most others start antihistamines as they are titrating off Budesonide.
Your strict adherence to your diet will be a major factor in not rebounding after you are completely off Budesonide.
Hopefully someone else will jump in too.
Wishing you a very happy holiday season. Stay warm. I think we’ve gotten 4-5 inches of snow here in Lenexa.
Carol
I have to admit, based on what you describe I think it sounds like staying on 9mg is the thing to do. If you were healed more then dropping to 6mg shouldn’t have resulted in such a dramatic change. Many of us reduced our Budesonide at the point it was causing constipation and even some cramping. That was true for me, then when I reduced to 6mg the cramps and constipation went away. As soon as it returned I dropped to 3mg, then it would let up.
Moving your dosage back to what was successful is not a shortcoming or failure. Do what you instinctively feel makes sense for you. I also agree that you’ll need more time to titrate down. There’s no need to rush it. Honestly the rush of the holiday season might be reason enough to stay on the 9mg dose.
I’m sorry I don’t have any experience with Questran. As far as an antihistamines go, you could try one now but you are remembering correctly in that most others start antihistamines as they are titrating off Budesonide.
Your strict adherence to your diet will be a major factor in not rebounding after you are completely off Budesonide.
Hopefully someone else will jump in too.
Wishing you a very happy holiday season. Stay warm. I think we’ve gotten 4-5 inches of snow here in Lenexa.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Hi Tiffany,
I completely agree with Carol. You do not appear ready to step down to 6 mg of budesonide. Not enough healing has occurred. The yellow color could also be simply an indication of rapid transit (faster turnaround time). Stool gets it's normal brownish coloration from bilirubin. But the color transformation requires normal transit time.
I note that the olive oil could be contaminated with soy unless it's a certified brand:
https://www.aboutoliveoil.org/certified-olive-oil-list
and a small percentage of us react to coconut oil.
I hope this helps.
Tex
I completely agree with Carol. You do not appear ready to step down to 6 mg of budesonide. Not enough healing has occurred. The yellow color could also be simply an indication of rapid transit (faster turnaround time). Stool gets it's normal brownish coloration from bilirubin. But the color transformation requires normal transit time.
I note that the olive oil could be contaminated with soy unless it's a certified brand:
https://www.aboutoliveoil.org/certified-olive-oil-list
and a small percentage of us react to coconut oil.
I hope this helps.
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.
Hello Tiffany,
Another option I found on this forum is to try alternating days of 9 mg and 6 mg before going to 6 mg daily. And then do the same when tapering down from 6 mg by alternating 6 mg and 3 mg each day before tapering to 3 mg daily. (I am tapering so slowly that I am now only taking 3 mg every five days with good results and just about to taper to every six days.)
I hope you feel better soon.
Another option I found on this forum is to try alternating days of 9 mg and 6 mg before going to 6 mg daily. And then do the same when tapering down from 6 mg by alternating 6 mg and 3 mg each day before tapering to 3 mg daily. (I am tapering so slowly that I am now only taking 3 mg every five days with good results and just about to taper to every six days.)
I hope you feel better soon.
Some days there won't be a song in your heart. Sing anyway. —Emory Austin
Carol, thank you for the reminder that needing go back up to 9mg is not a failure. As that is exactly how I have felt these past six days. I felt like my body wasn't cooperating with me on this healing process and I have been very frustrated. But as my husband gently reminded me, in certain situations it is ok to use modern medicine to help us when we are really sick. I've lost a total of twenty pounds since late-September. I had gained back 4-5lbs but lost it all this past week. My GI dr did agree that I need to go back up to 9mg for at least two months. Which was a relief as he is very unhelpful in general and I was afraid he would still push for the lower dose. I filled my 9mg prescription yesterday and started re-taking it this morning. I've taken the Questran two times a day for the last two days, I can't tell yet if it is helping or not but I'll stick with it awhile longer to see. Although, with the increased Budesonide dose, I am tempted to lower and then stop the Questran as I want to be able to tell if the Budesonide is what is helping me or not. When on the 9mg the past two months, I did not have a need for the Questran. Thank you for confirming that most folks start the antihistamines at the end of their taper. I will plan to do the same when that time comes. I was able to find a safe source for ground turkey at McGonigle's in Kansas City, MO. They do not add any ingredients to the following ground products; beef, veal, chicken, pork or turkey. Just wanted to share because you're in the same area. I've only tried the ground turkey as I am only eating lamb and turkey at the moment but I am sure the others are good as well. I hope you have a great holiday season as well! I think we got around 5 inches of snow here in Gardner. Definitely more than I was expecting lol My son was very happy to have a snow day yesterday.
Tex, thank you. I definitely agree with everyone that not enough healing has occurred. My body let me know that right away. Thank you for explaining the science behind stool color. That makes a lot of sense. Fortunately I am using a certified brand of olive oil, the Aldi Carlini brand. I don't believe I am reactive to coconut. I've been using refined coconut oil and plain canned coconut milk (no guars or gums) and haven't noticed any adverse reactions. I use the refined coconut oil to make my hash browns and the coconut milk to make mashed sweet potatoes. Luckily, I've always liked coconut :) One quick question regarding a potential product. Is this turkey bacon a potential option for me? The ingredients are probably some of the most basic I've seen, though I do wonder about the vinegar and celery powder. I know I need to have more protein in my meals but struggle with having meat with breakfast as the smell often makes me nauseous early in the day. I thought maybe having a more "traditional" item (bacon) may entice my appetite a bit more. If this is not a safe option, I'll do a hard pass but just wanted to inquire about the possibility. Below is a link to the product through Walmart's website:
https://www.walmart.com/ip/Sam-s-Choice ... z/36511541
Harmony, thank you for the suggestion. My husband actually asked me if that was a possibility; to do 9mg one day and 6mg the next and so on and so forth through the tapering process. I think, once I am at that point down the line, that is the approach I will take. I am so glad to hear that you are having good results with your taper regime. That is awesome and I know it gives us who are in the throws of the Budesonide route, hope for our future as well. I pray continued success on your healing journey!
