I was diagnosed with MC July 2015 but severe symptoms began June 2015. I had been having problems for the past 6 years, had had 2 upper/lower GI's that showed nothing but finally put myself on a gluten free diet and that helped, allowed me to continue to work. But there were days/weeks when even a strict GF wasn't enough and I missed work, too sick to leave home. I finally retired 2 years early and I'm glad now that I did as I could never have continued to work for as bad as the past year has been.
I would say that I've had a couple of months of being able to leave my house and not be afraid of making a mess of my clothes but eating peanut butter to slow down my intestinal track has helped that. Otherwise, I'd never have left my house. I've given up on going out with friends, too afraid of having an accident like the ones I've had away from my house.
When your world revolves around how many times you have diarrhea a day, when you are so tired because you get no sleep because you keep going to the bathroom, when you can't figure out what foods to eat because they all make you sick, you just sit and cry. I try to do that when no one is around to see me feel sorry for myself and I'm doing a good job of that.
I'm 66 years old, divorced, living with an adult daughter who has a very active life. I have no close friends any more because I can't go anywhere. I can't get involved in any activities because I'm afraid of having bathroom accidents when I leave my house. Six years of intestinal problems has taught me never to trust my intestines. If I leave the house, I always know where the restrooms are, take along, changes of clothes, wear adult diapers, wear dark clothes (why, I don't know since poo isn't dark), and just pray I get where I need to go and get back home without an accident. I've managed to go to a couple Broadway productions at the Fox Theatre in Atlanta and have concert tickets for upcoming events. But it is my only outlet.
There must be so many people out there just like me. No one to talk to, no one who really understands what this is like. I'm glad I decided after my last divorce never to date again as I'd never try to date with MC. It just isn't worth it. Life is too messy, disgusting, gross. I hate this but it is what it is. Don't tell me to go see a counselor about this - to what? Talk about poo????? What are all of us supposed to do to support each other when no one understands this except those of us who have this?
MC has killed my social life!!!!!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Gac,
We've all been where you are right now. But there really is light at the end of the tunnel. I was where you were last summer, and now, there's not much that stops me or slows me down. I have had to change my thought from living to eat to just eating to live........sadly, much of our society's events do revolve around food. You can still go out with friends. Eat before you go out or take along some safe foods with you.
My guess is that if gluten free isn't enough that you will need to eliminate the other triggers also (such as dairy, soy, and egg). I don't eat any gluten, soy, or dairy, and the only egg I get now is what is cooked in products (and it doesn't bother me) but I am 11 months in on a very restrictive diet. Several of us sent in labs to Enterolab to find out our food sensitivities. Otherwise, you have to do a full elimination of foods (one at a time).
Also, what supplements are you taking? Are you taking enough vitamin D3? Our body uses a lot of D3 and magnesium and especially during flares.
I would suggest you get a copy of Tex's book (upper right hand corner) and start reading, and read through all the posts on here. We are all family now (joined together by this disease). We understand. Ask lots of questions.
Hang in there! It does get better once you determine what your triggers are.
We've all been where you are right now. But there really is light at the end of the tunnel. I was where you were last summer, and now, there's not much that stops me or slows me down. I have had to change my thought from living to eat to just eating to live........sadly, much of our society's events do revolve around food. You can still go out with friends. Eat before you go out or take along some safe foods with you.
My guess is that if gluten free isn't enough that you will need to eliminate the other triggers also (such as dairy, soy, and egg). I don't eat any gluten, soy, or dairy, and the only egg I get now is what is cooked in products (and it doesn't bother me) but I am 11 months in on a very restrictive diet. Several of us sent in labs to Enterolab to find out our food sensitivities. Otherwise, you have to do a full elimination of foods (one at a time).
Also, what supplements are you taking? Are you taking enough vitamin D3? Our body uses a lot of D3 and magnesium and especially during flares.
I would suggest you get a copy of Tex's book (upper right hand corner) and start reading, and read through all the posts on here. We are all family now (joined together by this disease). We understand. Ask lots of questions.
Hang in there! It does get better once you determine what your triggers are.
