Was so wishing to start healing sooner, waiting for food to do it was not what I wanted to do, I'm tired of feeling out of control! Just hate this disease
So sad...Hate this disease !!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
So sad...Hate this disease !!
Just had follow up with dr, he wants me to omit all toxic foods from my test results for three weeks. If after that I still have diarrhea he'll prescribe budesonine.
Was so wishing to start healing sooner, waiting for food to do it was not what I wanted to do, I'm tired of feeling out of control! Just hate this disease
Was so wishing to start healing sooner, waiting for food to do it was not what I wanted to do, I'm tired of feeling out of control! Just hate this disease
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UkuleleLady
- Gentoo Penguin
- Posts: 383
- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
I would see another doctor, depending on how miserable I was. Many of us used Entocort (budesonide) while eliminating our allergic foods. I don't see why you can't unless you have a problem with steroids.
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
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humbird753
- Rockhopper Penguin
- Posts: 1014
- Joined: Mon Nov 28, 2011 4:44 pm
- Location: Wisconsin
I along with others here can definitely understand the frustration you must be feeling right now. I hate this disease also!
In many ways, it sounds like you may have a good doctor as he/she at least understands that by eliminating the foods you've become intolerant to will turn things around for you. The specialist I saw after I was diagnosed with LC told me food had nothing to do with it. It's also possible your doctor wants to avoid drug use unless absolutely necessary.
What I've said may not bring much comfort to you, although I hope it does.
This disease does try our patience, but it is doable. And... we are all here for you. I know I would not be as successful in my healing journey if I didn't have this "family" as support.
Others will chime in, I am sure, with their own stories or opinions.
((Hugs))
Paula
In many ways, it sounds like you may have a good doctor as he/she at least understands that by eliminating the foods you've become intolerant to will turn things around for you. The specialist I saw after I was diagnosed with LC told me food had nothing to do with it. It's also possible your doctor wants to avoid drug use unless absolutely necessary.
What I've said may not bring much comfort to you, although I hope it does.
This disease does try our patience, but it is doable. And... we are all here for you. I know I would not be as successful in my healing journey if I didn't have this "family" as support.
Others will chime in, I am sure, with their own stories or opinions.
((Hugs))
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
Erica,
I'm guessing that your doctor doesn't want to prescribe Entocort because he incorrectly believes that you will quickly respond to the diet changes (so you won't need the Entocort), and he doesn't want to mask your symptoms with Entocort because then he wouldn't be able to tell if it was the diet changes or the Entocort that is suppressing your symptoms.
The problem is that most of us do not respond to the diet changes that quickly, so as Nancy and Paula have pointed out, we take Entocort during that time so that we don't have to suffer with the symptoms while the diet changes are healing the gut. Then after enough time has passed, we can slowly wean off the Entocort and the diet changes will maintain remission.
You are blessed to have a doctor who seems to understand the disease better than most GI specialists, but sometimes a little knowledge can be a bad thing. Your doctor's intentions are good, but his expectations are somewhat unrealistic, because it's seldom that easy — most of us encounter glitches in our recovery, so it almost always takes much longer than we (or our doctors) expect. So why make the patient suffer for an extended period (by withholding Entocort), when it's totally unnecessary?
Tex
I'm guessing that your doctor doesn't want to prescribe Entocort because he incorrectly believes that you will quickly respond to the diet changes (so you won't need the Entocort), and he doesn't want to mask your symptoms with Entocort because then he wouldn't be able to tell if it was the diet changes or the Entocort that is suppressing your symptoms.
The problem is that most of us do not respond to the diet changes that quickly, so as Nancy and Paula have pointed out, we take Entocort during that time so that we don't have to suffer with the symptoms while the diet changes are healing the gut. Then after enough time has passed, we can slowly wean off the Entocort and the diet changes will maintain remission.
