Oh my gosh....
Moderators: Rosie, JFR, Gabes-Apg, grannyh, Mars, starfire, Polly, Joefnh
Oh my gosh....
I think I know what you mean when you say Normans....or whatever. I have had two mornings without gut wrenching visits to the bathroom. I was just about to bump Endocort up to three and I did for 2 days when I keep thinking more about the diet like you advise. I have had cooked Vegs, salmon, potatoes, rice, bananas, applesauce, water and one cup of black coffee.....I had been on 2 Endocort for a month and was not getting better....since this is my fourth go-around with CC....Third time in a yr. - I was at my wits end. If you guys are correct I will get on a plane and personally come and kiss your feet (feeling dramatic)!!!!! This is my 5th day of this diet and I see changes. I am so hopeful.....how long do you suggest I stay at this level? Just looking at the future.....I know I should take it a day at a time and not rush things...just wondering. Also, I think I read Where Tex said we should increase vit D - mine was low last yr...how much do you take and also is there a gluten free vitamin - I am afraid to touch anything!! How about calcium? Again....thanks to all of you for helping me see the light of day!
Everything will be ok in the end, if it's not ok, it's not the end.
Hi Jean,
Good for you. It's nice to read that you are doing better already. The bad news is that it takes a long time for the gut to heal. I stayed on a strict, very limited diet for about a year and a half before I was able to successfully begin to add any foods back into my diet. But we are all different, of course.
I'm currently taking 5,500 IU of vitamin D daily (500 in a multivitamin, and 5,000 in a vitamin D3 supplement). During the summer I cut that back to about 3,500 IU, because I live in sunny Central Texas. I don't have to avoid soy, so I'm hoping that someone else can advise you on safe brands of supplements.
Tex
Good for you. It's nice to read that you are doing better already. The bad news is that it takes a long time for the gut to heal. I stayed on a strict, very limited diet for about a year and a half before I was able to successfully begin to add any foods back into my diet. But we are all different, of course.
I'm currently taking 5,500 IU of vitamin D daily (500 in a multivitamin, and 5,000 in a vitamin D3 supplement). During the summer I cut that back to about 3,500 IU, because I live in sunny Central Texas. I don't have to avoid soy, so I'm hoping that someone else can advise you on safe brands of supplements.
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 that would make a good survey question. How long of a period from when you joined this site to when you began to feel better? I would have to say it was 1-2 years before I achieved any length of remission. First I used Entocort and then I spent a long time fine-tuning my safe food list and learning to shop and cook in a new way. It also took a while for certain cravings to recede, like for tomatoe sauce (i am Italian) and cheese (which I did love!). I have to say to Newbies, don't anyone give up because it's all worth it in the long run! 
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Hi Cory,
I'm kind of afraid that if newbies see right off the bat, how long it takes, they may immediately decide that it's not worth it and move on, because every newly-diagnosed patient wants (and expects) instant relief.
You can see many members coming back here to adopt the diet, 2, 3, 4, or more years after they originally joined (or originally lurked without joining). But originally, they weren't willing to commit to a rigid diet, so they spent several years unsuccessfully searching for the Holy Grail (a quick, easy cure for MC). Eventually, many of them decide that the diet is worth it after all, to get their life back.
Tex
I'm kind of afraid that if newbies see right off the bat, how long it takes, they may immediately decide that it's not worth it and move on, because every newly-diagnosed patient wants (and expects) instant relief.
You can see many members coming back here to adopt the diet, 2, 3, 4, or more years after they originally joined (or originally lurked without joining). But originally, they weren't willing to commit to a rigid diet, so they spent several years unsuccessfully searching for the Holy Grail (a quick, easy cure for MC). Eventually, many of them decide that the diet is worth it after all, to get their life back.
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.
Jean,
I was diagnosed a year ago with MC. I lurked on this site for several months before I committed to diet changes because I didn't want any drugs.
So, it's been over 6 months since I have been GF, DF, SF, & EF. I also tested + for all foods on Enterolab, so it's been quite an experience with my diet. I had to stop taking all my supplements, and I only take Allegra right now. My system is taking longer to heal, and I just have to accept and roll with it.
I tried to add a new food last week, and now I know that I still have a ways to go! So, I will continue with my 7 safe foods for a while.
The people on this site are so supportive, especially when no one around you understands the depth of what you are going through.
Take it one day at a time.
I was diagnosed a year ago with MC. I lurked on this site for several months before I committed to diet changes because I didn't want any drugs.
So, it's been over 6 months since I have been GF, DF, SF, & EF. I also tested + for all foods on Enterolab, so it's been quite an experience with my diet. I had to stop taking all my supplements, and I only take Allegra right now. My system is taking longer to heal, and I just have to accept and roll with it.
I tried to add a new food last week, and now I know that I still have a ways to go! So, I will continue with my 7 safe foods for a while.
The people on this site are so supportive, especially when no one around you understands the depth of what you are going through.
Take it one day at a time.
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
LC Oct. 2012
MTHFR gene mutation and many more....
Jean,
Please don't be discouraged. That happens to almost all of us. Recovery is not a straight-line process. It's a process of 2 steps forward, and 1 step back. And occasionally it seems more like 1 step forward and 2 steps back. But perseverance pays off, and eventually we get there.
Tex
Please don't be discouraged. That happens to almost all of us. Recovery is not a straight-line process. It's a process of 2 steps forward, and 1 step back. And occasionally it seems more like 1 step forward and 2 steps back. But perseverance pays off, and eventually we get there.
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.
slow and steady will win this race!