Jari
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Jari, thank you for your response. I am taking D3 now, have been taking Magnesium and B12 for a long time. I guess I need to do the Enterolab tests to find out all of the things triggering me since I am eating so very very little as far as variety and it amazes me how sick I can still get after 10 months. My dad had this but was never diagnosed - suffered for 30 years before his death. So now I have it. I just wish there was someone who lived near me that I could talk to. I feel so very alone. Really, who wants to hear about what's wrong with me???? No one. So I don't talk about it. I either don't eat when I go out or take my own food. But because it has been so bad the past two months, I just haven't gone anywhere. Afraid to go out after my accident in the grocery store. Good thing I am single living with my 40 year old single daughter. I only offend myself. I only embarrass myself. I just make myself sad. Not what I had planned for when I retired. I had hoped to travel but that is not going to happen. Already I've canceled two trips this past year as I was too sick to get in a car.
I appreciate your concern and the help of everyone on this site. I would not survive without this. Doctors are no help.
I appreciate your concern and the help of everyone on this site. I would not survive without this. Doctors are no help.
Hi gac. Reading your posts has really brought tears to my eyes as I have felt the same way so many times! As have many others, I'm sure! When I moved to my new neighborhood the nice women here invited me to get together with them for cards, games, etc. I accepted twice and had fun until I ate the snacks ( pre MC diagnosis) and had to leave using a made up excuse such as migraine, feed the dogs or whatever. Who wants to discuss poop with those who don't understand how it affects our lives? Finally, they just quit asking and now I hardly ever see them except when we might be out in the yard. Going shopping for anything was frightening! One of the most depressing things to me was going to the grocery store! I would (and sometimes still do) actually get very sad while shopping for food. My life as I knew it was turned completely upside down! No more ice cream, chiabatta bread, chocolate, cheese (
) corn, all the things I'd loved my whole life! At 66, I felt like the aging process had hit a brick wall that no one told me about! I'm telling you this because you are not alone! Please give yourself the time it takes to adjust to this nastiness! I'm still not completely there but it's much better. I still get depressed but have to really give myself a good talking to that I could be worse! Sometimes I'll eat ice cream knowing what it does to me, but don't care. That's when I'm SO sorry I did it and really, really do care! I have honestly learned so much since my diagnosis, have gotten better and am not afraid to go out anymore (although I do hide a spare pair of my Walmart underwear in my purse)! I have a binder getting full of recipes and articles that I've found helpful and interesting. You will get better, I promise!! It just takes lots of time and learning about your body and when it says "no!). In the meantime, just know that your confinement is not forever! Read this forum and learn everything you can. We are very special people! I finally learned that! I'm so sorry that this was soooo long but your post really touched me and I couldn't seem to stop! Remember, it takes time and work but it's worth it. 
Donna
) corn, all the things I'd loved my whole life! At 66, I felt like the aging process had hit a brick wall that no one told me about! I'm telling you this because you are not alone! Please give yourself the time it takes to adjust to this nastiness! I'm still not completely there but it's much better. I still get depressed but have to really give myself a good talking to that I could be worse! Sometimes I'll eat ice cream knowing what it does to me, but don't care. That's when I'm SO sorry I did it and really, really do care! I have honestly learned so much since my diagnosis, have gotten better and am not afraid to go out anymore (although I do hide a spare pair of my Walmart underwear in my purse)! I have a binder getting full of recipes and articles that I've found helpful and interesting. You will get better, I promise!! It just takes lots of time and learning about your body and when it says "no!). In the meantime, just know that your confinement is not forever! Read this forum and learn everything you can. We are very special people! I finally learned that! I'm so sorry that this was soooo long but your post really touched me and I couldn't seem to stop! Remember, it takes time and work but it's worth it. 
DonnaStill processing after 2 yrs
Hi Gac,
I can tell you really want some relief...firstly can you afford to send off for an Enterolab stool test? If you can I highly recommend it. If you can't then I highly recommend you stop cold turkey eating anything with gluten, dairy, soy and egg in it. Plus check anything you come in contact with....makeup perfumes, vitamins, soaps....everything check it for all the 4 elimination foods. This is a must, a tiny amount can keep you in a flare until the gut has time to heal enough that it doesn't fight itself over a measly spot of egg perhaps.
Get really good amounts of safe Vitamin D3, honestly I was at 43 and am only at 45 with VitD3 right now so my Dr. said to up my D to taking 5000mg twice daily :-) That may seem like a lot but I really believe it when Tex says we do not absorb anything while we are in a flare so it takes even more than we thought it might to give our body support during this time. Magnesium is also very important, if you can get some oil or lotion vitacost.com LifeFlo is a great brand and very affordable too, soak in Epsom salts use the directions on the package. Finally take a moderate amount of Magnesium Chelated Drs Best you can get at Vitacost.com for a good price too.