You are blessed to have a doctor who seems to understand the disease better than most GI specialists, but sometimes a little knowledge can be a bad thing. Your doctor's intentions are good, but his expectations are somewhat unrealistic, because it's seldom that easy — most of us encounter glitches in our recovery, so it almost always takes much longer than we (or our doctors) expect. So why make the patient suffer for an extended period (by withholding Entocort), when it's totally unnecessary?
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I appreciate the kinds words....they give me a little more light than what I have been feeling all afternoon. This stage is so maddening and makes me sad it has to be this way.
To throw gas on the fire there was a 4 day food rotation schedule that Dr. Moore asked me to follow best I can for these next 14-21 days....I have so many food allergens that the foods left over don't make for very appetizing meals on any but one of those days. I don't even know what I am going to have for breakfast tomorrow besides pears and cranberries
Lunch isn't any better I feel like I am going to have more empty belly than full one for a little while.
The thing that annoys me the most is that I know how I want to treat this, and it just makes for another Office visit and bill taboot. I like Drs and then I get frustrated with them at the same time.
I have things I want to do, and I may not be able to feel like I can do them knowing I have to wait a month. I want energy, and I can't really afford to loose weight I'm 5'9" and 145 lbs, this disease affords just so much to let us do basic motions to things, anything more and it upsets my guts and I don't find pleasure in anything after that.
I know Tex, try not to focus on the daily grind...it will be the next week or month that I will notice better things.
Sigh...I hate being a debbydowner.
I hope everyone has a good evening,
Erica
To throw gas on the fire there was a 4 day food rotation schedule that Dr. Moore asked me to follow best I can for these next 14-21 days....I have so many food allergens that the foods left over don't make for very appetizing meals on any but one of those days. I don't even know what I am going to have for breakfast tomorrow besides pears and cranberries
Lunch isn't any better I feel like I am going to have more empty belly than full one for a little while.The thing that annoys me the most is that I know how I want to treat this, and it just makes for another Office visit and bill taboot. I like Drs and then I get frustrated with them at the same time.
I have things I want to do, and I may not be able to feel like I can do them knowing I have to wait a month. I want energy, and I can't really afford to loose weight I'm 5'9" and 145 lbs, this disease affords just so much to let us do basic motions to things, anything more and it upsets my guts and I don't find pleasure in anything after that.
I know Tex, try not to focus on the daily grind...it will be the next week or month that I will notice better things.
Sigh...I hate being a debbydowner.
I hope everyone has a good evening,
Erica
Hi Erica,
I just took a quick look at your intolerances, but it seems like you can eat chicken and turkey for meat? Maybe you could add in gluten-free pasta with some veggies or beans that you can tolerate? That would be filling. If you can eat any nut butters, you could have those on GF toast with whatever fruit you can tolerate? That fills me up for a whole morning.
If I were you, I would press the GI doc to give you the budesonide now and let you get the food thing going while you're on it. That's what my GI doc did. I was in such despair at my diagnosis, but the budesonide in combination with food advice from folks here helped me regain a sense of control and get on track to manage my LC instead of continuing to feel defeated by it.
I don't have as many problem foods as you do, but maybe it would help, instead of looking at the list of what you CAN'T eat, to make a list of all the foods you CAN eat--you'll see it is a long list!-- and start building an eating plan from there. I would stick to those foods in their simple form, and avoid processed foods with lots of obscure ingredients that could trip things up. You can start educating yourself about the "hidden" ingredients that are problematic for us.
In terms of regaining energy, that took me a while. Healing the gut took a lot of energy, and I felt better when I ate a lot of protein. But I also slept a lot, and could not expect to maintain the level of exercise I had previously done. It was very frustrating--baby steps over the better part of a year.
Hang in there. There are others here with similar numbers of problem foods, and I'm sure they will chime in with ideas.
I just took a quick look at your intolerances, but it seems like you can eat chicken and turkey for meat? Maybe you could add in gluten-free pasta with some veggies or beans that you can tolerate? That would be filling. If you can eat any nut butters, you could have those on GF toast with whatever fruit you can tolerate? That fills me up for a whole morning.
