Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
3. Diet - I eat a VERY strict diet. It is mostly salad and fish . I have begun adding in some breads and turkey now that I'm feeling better.
I suppose the lack of gluten helps when you are limited to salad and fish, but adding breads back in...really?
This administrator eventually tried a vegan diet with limited results, and had plans to start a pepto regimen.
What shocked me was seeing dozens of posts with NO MENTION of gluten, dairy intolerance, food intolerance testing, nothing. But they did understand the NSAID connection, the related autoimmune conditions, and they even knew about mast cells.
I know the internet is a wonderful thing for patients with "rare" diseases that their doctors don't fully understand, but I worry for all the people who spend a lot of time following totally uninformed recommendations.
I suppose some could accuse us of the same things here, but we have hundreds of patients with lasting results as a testament to the advice given on this forum.
Boy, I looked through there and they really don't have a clue do they. Really made me want to post our link but I know I can't do that. HaHa Besides, if they are on the net and looking up the condition, they have certainly had the chance to come here.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
Compared with the internet in general, and other MC boards in particular, we are an extremely radical group, here. LOL. The thing is, people believe what they want to believe, and most of them logically, (though mistakenly), assume that prestigious sites, such as the CCFA, and the major hospitals, offer the most reliable information on IBDs. It's a sad situation, but that's just the way that things go.
We've had a few really sad cases in the past, where mothers with newly-diagnosed kids joined to get advice, but when our advice didn't match what their doctors said, (and especially when their doctors advised them not to listen to advice offered on the internet), they stopped posting, and fell into the clutches of their doctors, who were recommending drugs, of course. It's a cruel world, sometimes.
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.
Hi Zizzle:
I have on occasion looked at that Lymphocytic Colitis and Microscopic Colitis site on the Crohn's Forum and I agree with you they seem so clueless and misinformed. I was like ouch! ouch! reading some of the things they said they eat or do. The thing that struck me most was the way the site seems to push medications and swapping prescription ideas. I'm so happy to be off my Entocorte for almost a year now. My good days are directly timed to finding you kind "radical" thinkers who have helped me with my diet.
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
I totally agree. Throughout all of what I had been going through for over 2 years (before finding this site), something inside told me that the doctors were wrong. In addition, MH kept telling me just to follow their orders. So... I blocked out what they were all saying and kept looking until I FINALLY came here. I am so thankful I didn't stop looking for the "right" answers. There were too many "dots" not connecting in the medical field and with my naturopathic doctor.
Zizzle, thanks for posting this.
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."
I don't know what I did for years looking for information but it took almost five to find this one and it was because of a post I made on the Mayo clinic site. I was directed to check this one out and I am so thankful. A big part of what goes on here is not appealing to many simple because it is hard and takes time. It's easier to roll one's eyes and dismiss this as extreme. I remember visiting my chiropractor who also uses functional medicine and a colleague suggested changing my diet to just eating whole foods. I clearly remember thinking she was nuts and it was NOT for me no matter my issues with D- it was too hard and I loved my sweets and junk foods. If I had started along that line earlier I wouldn't be approaching five years of disabiling CC. It has taken a toll on my family, my recreational enjoyments, and my health. A year into CC there was always something inside me that said the drug route was not right for me and there was something causing the problem even though all the doctors and literature simply says "cause unknown, no cure." The past few years I clearly knew it was food related since everytime I ate, I felt sick. It seemed so simple to me but I had no way of figuring it out and the doctors were no help. The closest I came was my chiropractor/nutritionist who has the general idea that is expressed here but lacks the knowledge related to MC, so I spent thousands of dollars and still had no relief.
Some doctors are getting there and others simply have no clue. It's a shame the years of quality life that have been lost and money that has been wasted due to the lack of an open mind to learn from those that live it everyday.
I understand, Deb. I was lucky.. At the time of my colonoscopy I asked the nurse what the doctor was looking for with the biopsy and she told me MC. I immediately went home and looked it up and found Sally's original board. Been there or here ever since. I was so relieved to hear that I wasn't alone with "my problem" and it had only been a few months for me. I can't imagine 5 years. I was diagnosed in 2004 so there really wasn't very much info out there at that time. Like I said, I got lucky.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
I also found this board son after my dx, and relatively early in the process. I had only been sick for about 9 months. I am so grateful for finding it.
I also found this site shortly after I was diagnosed. I got my diagnosis from Mayo and then read that it, LC, was "chronic" and could last several years, if you were lucky, and then may go into remission. I remember thinking (okay it was WTF) that is not acceptable after my doctor(substitute, mine was on vacation) told me to take immodium and return if I still was having issues. I changed my diet, ordered Enterolab and went into remission within a month. I still amazes me how someone can believe that what they eat does not affect this condition!
Visit the Microscopic Colitis Foundation Website
It's a cruel world, sometimes.