Most of us with MC/LC/CC can not eat gluten or dairy, some can get away with soy and maybe even some egg. I have to stay away from all 4 food groups due to my test results from Enterolab, so that is what I embarked on the same time your MC began giving you major fits. It has been a full year now, and after restricting myself to bland safe foods (yes it was a mind struggle, but I did it) and yes it seems like we will never be able to eat anything great again....we do and we will.
You can do this, and because you are here talking about it means you really want to be validated and you have the strength and conviction to begin the healing process :-)
A part of me considers you lucky in that you can have certain food just for you and you don't have to worry about cooking all the other stuff the rest of the family still expects you to keep on making when deep down it is pure torture at times to be around some of that food that reminds you of old times.
Also if you have any allergies be sure to take a daily antihistamine, it appears high histamine foods can keep us reacting too. Also eat plenty of meat a few good choices would be Turkey, Chicken, Lamb, Wild games. A good Bone broth is super beneficial and has many healing properties with aminos, it isn't only just good for when we have a cold, it actually soothes the gut too :-)
Hang in there
Hugs
Erica
I can tell you really want some relief...firstly can you afford to send off for an Enterolab stool test? If you can I highly recommend it. If you can't then I highly recommend you stop cold turkey eating anything with gluten, dairy, soy and egg in it. Plus check anything you come in contact with....makeup perfumes, vitamins, soaps....everything check it for all the 4 elimination foods. This is a must, a tiny amount can keep you in a flare until the gut has time to heal enough that it doesn't fight itself over a measly spot of egg perhaps.
Get really good amounts of safe Vitamin D3, honestly I was at 43 and am only at 45 with VitD3 right now so my Dr. said to up my D to taking 5000mg twice daily :-) That may seem like a lot but I really believe it when Tex says we do not absorb anything while we are in a flare so it takes even more than we thought it might to give our body support during this time. Magnesium is also very important, if you can get some oil or lotion vitacost.com LifeFlo is a great brand and very affordable too, soak in Epsom salts use the directions on the package. Finally take a moderate amount of Magnesium Chelated Drs Best you can get at Vitacost.com for a good price too.
Most of us with MC/LC/CC can not eat gluten or dairy, some can get away with soy and maybe even some egg. I have to stay away from all 4 food groups due to my test results from Enterolab, so that is what I embarked on the same time your MC began giving you major fits. It has been a full year now, and after restricting myself to bland safe foods (yes it was a mind struggle, but I did it) and yes it seems like we will never be able to eat anything great again....we do and we will.
You can do this, and because you are here talking about it means you really want to be validated and you have the strength and conviction to begin the healing process :-)
A part of me considers you lucky in that you can have certain food just for you and you don't have to worry about cooking all the other stuff the rest of the family still expects you to keep on making when deep down it is pure torture at times to be around some of that food that reminds you of old times.
Also if you have any allergies be sure to take a daily antihistamine, it appears high histamine foods can keep us reacting too. Also eat plenty of meat a few good choices would be Turkey, Chicken, Lamb, Wild games. A good Bone broth is super beneficial and has many healing properties with aminos, it isn't only just good for when we have a cold, it actually soothes the gut too :-)
Hang in there
Hugs
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
I am fortunate that I do not have to cook for anyone. My daughter cooks for herself but what she cooks really smells awful to me. I don't even like the smell of it and leftover odors are nauseating to me. I'm a fanatic about food odors, can't stand smell of garlic or onions or any strong smelling foods, cooked here or brought into the house. Trash must be emptied immediately and I have Arm & Hammer refrig odor eaters to try to absorb odors. Food odors can trigger my migraines. I want to do the Entorolab testing but wow, the cost of it is difficult when I am retired and on Social Security.
I cannot tolerate white meat chicken/turkey or pork or eggs. I can eat dark meat chicken/turkey and fatty cuts of beef. I'm not much of a lamb lover and I never cook fish at home because of the smell. I never eat wild game so that wouldn't be something I would cook. I hadn't thought about bone broth but that really sounds good to me. My "go to" food for the past 10 months has been oxtails as I love them and my tummy loves them. The only veggies I can tolerate are white potatoes and carrots but not every day. If I want to leave my house, I resort to peanut butter on GF crackers or bread to slow down my intestines and if I know I'm going to a concert or something, I have to eat nothing but the peanut butter/bread for about 3 or 4 days to really slow down my intestines.