If I were you, I would press the GI doc to give you the budesonide now and let you get the food thing going while you're on it. That's what my GI doc did. I was in such despair at my diagnosis, but the budesonide in combination with food advice from folks here helped me regain a sense of control and get on track to manage my LC instead of continuing to feel defeated by it.
I don't have as many problem foods as you do, but maybe it would help, instead of looking at the list of what you CAN'T eat, to make a list of all the foods you CAN eat--you'll see it is a long list!-- and start building an eating plan from there. I would stick to those foods in their simple form, and avoid processed foods with lots of obscure ingredients that could trip things up. You can start educating yourself about the "hidden" ingredients that are problematic for us.
In terms of regaining energy, that took me a while. Healing the gut took a lot of energy, and I felt better when I ate a lot of protein. But I also slept a lot, and could not expect to maintain the level of exercise I had previously done. It was very frustrating--baby steps over the better part of a year.
Hang in there. There are others here with similar numbers of problem foods, and I'm sure they will chime in with ideas.
Suze
Thanks Suze, and Brenda,
I tried to get my point across before leaving the Dr. office that I have been so compromised for so long that another two weeks will not be a magic trick in healing, but he wouldn't have anything of it at that time to give me the prescription, he said 'hang in there, give it two weeks'..
Ok so I hang in there, and I grumble a lot. Because there is a four day rotation food list that Dr. would like me to try to follow best I can, I have to admit I have cheated some on it because the foods I like to eat compared to the foods that are listed don't see eye to eye.
Here are the foods that say I have a low reaction if any for me, which ones in anyone's opinion are SAFE right now to eat regardless if this list says they are, if I have to narrow this list down some to begin with I will be ok doing it:
All Seafood
Oat
Turkey
Chicken
Pork
Potato, Tapioca, buckwheat FLOURS
Corn, Corn starch
Brown rice
White rice
Garbanzo bean
Lentil
Black olive
Carrot
Celery
Parsnip
Water chestnut
Beet
Potatoes
Spinach
Tomato
Cucumber
Onion
Pea
Pumpkin
Summer squash
Zucchini
Broccoli
Cabbage
Cauliflower
Lettuce
Radish
Fig
Papaya
White grape
Blueberry
Cranberry
Currants
Pear
Blackberry
Boysenberry
Cantelope
Honeydew
Raspberry
Strawberry
Watermelon
Apricot
Grapefruit
Lemon
Lime
Nectarine
Orange
Peach
Tangerine
Cashews, Peanuts, Walnuts and their oils
Olive oil
Coconut and its oil
Pecan
Sesame seed and its oil
Anise, Basil, Black pepper, Cilantro, Cumin, Dill, Marjoram, Parsley, Peppermint, Rosemary, Sage, Spearmint, Thyme, Allspice, Oregano, Cloves, Paprika, Vanilla, Nutmeg, Tumeric, Bay Leaf, Cinnamon, Mustard, Tarragon.
Bakers and Brewers yeast, Cane sugar, Carob, Black tea, Tapioca, Honey, Chocolate (obviously without dairy and soy), cocoa, maple sugar, maple syrup.
To me this doesn't seem like a very long list to choose from, but I'm sure once I'm not subjected to eating a strict 4-day rotation diet for another week and a half I can make do with some of these choices once I'm able to start taking budesonide.
Yes I have been tired ALOT, just when I think I can clean house or attend a function, it is about all I can do to finish a project, or attend the event. This is not like me, I can remember before I was 40 I could do a lot and then some. When the horses passed away I didn't get anymore because I just didn't feel strong enough to take care of them, let along swing a saddle on their back. There were numerous times I would be feeding in the morning and a diarrhea attack would hit. Not fun when you are 100ft from the house.
I have to say, I may be tired right now, but at least the bathroom trips have lessoned since my learning of the food sensitivities, still have diarrhea but I just feel that is the way it is until I can help it with the steroid. This is a beginning step, still wish I was guided to the food test three years ago after my colonoscopy in 2012
Thank you All for being here, it's not quite so lonely....