Jean,
I took Entocort for around 5 months and it was a life saver for me--at least it helped me get back on my feet while I figured diet out and it helped me be able to work. My first big flare was so huge I was flat on my back with the flu-like symptoms and such intense nausea, for weeks. Luckily I had a diagnosis in 6 weeks. I had my colonoscopy in the morning, was told by my surgeon that he suspected lymphocytic colitis based on my symptoms, I came home, found this site, saw people were in remission from diet changes and I never looked back. I had no regrets then and I have none now. I was absolutely rigid on my diet, had the Enterolab testing, and kept rotating the same 6-7 foods, avoiding fat, sugar, fiber, acid and caffeine in addition to gluten, soy, dairy, and eventually eggs. I kept a daily food and poop diary for over a year. In the summer of 2012 I started acupuncture and that polished off the last of the morning nausea I was having. After a year and a half i was feeling good but still had some motility issues that were affecting my life. My doc added 10mg of Amitripyline which helped immensely. This summer was the 2 year mark and somewhere in August I really turned the corner. In the last 12 weeks I have not had one day that I couldn't make it to work or had to come home from work due to LC symptoms. And trust me, I've had some stressful days. I am now able to make plans and feel confident I will be able to keep them, and not feel like crap while I'm there. It is a lot of sacrifices but I'm getting quality back in my life now. You will too.
I don't know how people can ignore the diet aspects of this disease. I honestly thought I was going to be on disability as sick as I was the first 6 months, with the weakness, rapid weight loss, dizziness, and fatigue. I'm just grateful to have been able to get to this point. As everyone else here has said, hang in there. It's worth it, and frankly it's the only way to heal.
Carol
I took Entocort for around 5 months and it was a life saver for me--at least it helped me get back on my feet while I figured diet out and it helped me be able to work. My first big flare was so huge I was flat on my back with the flu-like symptoms and such intense nausea, for weeks. Luckily I had a diagnosis in 6 weeks. I had my colonoscopy in the morning, was told by my surgeon that he suspected lymphocytic colitis based on my symptoms, I came home, found this site, saw people were in remission from diet changes and I never looked back. I had no regrets then and I have none now. I was absolutely rigid on my diet, had the Enterolab testing, and kept rotating the same 6-7 foods, avoiding fat, sugar, fiber, acid and caffeine in addition to gluten, soy, dairy, and eventually eggs. I kept a daily food and poop diary for over a year. In the summer of 2012 I started acupuncture and that polished off the last of the morning nausea I was having. After a year and a half i was feeling good but still had some motility issues that were affecting my life. My doc added 10mg of Amitripyline which helped immensely. This summer was the 2 year mark and somewhere in August I really turned the corner. In the last 12 weeks I have not had one day that I couldn't make it to work or had to come home from work due to LC symptoms. And trust me, I've had some stressful days. I am now able to make plans and feel confident I will be able to keep them, and not feel like crap while I'm there. It is a lot of sacrifices but I'm getting quality back in my life now. You will too.
I don't know how people can ignore the diet aspects of this disease. I honestly thought I was going to be on disability as sick as I was the first 6 months, with the weakness, rapid weight loss, dizziness, and fatigue. I'm just grateful to have been able to get to this point. As everyone else here has said, hang in there. It's worth it, and frankly it's the only way to heal.
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
Thanks everyone
You guys are really helpful. I had only talked to one other person who had MC before you. She worked in the dr.'s office and Endocort "cured" her...that's what I thought 3 years ago until it came back last year and the battle began. I don't understand why there isn't more education for us. I see where my city is having a Crohn's and UC walk.....how come mc is left out???? Perhaps I am being overly sensitive like the girl that didn't get asked to dance at the prom!!! LOL
Jean
You guys are really helpful. I had only talked to one other person who had MC before you. She worked in the dr.'s office and Endocort "cured" her...that's what I thought 3 years ago until it came back last year and the battle began. I don't understand why there isn't more education for us. I see where my city is having a Crohn's and UC walk.....how come mc is left out???? Perhaps I am being overly sensitive like the girl that didn't get asked to dance at the prom!!! LOL
Jean
Everything will be ok in the end, if it's not ok, it's not the end.
Jean,
The national and international Crohn's and colitis support organizations are in the business of collecting contributions to support their organization and their cause, so they go where the money is. They pretty much ignore MC because so few people in the general population have ever even heard of it.
It's unfortunate, but they don't allocate any money for MC research or education because they don't believe that they could recover such funding through contributions. And that's like a self-fulfilling prophecy, because by choosing to ignore the disease, they will never be able to collect any money to use for that purpose.
It's kinda like the situation with the GI specialists. For decades, they considered MC to be a rare disease of older ladies. As a result, very few men, and precious few younger women were ever biopsied so that MC might be diagnosed. It was a self-fulfilling prophecy, because by failing to search for the disease in other patients, the disease remained "rare", and a disease of "older women" in the eyes of closed-minded GI docs.
Tex
The national and international Crohn's and colitis support organizations are in the business of collecting contributions to support their organization and their cause, so they go where the money is. They pretty much ignore MC because so few people in the general population have ever even heard of it.
It's unfortunate, but they don't allocate any money for MC research or education because they don't believe that they could recover such funding through contributions. And that's like a self-fulfilling prophecy, because by choosing to ignore the disease, they will never be able to collect any money to use for that purpose.
It's kinda like the situation with the GI specialists. For decades, they considered MC to be a rare disease of older ladies. As a result, very few men, and precious few younger women were ever biopsied so that MC might be diagnosed. It was a self-fulfilling prophecy, because by failing to search for the disease in other patients, the disease remained "rare", and a disease of "older women" in the eyes of closed-minded GI docs.
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.