I have been GF for 6 years, DF for 10 months, veggie/fruit free for 10 months, and have slowly added in all the Magnesium, Vit D, Vit B12, daily antihistamines, etc. that I needed to help me. Been on Budesonide at 1 to 3 pills a day for most of the 10 months, with a no pills gap of about 3 months.
Just don't trust myself to go anywhere. Because this has been a problem for so long, even before diagnosis last July, I really just feel so cut off from people. Every activity I ever did or would ever want to do would require that I be around food and beverages, be where I might not be near a restroom or where I might not make it to the restroom in time, go where I can never eat or drink whatever is offered to me at someone's home, etc. No one invites me anywhere any more and so I no longer have any friends. I am completely cut off from people who do not understand how people with MC could still have diarrhea this long and this frequently and this seriously and this uncontrollably. And they don't want to hear about it. So how did I get to be 66 years old with no friends? I look back and remember having so many friends and talking on the phone and going places with my friends. But life just changed. Many things in my life changed, not just MC, but this is the one part that I really can't control.
I am not ready to give up and move into an assisted living facility for the poo people. Poo Central Georgia!!!!!!! No, but I can't even work in the yard yet here at home because of MC and that makes me mad. My doctor asks me why I don't get some exercise, go swimming, start walking in my neighborhood. Oh, right, get in the public pool and have one of my accidents???? Or walk in my neighborhood and have an attack a couple blocks from home and have to walk back home like that????? No, I'm just hoping to be able to go out and pull weeds in the flower bed sometime soon. So don't make a reservation for me yet at Poo Central Georgia.
I cannot tolerate white meat chicken/turkey or pork or eggs. I can eat dark meat chicken/turkey and fatty cuts of beef. I'm not much of a lamb lover and I never cook fish at home because of the smell. I never eat wild game so that wouldn't be something I would cook. I hadn't thought about bone broth but that really sounds good to me. My "go to" food for the past 10 months has been oxtails as I love them and my tummy loves them. The only veggies I can tolerate are white potatoes and carrots but not every day. If I want to leave my house, I resort to peanut butter on GF crackers or bread to slow down my intestines and if I know I'm going to a concert or something, I have to eat nothing but the peanut butter/bread for about 3 or 4 days to really slow down my intestines.
I have been GF for 6 years, DF for 10 months, veggie/fruit free for 10 months, and have slowly added in all the Magnesium, Vit D, Vit B12, daily antihistamines, etc. that I needed to help me. Been on Budesonide at 1 to 3 pills a day for most of the 10 months, with a no pills gap of about 3 months.
Just don't trust myself to go anywhere. Because this has been a problem for so long, even before diagnosis last July, I really just feel so cut off from people. Every activity I ever did or would ever want to do would require that I be around food and beverages, be where I might not be near a restroom or where I might not make it to the restroom in time, go where I can never eat or drink whatever is offered to me at someone's home, etc. No one invites me anywhere any more and so I no longer have any friends. I am completely cut off from people who do not understand how people with MC could still have diarrhea this long and this frequently and this seriously and this uncontrollably. And they don't want to hear about it. So how did I get to be 66 years old with no friends? I look back and remember having so many friends and talking on the phone and going places with my friends. But life just changed. Many things in my life changed, not just MC, but this is the one part that I really can't control.
I am not ready to give up and move into an assisted living facility for the poo people. Poo Central Georgia!!!!!!! No, but I can't even work in the yard yet here at home because of MC and that makes me mad. My doctor asks me why I don't get some exercise, go swimming, start walking in my neighborhood. Oh, right, get in the public pool and have one of my accidents???? Or walk in my neighborhood and have an attack a couple blocks from home and have to walk back home like that????? No, I'm just hoping to be able to go out and pull weeds in the flower bed sometime soon. So don't make a reservation for me yet at Poo Central Georgia.
Hi G.
Consider switching from peanut butter to almond butter or cashew butter. Peanut butter is from a legume (soy) which can be a problem for us.
Also, I do better without gluten free bread and without gluten free crackers. I think there are too many ingredients for me. I have sweet potato, the white or red potatos (russets/bake potatoes can be problematic for us and tougher to digest so I try to avoid), white rice or white rice tinkyada pasta (only has rice as ingredient) for starches.