Hugs
Erica
I tried to get my point across before leaving the Dr. office that I have been so compromised for so long that another two weeks will not be a magic trick in healing, but he wouldn't have anything of it at that time to give me the prescription, he said 'hang in there, give it two weeks'..
Ok so I hang in there, and I grumble a lot. Because there is a four day rotation food list that Dr. would like me to try to follow best I can, I have to admit I have cheated some on it because the foods I like to eat compared to the foods that are listed don't see eye to eye.
Here are the foods that say I have a low reaction if any for me, which ones in anyone's opinion are SAFE right now to eat regardless if this list says they are, if I have to narrow this list down some to begin with I will be ok doing it:
All Seafood
Oat
Turkey
Chicken
Pork
Potato, Tapioca, buckwheat FLOURS
Corn, Corn starch
Brown rice
White rice
Garbanzo bean
Lentil
Black olive
Carrot
Celery
Parsnip
Water chestnut
Beet
Potatoes
Spinach
Tomato
Cucumber
Onion
Pea
Pumpkin
Summer squash
Zucchini
Broccoli
Cabbage
Cauliflower
Lettuce
Radish
Fig
Papaya
White grape
Blueberry
Cranberry
Currants
Pear
Blackberry
Boysenberry
Cantelope
Honeydew
Raspberry
Strawberry
Watermelon
Apricot
Grapefruit
Lemon
Lime
Nectarine
Orange
Peach
Tangerine
Cashews, Peanuts, Walnuts and their oils
Olive oil
Coconut and its oil
Pecan
Sesame seed and its oil
Anise, Basil, Black pepper, Cilantro, Cumin, Dill, Marjoram, Parsley, Peppermint, Rosemary, Sage, Spearmint, Thyme, Allspice, Oregano, Cloves, Paprika, Vanilla, Nutmeg, Tumeric, Bay Leaf, Cinnamon, Mustard, Tarragon.
Bakers and Brewers yeast, Cane sugar, Carob, Black tea, Tapioca, Honey, Chocolate (obviously without dairy and soy), cocoa, maple sugar, maple syrup.
To me this doesn't seem like a very long list to choose from, but I'm sure once I'm not subjected to eating a strict 4-day rotation diet for another week and a half I can make do with some of these choices once I'm able to start taking budesonide.
Yes I have been tired ALOT, just when I think I can clean house or attend a function, it is about all I can do to finish a project, or attend the event. This is not like me, I can remember before I was 40 I could do a lot and then some. When the horses passed away I didn't get anymore because I just didn't feel strong enough to take care of them, let along swing a saddle on their back. There were numerous times I would be feeding in the morning and a diarrhea attack would hit. Not fun when you are 100ft from the house.
I have to say, I may be tired right now, but at least the bathroom trips have lessoned since my learning of the food sensitivities, still have diarrhea but I just feel that is the way it is until I can help it with the steroid. This is a beginning step, still wish I was guided to the food test three years ago after my colonoscopy in 2012
Thank you All for being here, it's not quite so lonely....
Hugs
Erica
Erica, I am so sorry for your troubles! We have all been there an remember how overwhelming it can be.
I have been in remission for a couple of months after following a strict diet for 6 months. I am a cook (former restaurant owner) and a "foodie" so simplifying my diet seemed so awful to me. The good news is that now it's second nature and really a lot easier than the meals I was constructing before.
You have a huge list of "safe" foods there. I would limit it MUCH more to get started - simplicity is best and easiest. Here's what I would have on hand in your cupboard:
Meat: poultry, lamb, fish, beef, pork - cooked plain with salt and pepper
Rice: Cook enough for a couple of meals. Add some coconut oil and salt to the water while it's cooking. Eat about 1 cup a day.
Rice cakes, rice crackers, cashew or almond butter, low sugar jam - this is what I eat for breakfast.
Cooked veggies: sweet potato, green beans, carrots, winter squash, asparagus, beets, zucchini - start with about 1/2 cup and work up from there. No raw veggies for now.
