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FORUMS > Crohn's Disease / Ulcerative Colitis
Replying to Topic: Crohn's or Ulcerative Colitis
Created On 12/26/04 8:52 PM by BH613


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BH613
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12/26/04 8:52 PM
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Is anyone dealing with a young child (10) who has this disease? What has worked? How do you deal with explaining a nissayon to the young child?


Edited: 2/4/05 at 9:47 AM by FrumSupport Moderator
 
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Certain
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1/3/05 1:42 AM
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I can only say that unfortunately you are not alone.

Diet. Diet, diet, diet, diet, so on so forth. Focus on diet.

I know a New Jersey practitioner with excellent performance records on digestive disorders.

Also, is she already on a diet? She will need a lot of support since such young children do not prepare their own foods and tend to conform. She will need her own snacks/lunches/ between other kids and needs to have teh right attitude towards it.

What I recommend is a highly structured diet to begin with, adding single foods slowly to see what is tolerated adn what not. Its a long process.
 
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BH613
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1/3/05 9:39 AM
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Do you know of other 10 year old or older boys who have this? I am looking for a chavrusah for my son.
 
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Marcus
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1/4/05 12:12 PM
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I am an adult male, who has had Crohn’s for almost ten years. I am not a doctor, but have actively managed, with great success, my own care with doctors during this period. As the writer below stated, a critical component to keeping the disease under control is your diet. You must control and monitor your diet meal by meal. As you are likely Kosher, keeping to a Crohn’s diet is comparable to keeping Kosher. There will be some rules and all you need to do is follow them. Don’t deviate from them and you will be on your way to managing this disease.

As your son is very young, he is at an advantage because the sooner you start the proper eating habits the sooner he will forget that he ever ate differently. They will become routine and he will not feel that he is being deprived or singled out. (I have a son with a peanut allergy and he now rarely feels left out – presentation of the diet to your son will help you manage the diet and his expectations and feelings. In fact, my son sometimes feels special that he has to avoid certain foods). Family and friends will be honored to ensure that your son’s diet is achieved, even when you are not around.

I have been on a strict diet since being diagnosed and attribute my ability to limit flare-ups to my strict diet. If I stray from my diet, my body quickly reminds me of this fact. You should discuss an appropriate diet with a nutritionist and your doctor. Together you can put together a proper diet for your son that is manageable and works for him. Each person is different and his diet needs to be customized for his needs.

There is also a book that is out there called “Breaking the Vicious Cycle” that I picked up when I learned I had the disease. It seemed a bit much at the time to stick to that diet, but I modified the diet provided and said that if I ever got sick, really sick, I would be prepared to institute the diet. I have heard people rave about this book for serious sufferers. You may want to pick it up and keep it as a last resort. Mine is tucked away deep in my closet, but just ask and I can locate the author for you.

That leads me to the second component of the disease that is critical. You need to select a doctor with expertise in this field. It is still relatively a new field, but the medical developments, medication, treatment, and diagnosis is reaching new heights. In your situation, you need a doctor that deals with the disease and treats children as a child’s problems are different from an adult’s. Word of mouth is important. You need to speak to other families with Crohn’s children. How do you find them?

This leads me to the last part of your question – support groups. I am unaware of any frum support groups, other than this great website, but there must be groups out there and I strongly urge you to join or at least investigate the Crohn’s and Colitis Foundation Association (“CCFA”) as it is an incredible source of credible, valuable and current information on this disease. I am a member and I appreciate all that it offers. While it is a secular organization, Crohn’s is a disease that affects a disproportionate amount of Jewish people. There have been studies out that seem to reveal that this is an inherited disease. Many of the leaders of CCFA are Jewish. The website is www.ccfa.org As is Jewish tradition, a great deal of charity pours into this organization, I believe, because of the concept of tzedukah from Jewish people. CCFA has greatly enhanced the research in this area and they are close to finding a cure and are at the cutting edge of supporting research on effective treatments.

CCFA also offer support groups and great information. I have not needed the support groups, but I read the literature on them and it is fascinating. Also, the CCFA will keep you up to date on treatments and medication. In fact, you should call the CCFA and I am certain that they will find a support group for your family and your son. Perhaps, when you feel comfortable, if there is no support group for families in your situation, you may even consider forming one. There are lectures as well and events that are targeted for only children.

I hope this helps.