I've never had the rice cakes but they might have less ingredients than the GF bread and the GF crackers. Perhaps consider almond butter or cashew butter
on rice cakes.
We had another member who was so sick when she came on that and had been for 20 years that she could not go to her daughters wedding. She ate just protein for about 6 months and is in remission now. Maybe she will chime in. I consistently do better with more protein.
I do have GF bread and GF crackers here and there, like once a month or so but they are not the bedrock of my food intake. All of my meals are anchored with some kind of protein.
Hang in there. IT took me 2 years to get into remission (at age 50).
If budesonide helps can you hang on higher dose of budesonide for awhile for things to stabilize, i.e. so you can get out of the house? Like hang on two pills a day or three pills a day? Mayo Clinic is ok with long term use of budesonide and we can pull the studies if you need them for your doc.
Are you on any other prescription meds that might prevent remission? If so you might want to interact with Tex even privately.
Brandy
Consider switching from peanut butter to almond butter or cashew butter. Peanut butter is from a legume (soy) which can be a problem for us.
Also, I do better without gluten free bread and without gluten free crackers. I think there are too many ingredients for me. I have sweet potato, the white or red potatos (russets/bake potatoes can be problematic for us and tougher to digest so I try to avoid), white rice or white rice tinkyada pasta (only has rice as ingredient) for starches.
I've never had the rice cakes but they might have less ingredients than the GF bread and the GF crackers. Perhaps consider almond butter or cashew butter
on rice cakes.
We had another member who was so sick when she came on that and had been for 20 years that she could not go to her daughters wedding. She ate just protein for about 6 months and is in remission now. Maybe she will chime in. I consistently do better with more protein.
I do have GF bread and GF crackers here and there, like once a month or so but they are not the bedrock of my food intake. All of my meals are anchored with some kind of protein.
Hang in there. IT took me 2 years to get into remission (at age 50).
If budesonide helps can you hang on higher dose of budesonide for awhile for things to stabilize, i.e. so you can get out of the house? Like hang on two pills a day or three pills a day? Mayo Clinic is ok with long term use of budesonide and we can pull the studies if you need them for your doc.
Are you on any other prescription meds that might prevent remission? If so you might want to interact with Tex even privately.
Brandy
Hi there..........
Like you, I spent most of last summer indoors afraid to leave the house. My husband would literally drag me out on the weekends and make me go places with him. I lost so much self confidence and was afraid to go anywhere.
But the combination of diet changes (I ate chicken and rice and 1 banana) 3-4 times a day for about 2 months before I added anything else back in and 9 mg of Budesonide stopped the D in a short amount of time. Once that happened, each time I went out, I gained a little more self confidence and didn't always feel like I needed to know where the nearest bathroom was.
Am I still afraid? You bet I am. I think once you've ever experienced that, you NEVER forget. But, I feel so much better now and I'm not willing to let MC dictate my life for me. I'm planning to go to Vegas with my husband in a couple of weeks and I'm very anxious, but I am determined to go and have a good time.
You'll get there. Give it time. It's not an easy process but in time, you'll feel better.
Like you, I spent most of last summer indoors afraid to leave the house. My husband would literally drag me out on the weekends and make me go places with him. I lost so much self confidence and was afraid to go anywhere.
But the combination of diet changes (I ate chicken and rice and 1 banana) 3-4 times a day for about 2 months before I added anything else back in and 9 mg of Budesonide stopped the D in a short amount of time. Once that happened, each time I went out, I gained a little more self confidence and didn't always feel like I needed to know where the nearest bathroom was.
Am I still afraid? You bet I am. I think once you've ever experienced that, you NEVER forget. But, I feel so much better now and I'm not willing to let MC dictate my life for me. I'm planning to go to Vegas with my husband in a couple of weeks and I'm very anxious, but I am determined to go and have a good time.
You'll get there. Give it time. It's not an easy process but in time, you'll feel better.
Jari
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Hi G.
This is a support group for microscopic colitis. Believe me, we get it. We had one of our founders from a the precourser support group to this one who worked in a University Library. She had an accident in the foyer of her work place. The University sent a hazmat team in to clean up. Another one of our founders was running in her neighborhood and had to step behind some trees to poo behind some trees has cars were buzzing by. Believe me we get it.