Tex, thank you. I definitely agree with everyone that not enough healing has occurred. My body let me know that right away. Thank you for explaining the science behind stool color. That makes a lot of sense. Fortunately I am using a certified brand of olive oil, the Aldi Carlini brand. I don't believe I am reactive to coconut. I've been using refined coconut oil and plain canned coconut milk (no guars or gums) and haven't noticed any adverse reactions. I use the refined coconut oil to make my hash browns and the coconut milk to make mashed sweet potatoes. Luckily, I've always liked coconut :) One quick question regarding a potential product. Is this turkey bacon a potential option for me? The ingredients are probably some of the most basic I've seen, though I do wonder about the vinegar and celery powder. I know I need to have more protein in my meals but struggle with having meat with breakfast as the smell often makes me nauseous early in the day. I thought maybe having a more "traditional" item (bacon) may entice my appetite a bit more. If this is not a safe option, I'll do a hard pass but just wanted to inquire about the possibility. Below is a link to the product through Walmart's website:
https://www.walmart.com/ip/Sam-s-Choice ... z/36511541
Harmony, thank you for the suggestion. My husband actually asked me if that was a possibility; to do 9mg one day and 6mg the next and so on and so forth through the tapering process. I think, once I am at that point down the line, that is the approach I will take. I am so glad to hear that you are having good results with your taper regime. That is awesome and I know it gives us who are in the throws of the Budesonide route, hope for our future as well. I pray continued success on your healing journey!
Hi Tiffany,
I know that feeling of ‘darn, I thought I was better but today I’m not’ and feeling like I must be doing something wrong. But the reality is that we are always in flux and our bodies are trying to find its balance again. So we are up and down. It’s not a failing...it’s just the nature of things.
I’m not Tex, obviously, but I think that turkey bacon looks better than most. I looked at some other brands recently and was disappointed at how processed they were- they were using gums or a soy emulsifier as a binder. Yuck! But I would try the brand you posted. Seems like a good find. Thanks about the tip re: McGonigles. We can never have too many safe quality options.
I’ve had your same experience of dropping 20+ pounds in a short amount of time. Is the Budesonide slowing that down any? That’s a significant flare! I couldn’t eat in the mornings either. I would carry my rice cakes and deli turkey with me and at the first sign that my stomach might allow it I’d choke those down. But it was often 10 or 11:00 am before that would happen. Finding Earth Balance soy-free butter spread was a big boost for me. I tolerated it well, it tasted good and I needed the calories. Added to my red potatoes and other roasted vegetables, it made my food more interesting and helped my appetite.
Your husband sounds like he’s a good support system and thats essential. This can most definitely be an isolating and anxiety provoking condition. Hang in there and keep in touch.
Carol
I know that feeling of ‘darn, I thought I was better but today I’m not’ and feeling like I must be doing something wrong. But the reality is that we are always in flux and our bodies are trying to find its balance again. So we are up and down. It’s not a failing...it’s just the nature of things.
I’m not Tex, obviously, but I think that turkey bacon looks better than most. I looked at some other brands recently and was disappointed at how processed they were- they were using gums or a soy emulsifier as a binder. Yuck! But I would try the brand you posted. Seems like a good find. Thanks about the tip re: McGonigles. We can never have too many safe quality options.
I’ve had your same experience of dropping 20+ pounds in a short amount of time. Is the Budesonide slowing that down any? That’s a significant flare! I couldn’t eat in the mornings either. I would carry my rice cakes and deli turkey with me and at the first sign that my stomach might allow it I’d choke those down. But it was often 10 or 11:00 am before that would happen. Finding Earth Balance soy-free butter spread was a big boost for me. I tolerated it well, it tasted good and I needed the calories. Added to my red potatoes and other roasted vegetables, it made my food more interesting and helped my appetite.
Your husband sounds like he’s a good support system and thats essential. This can most definitely be an isolating and anxiety provoking condition. Hang in there and keep in touch.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Tiffany,
All I can say is "ditto". Carol's comments and advice look good to me.
I'll mention that as my chronic magnesium deficiency became more severe (a few years ago) not only did I lose my desire to eat breakfast, but I couldn't even force myself to eat the morning I finally caved in and went to the ER (but I was also having other symptoms during the wee hours of the morning, such as night sweats, tachicardia, rapid, shallow breathing, low blood pressure, etc.).
Tex
All I can say is "ditto". Carol's comments and advice look good to me.
I'll mention that as my chronic magnesium deficiency became more severe (a few years ago) not only did I lose my desire to eat breakfast, but I couldn't even force myself to eat the morning I finally caved in and went to the ER (but I was also having other symptoms during the wee hours of the morning, such as night sweats, tachicardia, rapid, shallow breathing, low blood pressure, etc.).
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.