The pain I have suffered has not been for naught; it has been a road to self-discovery.
It has been a long and rough road, but I may be able to help you take a path less painful then the one many of us with Crohn's disease endure. On this page I plan to tell you about my Crohn's history in hopes that I may be able to help you or others with the disease, especially those recently diagnosed. I am going to list the discoveries I have made that have helped me over the years. At the bottom of the page I have placed links to some pages I found to be helpful and interesting. I have also placed my E-mail link so I can exchange stories and discoveries with you.
I was diagnosed with Crohn's disease during my last week of high school in '79. Since that time, I have had four bowel resections and no longer have a colon, (Large Intestine.) I have also needed surgery on my back as a result of using bone-leaching Prednisone for years. I did what the doctors told me and ate whatever I pleased while avoiding "roughage."
In 1982, after not being able to get off of Prednisone for any length of time, I decided to quit my job, move out west, and attend college part-time studying musical theater and dance.
My joints became inflamed and fluid-filled. The doctor called these, "arthralgias" or "Crohn's Arthritis," an inflammatory process related to the disease. My knees would swell to the size of cantaloupes and my elbows would swell to the size of grapefruits and became stiff and impossible to straighten. My jaw became inflamed and chewing was painful. My rib-cage became inflamed and would cause me so much pain that it literally hurt to inhale.
The inflammation would travel randomly from joint to joint, from week to week. Just when I got used to dealing with one inflamed joint, the "arthralgia" would move to another part of my body.
Not long after this period, my eyes became inflamed and would not seem to heal. I was diagnosed with episceleritis, uveitis, and non-contagious conjunctivitis: three different inflammatory diseases of the eye, my vision was threatened!
Prednisone had washed away cartilage and bone in my joints, as well as my dream of musical theater and dance: I had herniated a disk in my back and had terrible sciatic pain on top of everything else. I was now determined to stay off of Prednisone; there had to be something else that would help.
Food Sensitivities and "Leaky Gut Syndrome"
After becoming so ill that I could no longer attend college, I found my way back to Philadelphia and saw a nutritionist who had some strange ideas about food "allergies." He took blood and put me on a diet that limited certain foods. After about a month...my arthralgias and joint pains disappeared, as did the three different inflammatory diseases of my eyes! What was going on here?
This was my turning point and spurned me on to take charge of my health and to research Crohn's and food sensitivities. I discovered that the bowel wall in a patient with Crohn's disease is stripped of the mucosal lining. This lining normally inhibits undigested food proteins from penetrating into the gut wall or reaching the bloodstream. When a person has a chronic problem of this sort it is called "Leaky Gut Syndrome." Therefore, a person with Crohn's can have the body reacting to food molecules as if they were allergens. I believe the disease perpetuates itself because the resultant inflammation strips away more mucosa and leaves a greater area for an autoimmune/inflammatory reaction. The resulting sensitivities can manifest as "extra-intestinal" symptoms such as arthritis, eye inflammation and skin lesions.
Food Rotation
When my disease was at it's worst, I found great relief by rotating the foods that I ate. I would eat a food, or foods, at one sitting and then abstain from them for 4 days; this worked wonders to quell my sensitivities to these foods and I was eventually able to eat the foods I was most sensitive to on a more regular basis. One exception is dairy products. They were, and still are, intolerable for me, as they are for many folks that I have met and talked with who have Crohn's Disease or Ulcerative Colitis. (Using 100% lactose reduced dairy products did not help me; all dairy still wreaks havoc on my bowels.)
It has been a long and rough road, but I may be able to help you take a path less painful then the one many of us with Crohn's disease endure. On this page I plan to tell you about my Crohn's history in hopes that I may be able to help you or others with the disease, especially those recently diagnosed. I am going to list the discoveries I have made that have helped me over the years. At the bottom of the page I have placed links to some pages I found to be helpful and interesting. I have also placed my E-mail link so I can exchange stories and discoveries with you.
I was diagnosed with Crohn's disease during my last week of high school in '79. Since that time, I have had four bowel resections and no longer have a colon, (Large Intestine.) I have also needed surgery on my back as a result of using bone-leaching Prednisone for years. I did what the doctors told me and ate whatever I pleased while avoiding "roughage."
In 1982, after not being able to get off of Prednisone for any length of time, I decided to quit my job, move out west, and attend college part-time studying musical theater and dance.