I'm also a big believer of the few food regimen that Jari mentions:
Baby steps on getting out. Hang in lounge chair in your front yard, read books, talk to neighbors. Walk 200 yards down the street several times a day. Talk to random neighbors. Weed the flower bed.
Pre MC I ate dinner out 4 nights a week and lunch out 5 x per week. Now I eat dinner out maybe 3 x per year and lunch never. Yup my life is different. I now host a ladies hiking club and we hike different north florida trails once every two weeks. I have people over to my place for meals. I cook or covered dish. I took three friends to my sisters condo for 10 days in Montana. We cooked at the condo and hiked, rafted, fished every day. I'm a much better cook than pre MC.
My town has an in person support group for crohns/UC/colitis meeting once a month. I'm thinking Atlanta might have something. Perhaps check into something like that to meet new people who "get it." Since I've had MC I've learned there are more folks out there than you think that "get it" that have crohns/UC/celiac and even IBS who get it. Due to the ick factor colitis is a hidden disease and just not talked about.
Baby steps on the friend thing.
Brandy
This is a support group for microscopic colitis. Believe me, we get it. We had one of our founders from a the precourser support group to this one who worked in a University Library. She had an accident in the foyer of her work place. The University sent a hazmat team in to clean up. Another one of our founders was running in her neighborhood and had to step behind some trees to poo behind some trees has cars were buzzing by. Believe me we get it.
I'm also a big believer of the few food regimen that Jari mentions:
The few food regimen really helped me. Keep it simple for awhile.But the combination of diet changes (I ate chicken and rice and 1 banana) 3-4 times a day for about 2 months before I added anything else back in and 9 mg of Budesonide stopped the D
Baby steps on getting out. Hang in lounge chair in your front yard, read books, talk to neighbors. Walk 200 yards down the street several times a day. Talk to random neighbors. Weed the flower bed.
Pre MC I ate dinner out 4 nights a week and lunch out 5 x per week. Now I eat dinner out maybe 3 x per year and lunch never. Yup my life is different. I now host a ladies hiking club and we hike different north florida trails once every two weeks. I have people over to my place for meals. I cook or covered dish. I took three friends to my sisters condo for 10 days in Montana. We cooked at the condo and hiked, rafted, fished every day. I'm a much better cook than pre MC.
My town has an in person support group for crohns/UC/colitis meeting once a month. I'm thinking Atlanta might have something. Perhaps check into something like that to meet new people who "get it." Since I've had MC I've learned there are more folks out there than you think that "get it" that have crohns/UC/celiac and even IBS who get it. Due to the ick factor colitis is a hidden disease and just not talked about.
Baby steps on the friend thing.
Brandy
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That's me Brandy is talking about. I missed my daughter's wedding on St Lucia. I was afraid to step out my door to bring the dog out. Getting on a plane and flying to St Lucia was out of the question. I had been sick for all of my adult life (and I was over 60 when I joined this forum) but what brought me to this site was when it went from difficult but manageable to totally unmanageable. I would guess that I was in the bathroom at least 30 times a day. The only thing that would stop it was 6 Immodium and that only lasted until I tried to eat something. I found this site and immediately reduced my diet to something I thought might be safe, ground beef, and ate only that. I did the Enterolab testing and found that beef might be a problem for me so I changed to ground lamb. I also cut out everything I tested positive for on the Enterolab test, which meant virtually everything. I did a few weeks of ground lamb only, then ground lamb and kale chips. I stayed with that for a long time. I still do not eat any grains, any dairy, any soy or other legumes, any eggs, and any chicken, and have beef very seldom and it's been over 4 years. I have been able to add back in a lot of vegetables. I never go out to eat but am quite satisfied with my home cooked limited diet.brandy wrote:Hi G.
We had another member who was so sick when she came on that and had been for 20 years that she could not go to her daughters wedding. She ate just protein for about 6 months and is in remission now. Maybe she will chime in. I consistently do better with more protein.
On the plus side things are pretty close to normal. I now take an hour long walk every morning. In fact, since I sold my car I have been walking everywhere. I go to the grocery store without fear. I don't worry about the location of bathrooms. Given where I started from it's miraculous. I was home bound too. I'm not any more. Figuring out what I could and couldn't eat was the key as was sticking to a small number of safe foods for a long time. I would much rather be able to leave the house than eat a large variety of foods. The anxiety has been harder to get rid of than the intestinal symptoms. I still find myself nervous about leaving the house but I have learned to ignore it.
