Hello everyone,
I am so grateful to have found this group! I've had MC since about 2007, only recently got diagnosed after struggling for so long (and getting so many tests done over the years). I've basically had very little relief, and I'm feeling desperate these days. I don't want to take steroids, and it seems I've tried everything with diet...I'm wondering what percentage of people typically recover, and I'm also wondering if anyone has experience with surgery. This disease has really impacted my quality of life, and I'm really desperate. Thank you!!
Surgery?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Re: Surgery?
Welcome to the group. Most of us are able to keep MC in remission by following a squeaky clean diet that totally avoids all of our food sensitivities that cause our immune system to produce antibodies. A small percentage of us, probably somewhere in the range of 3 to 4% of us, have to take a small maintenance dose of budesonide in addition to carefully following our diet, in order to keep the disease in remission. Of those who take budesonide, a few have to take a single 3 mg capsule budesonide per day, while others are able to wean down to as little as a single capsule every sixth or seventh day or so.
But the main requirement is to discover all our food sensitivities, and do our own cooking, in order to keep the disease in remission. Published research shows that at least half of the meals certified gluten-free by restaurants, are cross contaminated by gluten. Many choose as I do, to never eat out.
The medical literature continues to mistakenly claim that a colectomy will resolve MC. I've seen several cases where that was attempted, but I have never seen a successful case where the surgery actually eliminated MC. I personally have a colectomy. My father's side of the family has a genetic defect that causes some males in the family to experience massive colonic bleeding somewhere after their 50th birthday. At the age of 69, I woke up on February 10 of 2010 bleeding like a stuck pig. By the time I got to the emergency room, I had already lost more than a pint of blood. But the bleeding stopped soon after I arrived, so I was put in an intensive care room, where my bleeding could be monitored if it started again.
By late afternoon, my doctors decided that I could probably go home, but by then it was meal time, and a food service employee showed up with a plate of food, so I decided to eat before I left. As soon as I started eating, the bleeding resumed. I had already told the surgeons that both my father and one of my uncles had died in a hospital — they had bled to death. Before my father died, his surgeons had removed half his colon, which they thought would solve the problem. It didn't. After giving him 113 pints of blood, he bled to death anyway. So I had instructed my surgeons to remove my entire colon, if they had to operate.
So as soon as my bleeding resumed, I was prepped and rolled into the operating room, and they proceeded to remove my colon, my cecum, and about 7 inches of my terminal ileum. I was left with an ileostomy. I was bleeding so fast that they couldn't even add blood fast enough into a carotid artery in my neck, so they had to work fast, and end the surgery sooner than they wanted, because I was running out of blood, and my heart was showing signs of distress, so they were afraid I might have a heart attack.
By some miracle, I survived. My MC started relatively slowly, with occasional reactions, somewhere in 1998. In early 2000, the severe watery diarrhea started, and wouldn't stop, so I eventually caved in and went to my doctor. To cut to the chase, I can tell you based on personal experience that a colectomy does not resolve MC symptoms. I still have to meticulously avoid all the same foods, in order to keep MC in remission. I've been accidentally exposed to cross-contamination a few times when I attempted to eat at parties held at restaurants, where I was assured that the food was gluten, casein, and soy-free. I reacted, and got sick, anyway. I think the main problem is, unless you have this disease, you can't appreciate how meticulous our diet must be, in order to prevent any reactions. So now I never eat away from home. And my life is much more enjoyable. If I go to any social event, I don't eat anything there, ever.
I hope this helps. Again, welcome aboard, and please feel free to ask anything.
Tex
But the main requirement is to discover all our food sensitivities, and do our own cooking, in order to keep the disease in remission. Published research shows that at least half of the meals certified gluten-free by restaurants, are cross contaminated by gluten. Many choose as I do, to never eat out.
The medical literature continues to mistakenly claim that a colectomy will resolve MC. I've seen several cases where that was attempted, but I have never seen a successful case where the surgery actually eliminated MC. I personally have a colectomy. My father's side of the family has a genetic defect that causes some males in the family to experience massive colonic bleeding somewhere after their 50th birthday. At the age of 69, I woke up on February 10 of 2010 bleeding like a stuck pig. By the time I got to the emergency room, I had already lost more than a pint of blood. But the bleeding stopped soon after I arrived, so I was put in an intensive care room, where my bleeding could be monitored if it started again.
By late afternoon, my doctors decided that I could probably go home, but by then it was meal time, and a food service employee showed up with a plate of food, so I decided to eat before I left. As soon as I started eating, the bleeding resumed. I had already told the surgeons that both my father and one of my uncles had died in a hospital — they had bled to death. Before my father died, his surgeons had removed half his colon, which they thought would solve the problem. It didn't. After giving him 113 pints of blood, he bled to death anyway. So I had instructed my surgeons to remove my entire colon, if they had to operate.
So as soon as my bleeding resumed, I was prepped and rolled into the operating room, and they proceeded to remove my colon, my cecum, and about 7 inches of my terminal ileum. I was left with an ileostomy. I was bleeding so fast that they couldn't even add blood fast enough into a carotid artery in my neck, so they had to work fast, and end the surgery sooner than they wanted, because I was running out of blood, and my heart was showing signs of distress, so they were afraid I might have a heart attack.
By some miracle, I survived. My MC started relatively slowly, with occasional reactions, somewhere in 1998. In early 2000, the severe watery diarrhea started, and wouldn't stop, so I eventually caved in and went to my doctor. To cut to the chase, I can tell you based on personal experience that a colectomy does not resolve MC symptoms. I still have to meticulously avoid all the same foods, in order to keep MC in remission. I've been accidentally exposed to cross-contamination a few times when I attempted to eat at parties held at restaurants, where I was assured that the food was gluten, casein, and soy-free. I reacted, and got sick, anyway. I think the main problem is, unless you have this disease, you can't appreciate how meticulous our diet must be, in order to prevent any reactions. So now I never eat away from home. And my life is much more enjoyable. If I go to any social event, I don't eat anything there, ever.
I hope this helps. Again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.