When you've got Crohn's disease, any meal has the potential for painful consequences.
Comment: Ask your doctor about probiotics. Probiotics are known to benefit digestive tract problems, including Crohn's.
Unfortunately the medical industry did not pay much attention to it.
You will find lots info on line such as this one: http://www.crohns-disease-probiotics.com/
Comment: I have a very different chronic disease from Crohn's but the darnedest thing about having a crhronic disease is the acceptance of it. I have been dealing with mine for almost twenty years and sometimes I am still surpirised that it is stll here, especially when I first get out of bed in the morning and start the difficult process of living each day. I think I was probably twelve or fifteen years into my illness before it finally dawned on me that it wasn't going to go away, not now, not ever. A friend was recently diagnosed with Crohn's and I've been reading the incredible news about it. I know he does not yet have any idea yet the scope of living with a chronic illness. And while I'll never have the damage from Crohn's myself, I do have an extremely irritable bowel, and I know what you mean about locating each and every restroom, especially the clean and nice ones, in the two counties where I work and live. I'm doing better now that my doctor has convinced me what I can and cannot eat, but it's a really weird way to have to live life, scoping out the restroom the moment I go into a new place, hoping I will not mortally embarass myself with a dietary indisgression. A chronic disease can and will change a person's whole life, even while thinking you will not let it change you. Mine has robbed me of big chunks of my health, my personality and my life. I was not able to finish college in a timely manner, and now it will never happen due to other complications. My income is much lower than it might have been, and I have to go to work every day in pain to earn and pay for the insurance I need in order to support the illness that I would rather throw out the window and be done with. I feel like I now live on the fringes of what once was once my life and the life that other people have. I would cry and rage about it, but that does no one any good, All any of us can do is live the life that God gave us to live as best we can and be happy with the good things that we do have.
Comment: My Mother was diagnosed with Crohns in 1968. She had many surgeries and passed away in 1994 due to having a blood transfusion that was tainted with Hep.C. My younger brother (55 years old) was diagnosed in 1970 and has had multiple surgeries. I was diagnosed in 1982 and have had two resections. I am now on Remicade and doing very well. I was to the point that I felt food was my worst enemy.
Comment: I come from a long line of Crohn's patients. Even though doctors are still reluctant to identify it as a genetic disease, my mother, her father and both of her brothers have been diagnosed. I, along with at least 3 of my cousins have IBS or IBD, though none of us has been diagnosed with actual Crohn's yet. My childhood was marked by my mother's long periods of hospitalization, and never understanding why she was so sick. She was the first to be diagnosed in our family (1977), and the one who has been dealt the brunt of this disease's wrath. I grew up in the shadow of a disease no one had heard of, and that was, quite frankly, embarassing to talk about.
Thankfully, more and more people have come out of the Crohn's closet in the past 30 years. Our bathroom practices are no longer a taboo conversation topic, and the general public has a better understanding of basic medical terms. My mom carries a bathroom card in her wallet, as do several of my relatives, and I think they requested them from CCF. It essentially states "I have an urgent medical condition and I need to use the restroom immediately. May I go before you in line?" I don't think she has ever pulled it out in a public situation, but just having it there really eases her mind.
Comment: John, thanks so much for writing about Crohn's. We need more people to be aware of this condition. I too have Crohn's, and have had it since a young kid (I am fairly sure I had it since about 3 years old but wasn't diagnosed till age 11). I think it robbed me of my childhood as I couldn't lead a "carefree" existence, although don't get me wrong most of the time I remained positive and hopeful that one day I would be free of the disease. I was fed by ng tube (with elemental diet) for a whole 8 years, and am still having elemental now as a supplement to normal food (the food I eat is pretty bland and as I also have severe food allergies I am even more limited). I've also had 6 major operations, including an ileostomy (which has thankfully been reversed, but I have been told there is a good chance I might need another one in the future). I've been in the high dependency unit and nearly lost my life several times. I have been left with osteoporosis due to the high doses of steroids I was given as a child (no one told us about the potential long-term problems back then). However I know just how lucky I am to still be here and I am thankful every day to have another chance to live. My heart goes out to anybody else, young or old who has this illness and I pray that you get some relief soon. All the best.
Comment: I also travel to Jersey often I have family that lives in East Brunswick in Jersey!! :-) I will have to map out the trail of clean bathrooms thats one of my issues I hate using public bathrooms because of the filth.
Amanda-from PA
Comment: macdonalds is usually a safe bet where ever you go. they always have cleaner public restrooms, if you can hold out long enough to get to their exit. lol.
Comment: I'm so happy to hear you are doing better. I believe that I have had crohns since I was a young child since I had the symptoms since then. I would go from doctor to doctor for them to tell me I had nothing wrong..maybe the stomach flu, bad gas?, high fevers but oh we don't see anything wrong, well finally on 1/14 of this year I was diagnosed. Keep in mind every doctor I went to I told them crohns was in my family but still no tests were being done even though I would cry and complain! My husband loves to travel and I myself...I am looking for the restrooms and avoiding eatting when on the road if possible. It so hard going out to eat when you have small children that just want to go to McDonalds or some place they can get a toy with their meal. I sit there and try to find something I can eat usually just sitting and watching others eat while I drink my water. Its hard but I am hoping my new diagnosis which was severe crohns and the new meds will help me someday to find a happy spot in my life without all of the vomitting, diahrea and pain. I just want to be a happy healthy mom and not want my children to remember mommy being sick all of the time.