There is a way out of this. It takes hard work and diligence but it can be done or at least I was able to do it and so have many other people on this forum. The more disciplined you are the more likely you are to succeed.
Jean
Thank you to all of you. I am not the first nor the last to have MC, just feeling so alone and yes, feeling sorry for myself, which I know all of you have experienced. This morning it is 10:30 and I've been in the bathroom 6 times. OK, must make a switch on the foods again. I have been able to tolerate chicken thighs in the past so will go get those out of freezer and boil those up and eat with white potato which I can tolerate. I cannot eat rice at all - have tried multiple times and maybe it is too rough to digest where the potato is so mushy and requires nothing of my intestines.
I realized today that the Vit D3 that my daughter bought for me has soy in it and that is a NO NO so will stop those until I can find soy free D3. I will stop the dry corn chex cereal I was eating as a snack. No gluten free bread or crackers or cookies. My problem is figuring out what to eat if all I eat is chicken thighs and white potatoes. Is that what I eat 24/7, for snacks, for breakfast, middle of the night snacks, etc.????????? I am hungry all the time because food doesn't stick with me.
I will look immediately for colitis/IBS support group. Stupid me never even thought of that and as big as Atlanta is there must be something here. Thanks a million for that great suggestion.
My worst accident was in the grocery store and luckily I made it to the bathroom before it fell out of my pants but there I was trying to clean myself up - in the MEN'S ROOM, as the women's was occupied (I laugh about this in light of all the arguments about transgender restrooms and I will use whatever restroom is available when it is an emergency). I was able to clean myself up somewhat, check out of the store, make it home, unload my car (had to do that because it was so hot outside and I had cold food in the car), and then could strip off my clothes and take a shower. But it was after I was all cleaned up that I fell apart and cried. And I realized how much worse it could have been if poo had fallen out of my clothes on the floor of the store. Yes, the Hazmat team would have been called there too. We do feel like walking "Hazmat Disasters Waiting to Happen".
Missing your daughter's wedding, Jean, must have been so incredibly sad and disheartening. I almost missed my daughter's 40th birthday party a couple weeks ago and barely fought my way thru the evening. But a wedding!!!!! We feel life is rushing by us and we can never reclaim the days and years. I had so looked forward to retirement, planned things I wanted to do. I had planned to work until age 65 but had to stop at 63 because of diarrhea and pain. Now I've spent all my time sick, in the bathroom, stuck at home, or recovering from surgery. My one enjoyment is reading and I try to find educational shows on TV to keep my brain working. I am still not able to work in the yard without having to run for the house.
In the past year I have missed 2 wonderful Broadway shows here in Atlanta because of MC (we are season ticket holders) and I do all I can to try to prepare myself to go to these shows by but I still can't always go one hour from home for a 3 hour show if it has been a bad day.
This site is my lifeline - couldn't make it without it and every word and thought I receive from all of you helps me tremendously.
I realized today that the Vit D3 that my daughter bought for me has soy in it and that is a NO NO so will stop those until I can find soy free D3. I will stop the dry corn chex cereal I was eating as a snack. No gluten free bread or crackers or cookies. My problem is figuring out what to eat if all I eat is chicken thighs and white potatoes. Is that what I eat 24/7, for snacks, for breakfast, middle of the night snacks, etc.????????? I am hungry all the time because food doesn't stick with me.
I will look immediately for colitis/IBS support group. Stupid me never even thought of that and as big as Atlanta is there must be something here. Thanks a million for that great suggestion.
My worst accident was in the grocery store and luckily I made it to the bathroom before it fell out of my pants but there I was trying to clean myself up - in the MEN'S ROOM, as the women's was occupied (I laugh about this in light of all the arguments about transgender restrooms and I will use whatever restroom is available when it is an emergency). I was able to clean myself up somewhat, check out of the store, make it home, unload my car (had to do that because it was so hot outside and I had cold food in the car), and then could strip off my clothes and take a shower. But it was after I was all cleaned up that I fell apart and cried. And I realized how much worse it could have been if poo had fallen out of my clothes on the floor of the store. Yes, the Hazmat team would have been called there too. We do feel like walking "Hazmat Disasters Waiting to Happen".