My joints became inflamed and fluid-filled. The doctor called these, "arthralgias" or "Crohn's Arthritis," an inflammatory process related to the disease. My knees would swell to the size of cantaloupes and my elbows would swell to the size of grapefruits and became stiff and impossible to straighten. My jaw became inflamed and chewing was painful. My rib-cage became inflamed and would cause me so much pain that it literally hurt to inhale.
The inflammation would travel randomly from joint to joint, from week to week. Just when I got used to dealing with one inflamed joint, the "arthralgia" would move to another part of my body.
Not long after this period, my eyes became inflamed and would not seem to heal. I was diagnosed with episceleritis, uveitis, and non-contagious conjunctivitis: three different inflammatory diseases of the eye, my vision was threatened!
Prednisone had washed away cartilage and bone in my joints, as well as my dream of musical theater and dance: I had herniated a disk in my back and had terrible sciatic pain on top of everything else. I was now determined to stay off of Prednisone; there had to be something else that would help.
Food Sensitivities and "Leaky Gut Syndrome"
After becoming so ill that I could no longer attend college, I found my way back to Philadelphia and saw a nutritionist who had some strange ideas about food "allergies." He took blood and put me on a diet that limited certain foods. After about a month...my arthralgias and joint pains disappeared, as did the three different inflammatory diseases of my eyes! What was going on here?
This was my turning point and spurned me on to take charge of my health and to research Crohn's and food sensitivities. I discovered that the bowel wall in a patient with Crohn's disease is stripped of the mucosal lining. This lining normally inhibits undigested food proteins from penetrating into the gut wall or reaching the bloodstream. When a person has a chronic problem of this sort it is called "Leaky Gut Syndrome." Therefore, a person with Crohn's can have the body reacting to food molecules as if they were allergens. I believe the disease perpetuates itself because the resultant inflammation strips away more mucosa and leaves a greater area for an autoimmune/inflammatory reaction. The resulting sensitivities can manifest as "extra-intestinal" symptoms such as arthritis, eye inflammation and skin lesions.
Food Rotation
When my disease was at it's worst, I found great relief by rotating the foods that I ate. I would eat a food, or foods, at one sitting and then abstain from them for 4 days; this worked wonders to quell my sensitivities to these foods and I was eventually able to eat the foods I was most sensitive to on a more regular basis. One exception is dairy products. They were, and still are, intolerable for me, as they are for many folks that I have met and talked with who have Crohn's Disease or Ulcerative Colitis. (Using 100% lactose reduced dairy products did not help me; all dairy still wreaks havoc on my bowels.)
A drug called "GastroCrom" (cromolyn sodium) taken 30 minutes before a meal may help quell sensitivities as well. It worked WONDERS for me (I no longer need to take it) and the side effects are far less destructive then those of Prednisone. (NasalCrom has since hit the market and is getting much acclaim for nasal allergies.) A nutritionist/allergist first prescribed GastroCrom for me, and after my testimony to my GI doctor, she started prescribing it as well. The "extra-intestinal" symptoms I was experiencing, mainly arthralgias, were helped tremendously with the aid of this drug; it's unfortunate that a study done in relationship to Crohn's was inconclusive, so the drug is not generally prescribed for it. Sugar For years I had horrible gas, bloating, and cramps that I just assumed was part of this disease. I rationalized that sugar could not be much of a factor in my disease, and the doctors reassured me it wasn't; now I know otherwise. I have read that people who have Crohn's Disease and Ulcerative Colitis have a higher then average propensity for sweets! (Breaking the Vicious Cycle - Elaine Gottschall) (I know it is true for me)! After abstaining from simple sugars for a few weeks, (and cleansing the bowel with Psycillium as stated below), I noticed that the horrid gas, bloating, and pain subsided tremendously. There is a great connection between sugars and the amount and type of flora that live in a Crohn's patient's gut. (I don't agree with everything in Elane's book, The Specific Carbohdrate Diet. I feel there is no cure-all. I can state that in over three decades of dealing with this disease, it has morphed considerably and what has helped changes and morph's as well! (I was sickened more with yogurt and acidophilus). I have never been able to tolerate acidophilus or dairy, but there is another measure I take...)
*PSYCILLIUM HUSK POWDER
(or a brand called "Colon Cleanse." Trader Joe's has there own brand as well). Same basic ingredient as "Metamucil," but not as highly refined and is pure -- no sugar or additives. It's not the easiest stuff to get down, but it helps keep the overgrowth of microbes down by maintaining motility (movement) and scrubbing the bowels. It also shortens the time that the body, and those pesky microbes, have to react to foods. Incorporating psycillium into my daily regime is one of the single most important factors in my "recovery regime." I take 3-5 heaping teaspoons twice a day with plenty of water. (And when I don't I really feel it).