This really made me feel like someday I too can lead a some what normal life.
Amanda- from PA
Comment: Enter Your Comment i don't think you'll get much normalcy with this condition; but hold on to your faith to get you through those bad times. i too have a son and i feel guilty that i can't always spend the quality time doing things we did before my condition worsened. but he is 14 and i think he understands what i'm dealing with. hopefully your meds can help you hold your food better. thankfully, i don't have the nasueated problems anymore. i can eat anything, eventhough i usually eat bland foods (baked or broiled; no sauces or dressings, condiments). everything plain. but i'm used to it now. my meds are plentiful. asacol, 6mp; imuran; folic acid; lomotil; vicodin (for pain but i try to limit taking these only if i'm away from home for the day and don't have access to a hot bath--which hardly ever occurs). i was on remicade treatments but had a horrific side effect after taking for over a year. the treatments were helping anyways. i suffer from uncontrollable diahrrea. i can feel great, look great but never know when i will have to go. i can be driving in the car and all of a sudden i'll have an accident in my pants; sleeping is a nightmare when i awake in a pool of stool; and i wipe myself so much during the day from going to the bathroom that my rectal area feels raw. that's why i soak in the hot tub so much. doesn't happen every single day but enough to keep me from being able to hold a job. so i spend a lot of time at home in isolation. gets depressing. seeing a therapist for depression to. i guess you can say i'm a real mess. lol. but i'm trying to deal with the drastic change in my quality of life, or lack thereof and keeping my sanity. i'm meeting with a state representative next week to see if i can join his 'quality of life committee'. maybe we can get some changes made. we were able to get enough signatures to enact a law in michigan to allow people like us to use nonpublic restrooms when out in public shopping, etc.
Comment: You sound so much like me before I started Remicade treatments. I have my life back and work from 8-15 hours a day. It has made the difference in just existing and actually living again. It is worth checking in to.
Comment: Glad you're doing better. I know too well what you've been going through. I live in Michigan now but I had to smile to myself when you spoke of the public restrooms on Route 1 in NJ. You see I know them very well myself since while living in Newark during the 70s and 80s; I traveled that road many days and because I worked in Central NJ and in Manhattan, I liked to think I knew where every public restroom was from Newark to NY. After 30 years of dealing with the disease, I am no longer working which makes it much easier for me. However, I do feel isolated since I spend most of my time at home. If you get a chance, check out my book "If You Knew How Regular I Am; You Wouldn't Be So Full Of It".
Not only do I address the pitfalls of living with the disease but also the financial burden when you can no longer work with the disease. Please take heed and if you are not now, start getting your finances in order (such as disability insurance and an emergency fund). Once I began suffering from uncontrollable diahrrea and could no longer hold my job; it took 2 appeals (almost 1 -1/2 years) with the insurance carrier before they would approve me for long term disability. To date, I am still awaiting a hearing for Social Security Disability (2 to 3 year wait in Michigan). So, with this disease you must be prepared financially in the event it deteriorates t the level where you must stop working. Wish you well.
Comment: As a sufferer of crohns, i can identify with these things. Although I suffer from horrible mouth and esphagus ulcers that will lock my jaws for a week at a time about 2 times a year and also the skin ailment of pyoderma gangrosum.
On Remicade.....its expensive and my body built up the antibody to it within 2 doses. At this point my gastro is at a loss on what to do. Done a lot of meds and have to avoid some due to liver issues.
Glad to see it is at least being addressed! Gl to all those that are dealing with this dreaded disease and those that love them
Comment: As a sufferer of crohns, i can identify with these things. Although I suffer from horrible mouth and esphagus ulcers that will lock my jaws for a week at a time about 2 times a year and also the skin ailment of pyoderma gangrosum.
On Remicade.....its expensive and my body built up the antibody to it within 2 doses. At this point my gastro is at a loss on what to do. Done a lot of meds and have to avoid some due to liver issues.
Glad to see it is at least being addressed! Gl to all those that are dealing with this dreaded disease and those that love them
Comment: Hello everybody, thanks for all the great feedback.
Just to address a few questions, I've had three doses of Remicade and it seems to be working, but its no miracle drug. I think that a good place to start when looking for info is the Crohns Colitis Foundation of America, www.ccfa.org. They have medical research as well as a list of physicians there. There also are a lot of support Web sites that can be found very easily. If that doesn't work, ask your regular doctor for a recommendation on a GI and go from there. And by the way, I do find the time to cheat on the my diet, especially around the holidays, although there are some foods that I absolutely am afraid to touch.
Comment: Hi, I have gluten sensitivity and I have been reading lots lately about gluten sensitivity and celiac disease. In the books, there is also stuff included about Crohn's disease. Some authors suggest that it can only do good for a Crohn's patient to completely avoid gluten as well as cow's milk products. Anyone have some thoughts about these ideas?
