Hi all,
My name is Deanna, I'm 37 and was diagnosed with Crohn's in 2004.
After first being diagnosed I was intolerant of many of the drugs. I can't take anything like asacol, most 6mp's and I'm non responsive to steroids. Rimicade on double the dose and methotrexate worked for about two years, nothing has worked since.
I was tested for celiac twice and both times it was negative. I was also fasting for scopes and not able to hold most food down for a week before they did either test as a last ditch test for "why are you still sick".
I'm on cimzia now, will have my week 4 shot from the start up does Thursday of this week and so far it's not doing much. Pain is better, vomiting has stopped, mouth sores are gone, diarrhea is WORSE so I'm still pretty much confined to my home if I want to eat anything that day.
Beings nothing else has really worked I decided to try a major diet overhaul and someone recommended this place, so here I am. :)
Newbie intro
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Deanna,
Welcome to our internet family. I love the subtle humor in your username. With an IBD, sometimes you have to laugh, to keep from crying. I'm sorry to hear that even the anti-TNF meds don't seem to work for you. That really sucks.
We are honored that you have chosen to spend some time here, and I truly hope that you can find a solution here. While we certainly can't claim 100% success with the diet, we have for the most part, had very good success in the use of diet control for treating the symptoms of MC, and I have always thought that it should be beneficial for the other IBDs, also. While there are a lot of differences between MC and Crohn's, there are some interesting similarities, such as the fact that both can affect any part of the GI tract, from mouth to anus, (most GI docs don't even realize that's true for MC). For example, we also get those mouth sores, and many of us also have problems with nausea, even though the GI docs insist that nausea is not a symptom of MC, and they say that the mouth sores are unrelated, etc. The symptoms of MC are not as severe as the symptoms of Crohn's, but the "accidents" make it a very humbling, (and debilitating), disease. Like you, we can't stray very far from the bathroom, when we're in a flare. And even if we stay close, sometimes we don't make it in time.
Many here are able to completely control their symptoms, (attain remission, and maintain it), by diet alone, and others find that a combination of diet and meds works better for them. One of the hangups with MC is that it isn't always easy to track down all our food intolerances, and unless we discover all of them, and cut them out of our diet, we will still continue to react. Some can resolve their symptoms by eliminating all traces of gluten alone, from their diet, most of us have to also avoid all dairy products, about half of us have to also avoid soy, and all it's derivatives, and others have to avoid other foods, such as eggs, yeast, etc.
Ordering a stool test from Enterolab, in Dallas Texas, helps to take a lot of the guesswork out of determining food intolerances, but it can also be done by means of an an elimination diet, without spending any money on tests. Enterolab's stool tests are several orders of magnitude more sensitive than the classic celiac blood tests. Those of us who are sensitive to gluten, are typically just as sensitive to gluten as the average celiac, and yet we invariably receive a negative test result to those blood tests, unless we actually have fully developed celiac disease, in addition to MC. We also tend to have negative small intestinal biopsy results, from an upper endoscopy, as far as villus damage, is concerned. Even so, many of us have sufficient small intestinal damage, that we have a severe nutrient and fat malabsorption problem. Once the offending foods are eliminated from the diet, and the gut has sufficient time to heal, the malabsorption problem will go away.
I'm not a doctor, but I sincerely believe that there is a good chance that at the very least, you will be able to derive significant benefits from a modified diet, especially concerning mobility. One thing about the diet - it has no Draconian side effects to be concerned about, so it can't hurt.
We will try to help in any way we can, so please feel free to ask anything that comes to mind, and again, welcome aboard.
Tex (Wayne)
Welcome to our internet family. I love the subtle humor in your username. With an IBD, sometimes you have to laugh, to keep from crying. I'm sorry to hear that even the anti-TNF meds don't seem to work for you. That really sucks.
We are honored that you have chosen to spend some time here, and I truly hope that you can find a solution here. While we certainly can't claim 100% success with the diet, we have for the most part, had very good success in the use of diet control for treating the symptoms of MC, and I have always thought that it should be beneficial for the other IBDs, also. While there are a lot of differences between MC and Crohn's, there are some interesting similarities, such as the fact that both can affect any part of the GI tract, from mouth to anus, (most GI docs don't even realize that's true for MC). For example, we also get those mouth sores, and many of us also have problems with nausea, even though the GI docs insist that nausea is not a symptom of MC, and they say that the mouth sores are unrelated, etc. The symptoms of MC are not as severe as the symptoms of Crohn's, but the "accidents" make it a very humbling, (and debilitating), disease. Like you, we can't stray very far from the bathroom, when we're in a flare. And even if we stay close, sometimes we don't make it in time.