Potato - cooked plain - I like mine with olive oil and I eat it with dinner with some meat/fish
No fruit juice for now, but some tea or coffee with coconut or almond milk and a little sweetener. Unsweetened ice tea. No soda.
Please skip the dried beans, broccoli, cabbage and cauliflower for now - very gassy.
No dairy, including butter.
Also skip raw fruits, except not-to-ripe bananas in the beginning but you can try a little applesauce.
You will be surprised that this food will be quite satisfying after an initial 2 weeks of feeling pretty deprived! I have now been able to reintroduce very dark chocolate and a bit of wine. I am well satisfied, have my energy back, and don't spend the day (and night) in the bathroom!
Some newbies post to the list what they are eating every day, for awhile, as a kind of food diary. Feel free to post frequently - lots of people here who know what you're going through...
Chris
I have been in remission for a couple of months after following a strict diet for 6 months. I am a cook (former restaurant owner) and a "foodie" so simplifying my diet seemed so awful to me. The good news is that now it's second nature and really a lot easier than the meals I was constructing before.
You have a huge list of "safe" foods there. I would limit it MUCH more to get started - simplicity is best and easiest. Here's what I would have on hand in your cupboard:
Meat: poultry, lamb, fish, beef, pork - cooked plain with salt and pepper
Rice: Cook enough for a couple of meals. Add some coconut oil and salt to the water while it's cooking. Eat about 1 cup a day.
Rice cakes, rice crackers, cashew or almond butter, low sugar jam - this is what I eat for breakfast.
Cooked veggies: sweet potato, green beans, carrots, winter squash, asparagus, beets, zucchini - start with about 1/2 cup and work up from there. No raw veggies for now.
Potato - cooked plain - I like mine with olive oil and I eat it with dinner with some meat/fish
No fruit juice for now, but some tea or coffee with coconut or almond milk and a little sweetener. Unsweetened ice tea. No soda.
Please skip the dried beans, broccoli, cabbage and cauliflower for now - very gassy.
No dairy, including butter.
Also skip raw fruits, except not-to-ripe bananas in the beginning but you can try a little applesauce.
You will be surprised that this food will be quite satisfying after an initial 2 weeks of feeling pretty deprived! I have now been able to reintroduce very dark chocolate and a bit of wine. I am well satisfied, have my energy back, and don't spend the day (and night) in the bathroom!
Some newbies post to the list what they are eating every day, for awhile, as a kind of food diary. Feel free to post frequently - lots of people here who know what you're going through...
Chris
Thank you Chris,
I notice that is quite a small list of staple foods to begin with. I will take your sample and cross out the items that were super high sensitivity on my food report and inject a couple low ones in there that ought to work fine.
I notice I don't do so well with any fruit types at the moment, so it may be meats, nuts, steamed veges and rice as a baseline. How long would I need to stay on this strict of a food regime while I am also on Budesonide? Is this how I will need to eat until I am weaned off of it? Just need to know so that I can give my body the best chance of remission as possible.
So far I notice I can sleep thru most nights now (unless my estrogen changes-still going thru the menopause thing then I may awake in the night, not fun).
I'm so happy that you have reached a remission point :-) that is positive, and makes me want to be there even that much more.
Thanks again Chris, I'm trying not to feel so sad about all this anymore, but I have my days If anything, it has helped when someone has made a post with their thoughts an opinions here, it breaks up my monotony and gives me food for thought 
I appreciate them all.
Here's to the coming weekend, may it be a good one for all.
Cheers
Erica
I notice that is quite a small list of staple foods to begin with. I will take your sample and cross out the items that were super high sensitivity on my food report and inject a couple low ones in there that ought to work fine.
I notice I don't do so well with any fruit types at the moment, so it may be meats, nuts, steamed veges and rice as a baseline. How long would I need to stay on this strict of a food regime while I am also on Budesonide? Is this how I will need to eat until I am weaned off of it? Just need to know so that I can give my body the best chance of remission as possible.
So far I notice I can sleep thru most nights now (unless my estrogen changes-still going thru the menopause thing then I may awake in the night, not fun).