Comment: Just a thought. I myself have gluten sensivity and I am trying for the year 2008, to avoid as much gluten as I physically and emotionally can handle. In reading about gluten sensitivity and celiac disease there is also much written in the same books about Crohn's disease. Some authors suggest that avoiding gluten and cow's milk products can also do wonders for Crohn's patients. Anyone have any thoughts on that?
Comment: where do you find the right doctor for these issues much less the medication?
I'm not sure if i have crohn's disease but have been diagnosed with iIBS and microscoptic colitis and the medication i'm on is mesamaline? is it simiiar and who do I ask? mcevers@hotmail.com someone out there please kindly advise.
Comment: i was diagnosed with Chrons in 1984 at age 14 and was treated with prednisone for a couple years. I hated the medication and wanted to stop taking it (made my face puffy and created acne) so I exaggerated my symptom reporting to the point where at age 16 I went to John Hopkins to have the offending section of my intestine (ileum) removed. Since then I've been symptom free and medication free.
I well recall eating fiber rich foods and being in the fetal position waiting for the pain to end, the cramps, the nausea, etc. Now, my main issue is the speed at which certain foods flows through me (I believe the ileum regulated the flow), which can be fast, but frankly, it's not that big a deal. I can eat, and do regularly eat, fiber rich foods without any issues.
I'm just happy the Chrons symptoms are gone and I don't take any medication. If anyone is on the fence about surgery, I'd say do it, and sooner rather than later.
Comment: I don't see any mention here of Remicade. A relative of mine takes it by IV and it helps tremendously. I don't think he has ever had surgery and is in his late thirties. Initially it was given through a drug study but I believe it has been approved now.
Comment: I empathize with John. Iwas diagnosed with Crohn's in 1972 at age 13. It caused very painful rheumatoid arthritis and supposedly stunted my growth. Like John, I knew every clean bathroom, took massive doses of prednisone and followed a strict diet. I had 9 major surgeries including a colostomy and ileostomy. Unrelated to Crohn's I also had a kidney transplant.
The longer you have Crohn's the more you know how little is known about the disease. Prednisone is still the most effective "treatment" and most doctors use a trial and error approach. I have been asymptomatic for the last few years and my advice to John and other patients is to complement their medical treatment by taking control. I am very health and fitness oriented and believe that Crohn's patient must force themselves to exercise vigorously (cardio + weight lifting) 30-45 minutes per day 3-4 X per week.. I also think it is a mistake to avoid fruits and vegetables. Bananas, cooked peas, and yogurt are easy to digest.
Comment: Thanks for writing this article. I've had Crohn's for 10 years. I was in remission for seven years thanks to Purinethol (6MP). After going into a stubborn flare a couple of years ago, I finally tried the Specific Carbohydrate Diet, created by Elaine Gottschall. It's helped me make a HUGE turnaround. I know lots of people who have also been helped by this diet. I feel compelled to share this info, in case it helps another person get healthier. I know Crohn's is very individualized, and I wish everyone the best health.
Comment: Thanks for posting.I am a teen who was diagnosed with Crohn's just three months ago.My pain is terrible sometimes and I can't eat any of my favorite foods,but atleast I can eat-many kids can't.I was taking 18 pills a day but now only 12!! I had never swallowed a pill before and it is no fun.I just started taking 6-MP and I am nervous about it cause I don't make enough of the liver enzyme to makes it really safe-but there aren't many options right now for me.Most people don't seem to know much about this disease and think I just have an upset stomach once in awhile.I lost 10lbs bu7t have gained back some of it.I am shaky from all the medicine and some days I hurt all over-even in my legs and arms.I hate my moon face but I know it will go away when I stop the steroids. I feel blessed though because many kids have had many surgeries . I hope that more and more people will speak out about this disease so that others like us can feel more comfortable talking about our disease and more money will be raised for a cure!
Comment: Thank you for the post. It definitely helps raise awareness of the disease. You may want to consider dietary alternatives. The last two years of medical research have shown that crohn's is definitely connected to gut flora. This link has a story of a New Jersey woman who was able to use diet to improve her daily life with Crohn's:
http://www.scdrecipe.com/journal-entry/specific-carbohydrate-diet-interview-rochel-weiss/
Comment: John, I know what you're talking about. I had severe Crohn's colitis for two years, which resulted in the removal of my colon and an illeostomy. I've lost track of how many obstructions I've had since, and, for the past few years, I've had a recurrence of Crohn's in my small bowel, which has been resected once already. The 6-MP I was taking for it put me in the hospital for over a week. I've got a list of foods I won't go near for anything.
Still, like you, I keep in mind that others have it worse than me. I especially feel for the children, who seem to have so much more severe disease, and those who have complications that can lead to eye and spine damage. I've also had an incredible support system of family, friends, and medical professionals, for which I'm very grateful. And, even with the challenges of Crohn's disease, I have a very good life (I'm getting married next year!), and I'm very grateful that I am able to appreciate the good days, using that to get through the bad.
Kerry
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