*If one's bowels are severely inflamed and/or strictured, one must be careful with Psycillium. Consult your doctor!
Glucosamine and Vitamin "D"
Vitamin "D"...An ABSOLUTE MUST when on Prednisone and should me taken by everyone! Vitamin "D" has been getting a lot of press lately. I started taking it with my calcium citrate as I had read that it was usless to take a calcium supplement without it, as a matter of fact, without "vitamin D" you cannot process calcium properly and if you were to supplement with just calcium, it would benefit you more to just take the vitamin D. this would enable you to process the calcium through you diet. Vitamine "D" is not really a vitamin at all, it is more like a horome with mutitudes of benifits: Cancer prevention is one of the latest discoveries. After years of suffering from bone loss with the use of Prednisone, I have learned I could have prevented most or all of it with supplementation; One study has confirmed this. (I will try to post it.)
Glucosamine has been miraculous for me as well.
Veterinarians started using this stuff on dogs with hip dysplasia, a disease where the hip joint wears to the point that the dog can no longer walk. (And the animals would often be put to sleep from what I understand.)...well it was curing them! Glucosamine is naturally found in and on the ends of bones. I started taking it years ago and I can't believe the difference. Taking it has cured the long-time arthritis in my knees and greatly alleviated the arthritic pain from my hip, (which is bone against bone from years of Prednisone use.) Scientists believed that cartilage, once worn, could not grow back...but no more. Studies and testimony have proven that Glucosamine supplementation can be miraculous!
So can diet really can make that much of a difference? It has worked miracles for me and many others. In fact, it seems many auto-immune diseases are affected by what we put into our bodies. I just watched a TV program about a woman who followed a food sesnsitivity diet and claims to have cured herself of MS!
· Avoid acid producing foods. (I no-longer have chronic canker-sores in my mouth. I've cut out oranges and orange juice, grapefruits as well as other acidy foods like vinegar and a real baddie...tomato sauce). · Avoid Sugar, chocolate and condiments such as mustard and ketchup as well.
· Take Psycillium Husk Powder to keep the bowels clean and keep down the microbes that wreak havoc on the Crohn's patient's bowels. (Definitly consult your doctor before starting a Psycillium regeme.)
Glucosamine has been miraculous for me as well.
Veterinarians started using this stuff on dogs with hip dysplasia, a disease where the hip joint wears to the point that the dog can no longer walk. (And the animals would often be put to sleep from what I understand.)...well it was curing them! Glucosamine is naturally found in and on the ends of bones. I started taking it years ago and I can't believe the difference. Taking it has cured the long-time arthritis in my knees and greatly alleviated the arthritic pain from my hip, (which is bone against bone from years of Prednisone use.) Scientists believed that cartilage, once worn, could not grow back...but no more. Studies and testimony have proven that Glucosamine supplementation can be miraculous!
So can diet really can make that much of a difference? It has worked miracles for me and many others. In fact, it seems many auto-immune diseases are affected by what we put into our bodies. I just watched a TV program about a woman who followed a food sesnsitivity diet and claims to have cured herself of MS!
· Avoid acid producing foods. (I no-longer have chronic canker-sores in my mouth. I've cut out oranges and orange juice, grapefruits as well as other acidy foods like vinegar and a real baddie...tomato sauce). · Avoid Sugar, chocolate and condiments such as mustard and ketchup as well.
· Take Psycillium Husk Powder to keep the bowels clean and keep down the microbes that wreak havoc on the Crohn's patient's bowels. (Definitly consult your doctor before starting a Psycillium regeme.)
·Abstain from Dairy Products...seems to be a pretty universal and insidious problem with Crohn's disease.
·Try an elimination and/or food rotation diet.
Don't just take MY word for it! Check out these incredible links and ... Take charge of your health!
Inflammatory Bowel Disease Update Many new Theories -- Very interesting!
An Alternative View of Crohn's Disease and IBD Food Allergy info: Written by a nutritionist with Crohn's!
What is Leaky Gut Syndrome
Toilet tissue with Aloe and lotion... All people with bowel problems NEED this stuff!
E-mail dadachip@aol.com
E-mail dadachip@aol.com