Many here are able to completely control their symptoms, (attain remission, and maintain it), by diet alone, and others find that a combination of diet and meds works better for them. One of the hangups with MC is that it isn't always easy to track down all our food intolerances, and unless we discover all of them, and cut them out of our diet, we will still continue to react. Some can resolve their symptoms by eliminating all traces of gluten alone, from their diet, most of us have to also avoid all dairy products, about half of us have to also avoid soy, and all it's derivatives, and others have to avoid other foods, such as eggs, yeast, etc.
Ordering a stool test from Enterolab, in Dallas Texas, helps to take a lot of the guesswork out of determining food intolerances, but it can also be done by means of an an elimination diet, without spending any money on tests. Enterolab's stool tests are several orders of magnitude more sensitive than the classic celiac blood tests. Those of us who are sensitive to gluten, are typically just as sensitive to gluten as the average celiac, and yet we invariably receive a negative test result to those blood tests, unless we actually have fully developed celiac disease, in addition to MC. We also tend to have negative small intestinal biopsy results, from an upper endoscopy, as far as villus damage, is concerned. Even so, many of us have sufficient small intestinal damage, that we have a severe nutrient and fat malabsorption problem. Once the offending foods are eliminated from the diet, and the gut has sufficient time to heal, the malabsorption problem will go away.
I'm not a doctor, but I sincerely believe that there is a good chance that at the very least, you will be able to derive significant benefits from a modified diet, especially concerning mobility. One thing about the diet - it has no Draconian side effects to be concerned about, so it can't hurt.
We will try to help in any way we can, so please feel free to ask anything that comes to mind, and again, welcome aboard.
Tex (Wayne)
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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Hi Deanna
welcome! and greetings from down under (australia) sorry to hear that you are feeling crap (yep the pun is intended!)
if you get the chance (and you have the energy) peruse some of the threads/chats. Majority of the 'family' use diet/ingredients as the main management tool, the sucky part is that it is not an instant quick cure....
depending on age, other health issues, intolerances (both food and meds), work/life demands everyone has a different regime to try and control the Diarrhea (D) demon....
i am pretty sure that 99% of people on here got a good response from removing gluten from their diet (even though we tested negative to celiac)
I am 40 years of age (female) diagnosed late last year, i was very lucky i did not have to endure chronic symptoms for very long before a) i got diganosis and b) i found this great website and these wonderful people....
i am still having minor flares which i am 'jiggling and juggling' the diet to sort out.
the 'elders' of the MC family (not in age but moreso in their experience with managing this demon) will definately write you a note and all will tell you that you can ask 'anything' poo questions, gas question. med questions someone at some time has probably experienced the same!
my theory with this thing is that we all have 'diamond days' and 'stone days' and it is the one place you can share this....
take care, try not to stress too much, you have found the place that can help you.
Gabes
welcome! and greetings from down under (australia) sorry to hear that you are feeling crap (yep the pun is intended!)
if you get the chance (and you have the energy) peruse some of the threads/chats. Majority of the 'family' use diet/ingredients as the main management tool, the sucky part is that it is not an instant quick cure....
depending on age, other health issues, intolerances (both food and meds), work/life demands everyone has a different regime to try and control the Diarrhea (D) demon....
i am pretty sure that 99% of people on here got a good response from removing gluten from their diet (even though we tested negative to celiac)
I am 40 years of age (female) diagnosed late last year, i was very lucky i did not have to endure chronic symptoms for very long before a) i got diganosis and b) i found this great website and these wonderful people....
i am still having minor flares which i am 'jiggling and juggling' the diet to sort out.
the 'elders' of the MC family (not in age but moreso in their experience with managing this demon) will definately write you a note and all will tell you that you can ask 'anything' poo questions, gas question. med questions someone at some time has probably experienced the same!
my theory with this thing is that we all have 'diamond days' and 'stone days' and it is the one place you can share this....
take care, try not to stress too much, you have found the place that can help you.
Gabes
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Dear Deanna
to the family
When you have time and if you feel like a bit of a read, you might like to look at this thread of posts.
http://www.perskyfarms.com/phpBB2/viewt ... 95&start=0
It refers as much to Crohns as MC.
Love, ant
to the familyWhen you have time and if you feel like a bit of a read, you might like to look at this thread of posts.
http://www.perskyfarms.com/phpBB2/viewt ... 95&start=0
It refers as much to Crohns as MC.
Love, ant