I'm so happy that you have reached a remission point :-) that is positive, and makes me want to be there even that much more.
Thanks again Chris, I'm trying not to feel so sad about all this anymore, but I have my days
If anything, it has helped when someone has made a post with their thoughts an opinions here, it breaks up my monotony and gives me food for thought I appreciate them all.Here's to the coming weekend, may it be a good one for all.
Cheers
Erica
I know how hard it is to "have a good attitude" at times! The worst for me is parties and dinner invitations - so much good-looking food that is off limits right now.
I was on budesonide and lialda for 4 years and wish to heck that I had known about the diet at the beginning. After a few years, the pills just stopped working and they wanted to put me on something stronger, so that was my wake up call. Also, the budesonide had worsened my osteoporosis - highly undesirable! I think if you can be strict with the diet starting now, it will be easier to taper off the pills much sooner than I have been able to. The good news is that I did a very slow taper and now it's been 2 weeks since my last pill. Keeping all my fingers and toes crossed.
I would just say - try not to go hungry or you will feel even more deprived. Eat lots of meat/fish to fill you up. Even snack on it. The first 2 weeks I had super bad carb cravings and I had to teach myself to reach for meat instead. Just so you know, I was a mostly-vegetarian for years so this didn't come easy. It was always whole grains, legumes, fruits & veggies for me. You WILL get used to it, I promise.
My plan is to take the Enterolab testing in another month so I know exactly what I can and can't eat. In my case, it would be great if I could eat cheese again - the thing I miss the most.
Good luck, Erica. Get yourself good and ready for the diet and throw yourself into it. I think you'll be glad you did.
Chris
I was on budesonide and lialda for 4 years and wish to heck that I had known about the diet at the beginning. After a few years, the pills just stopped working and they wanted to put me on something stronger, so that was my wake up call. Also, the budesonide had worsened my osteoporosis - highly undesirable! I think if you can be strict with the diet starting now, it will be easier to taper off the pills much sooner than I have been able to. The good news is that I did a very slow taper and now it's been 2 weeks since my last pill. Keeping all my fingers and toes crossed.
I would just say - try not to go hungry or you will feel even more deprived. Eat lots of meat/fish to fill you up. Even snack on it. The first 2 weeks I had super bad carb cravings and I had to teach myself to reach for meat instead. Just so you know, I was a mostly-vegetarian for years so this didn't come easy. It was always whole grains, legumes, fruits & veggies for me. You WILL get used to it, I promise.
My plan is to take the Enterolab testing in another month so I know exactly what I can and can't eat. In my case, it would be great if I could eat cheese again - the thing I miss the most.
Good luck, Erica. Get yourself good and ready for the diet and throw yourself into it. I think you'll be glad you did.
Chris
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humbird753
- Rockhopper Penguin
- Posts: 1014
- Joined: Mon Nov 28, 2011 4:44 pm
- Location: Wisconsin
Chris - I read your last two posts. So very thorough, and helpful for many here. I agree that simplifying is the key.
Paula
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
humbird753 wrote:Chris - I read your last two posts. So very thorough, and helpful for many here. I agree that simplifying is the key.
Paula
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I wish you luck Erica. I use to be on this forum a lot more often, but I am now a bit more busy and other people have stepped up to help those in need :) I was on the very restricted diet for about 6 months while taking Budesonide ( during that time, I lowered the dose when I started to get a little constipated). Once I was completely off the drug, I was down to one soft stool per day. I was willing to live with that, but then I tried taking an OTC antihistamine and that step seemed to be another piece to the puzzle. My stool solidified. Once that happened, I started to slowly test some foods back in. A little more each day of the tested food until I knew it was OK. Sometimes, it's about QUANTITY. The good news is now that I am over 3 years post Dx, I can eat raw veggies and salad, some types of beans, popcorn, dark chocolate, small quantities of fruit… and if i take an extra antihistamine, I can drink wine with no problems. So, there is light at the end of this tunnel and I hope that it happens quickly for you.
Leah
Leah