Missing your daughter's wedding, Jean, must have been so incredibly sad and disheartening. I almost missed my daughter's 40th birthday party a couple weeks ago and barely fought my way thru the evening. But a wedding!!!!! We feel life is rushing by us and we can never reclaim the days and years. I had so looked forward to retirement, planned things I wanted to do. I had planned to work until age 65 but had to stop at 63 because of diarrhea and pain. Now I've spent all my time sick, in the bathroom, stuck at home, or recovering from surgery. My one enjoyment is reading and I try to find educational shows on TV to keep my brain working. I am still not able to work in the yard without having to run for the house.
In the past year I have missed 2 wonderful Broadway shows here in Atlanta because of MC (we are season ticket holders) and I do all I can to try to prepare myself to go to these shows by but I still can't always go one hour from home for a 3 hour show if it has been a bad day.
This site is my lifeline - couldn't make it without it and every word and thought I receive from all of you helps me tremendously.
G.
It sounds like you have 3 safe meats. Rutabagas, turnips, beets, sweet potatos are some other options. Eliminate anything with an ingredient list while you are struggling. Hone in on what seem to be 3 or 4 safe foods and eat them 5-6 times per day (for calories). Stick to this for 6-8 weeks like Jari did. You should see improvement. Keep it simple. Few food regimen is best early on. I can eat a broad category of foods now but for 8 weeks I ate the same 3 foods and then I kicked into "softserve" once a day. Life was much more manageable at that point.
Some can tolerate bananas and avacados.
It sounds like you have 3 safe meats. Rutabagas, turnips, beets, sweet potatos are some other options. Eliminate anything with an ingredient list while you are struggling. Hone in on what seem to be 3 or 4 safe foods and eat them 5-6 times per day (for calories). Stick to this for 6-8 weeks like Jari did. You should see improvement. Keep it simple. Few food regimen is best early on. I can eat a broad category of foods now but for 8 weeks I ate the same 3 foods and then I kicked into "softserve" once a day. Life was much more manageable at that point.
Some can tolerate bananas and avacados.
BACON!!!!!!! I love bacon!!!!! I hadn't even thought of that as I'm still thinking like a fat person, a person who isn't supposed to eat bacon. But at this point, I need food, food that will stick with me, food I like, food that tastes good so I don't feel hungry all the time. I noticed that the fattier the beef is that I eat, the better I feel. Which is why white meat chicken doesn't work for me. Ground chicken and turkey don't work either. I used coconut oil to make GF brownies the other day as I was so hungry and felt OK after those. Will use coconut oil whenever I can, same with butter.
I need to start a list of foods that work, foods that don't, although that seems to be a flexible list. Some foods that I was able to eat 6 months ago I cannot eat now as I am going thru a flare-up right now.
Will I ever get to the point of being able to drink any fruit juices? I love fruit juice and miss it so much. I never drink anything but water and coffee and I am missing other beverages.
I need to start a list of foods that work, foods that don't, although that seems to be a flexible list. Some foods that I was able to eat 6 months ago I cannot eat now as I am going thru a flare-up right now.
Will I ever get to the point of being able to drink any fruit juices? I love fruit juice and miss it so much. I never drink anything but water and coffee and I am missing other beverages.
Eating animal fat will not make us fat. Eating carbs (especially grains) will. The USDA made that major mistake with their food pyramid back in the 1980s and everyone fell for it. Researchers are only recently beginning to publish studies showing the truth about fats and carbs but there are still a lot of ignorant "experts" around who insist that fats are unhealthy. It's grains that are unhealthy, not animal fat.
Rather than eating butter (which is loaded with casein, the protein in milk that causes us to react), use ghee, which is refined butter (butter without the casein).
Most of us react to citric acid and the fructose in fruit and fruit juices. But after you have been in remission for a while you should be able to tolerate it again. Look for Virgil's Root Beer. It's safe for most of us. It's a little pricy, but I used it as an occasional treat when I was recovering.
It's possible you might be able to drink limited amounts of diluted fruit juices, but most of us do better if we avoid them until after we are in remission.
Tex
Rather than eating butter (which is loaded with casein, the protein in milk that causes us to react), use ghee, which is refined butter (butter without the casein).
Most of us react to citric acid and the fructose in fruit and fruit juices. But after you have been in remission for a while you should be able to tolerate it again. Look for Virgil's Root Beer. It's safe for most of us. It's a little pricy, but I used it as an occasional treat when I was recovering.
It's possible you might be able to drink limited amounts of diluted fruit juices, but most of us do better if we avoid them until after we are in remission.
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.