-------------------------
Marcus
 
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Joel
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1/10/05 1:31 AM
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Since the book "breaking the vicious cycle" is built on a no carb diet, I would want to share with all of you this number of someone in Monsey, Weiss, that sells many items for this diet. My husband is suffering from colitis & I try to prepare meals accordingly. The most important thing that I find, is substituting the bread for something else that would satisfy him. I therefore make muffins out of almond flour (bought by DDI Digestive Diet) which is more easillly digested than wheat flour, & honey which is the only sweetener that this diet allows. This Weiss sells a cookbook with many special recipes & also the book of "breaking the...."
There phone number is: 1845- 356-3504
 
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member
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1/12/05 8:50 PM
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Does anyone know how diet plays a role after resection surgery? I have had no symptoms in the past year after my surgery (B"H) however I would like to keep it that way. I am on medications, but if anyone has any experience with diet as well I'd love to hear... thanks
 
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member
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1/12/05 8:53 PM
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The message above about CCFA is really true. Not only are their magazines very informative, but the organization is very helpful and patient with all my questions...I would strongly recommend you all becoming members...
 
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Ray
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1/28/05 12:32 PM
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Can I ask how long ur on a diet?
I'm finding it extremely difficult. I have a lot of things going on in my life and I'm just getting sicker and I'm on real strong meds.
 
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Marcus
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1/31/05 9:45 AM
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Unfortunately, each case is so fact specific, I do not believe that you will really be able to apply someone else's situation directly to your situation. Regarding diet, you need to tinker with it to see what works in YOUR situation. Like a science project, change your diet by varying one item at a time and see the results. Perhaps you can work with a nutritionists? Proper "dieting" is not just for us suffers. Diet is critical to every aspect of our health. "Garbage in, garbage out."

I have been on my diet since my first attack eight years ago. It is a modified diet because I have been blessed my good health since the attack. Then again, I take my medicine too and have attempted to control my stress. Whenever I deviate too much from my diet I feel the results, which helps to remind me to stay the course of a proper diet. Until there is a cure, I am afraid that this will be a bit of a roller coaster ride for you, but dieting will help make the valleys short and not too low. Remember, when you are feeling good enjoy it, but be cautious!

Lastly, your comment "I have a lot of things going on in my life" leads me to believe that you are very stressed. My readings, as well as my own body, have taught me that stress causes so much trouble for us with Crohns. I got my first attack when I was what I perceived as the most stressful time of my life. Stress is extremely damaging and you must do what you can to control it. If you need help dealing with stress then seek it out now. Do not go through this alone. Perhaps your care giver can make a recommendation or there may be another area of this website that may have helpful suggestions and referrals.

In sum, diet is forever and control your stress. This is true for non-Crohn's suffers as well. Again the CCFA may be able to assist you in both areas. Be well.


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Marcus
 
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Ray
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2/1/05 4:28 PM
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Marcus,

thanks for your reply. I am actually on a new diet now, different from most crohns patients, I will wait and see if it helps.
I have to learn how to deal with stress too which is what I just started.

thanks again.
 
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splenda
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2/3/05 9:54 PM
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what were your symptoms of chron's disease?


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splenda
 
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chip
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2/7/05 10:06 PM
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i have colitis for 5 years. i've tried a few of the popular diets and it hasnt worked for me.
 
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specialmom
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3/1/05 7:56 AM
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My 6 year old has eosinophilic disease and Crohn's. Since he requires exclusively elemental diet (Neocate) for the EG, his Crohn's is in complete remission. Unfortunately most doctors don't use elemental formula as tx for Crohn's since they see it as too restrictive (even though I know there are clinical trials which have shown it is effective in treating Crohn's), but it is common practice in treatment for EG (since for most patients there is no other treatment except a central line instead of any feeding). If other dietary changes are not helping, though, you might discuss the possibility with your GI of using elemental formula. It is not very palatable, though, I'm afraid; most EG patients require gtubes due to the anorexia associated with that disease, so when they can't drink enough Neocate/EleCare the rest can be tube fed. I know that most Crohn's patients don't have gtubes, though, so the palatability is a bigger issue I'm afraid.


-------------------------
mom to 5 bli ayin hara, with issues including eos enteropathy, bipolar, ACC/SID, LD, dev delay, gtube, etc
 
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Eema
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3/8/05 3:37 AM
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My daughter, now a teenager, was diagnosed at age 10, and was critically ill for nearly a year. After a single infusion of remicade, she was stablized on 6MP, & was doing well for many years. Diet was never much of an issue for her, except when she was flaring & hemhorraging. Even with her very narrowed intestine, the only items she has to limit are popcorn, nuts & raw cauliflower & carrots. I know others who are very restricted, & can't have as much as a sesame seed. Everyone is different, & you have to find what is best for the individual.
 
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Oyy
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4/7/05 10:37 PM
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Hi Eama..

Are you saying that this remicade stuff can actually cause bad stuff? I just turned 23 and my dr. recommends now remicade.. for my ulcerative colitis.. im just sick and tired of all these wield meds that do crazy stuff to you.. and these diets that are all bets off.. auhhhh..

g; shabbos everyone.. enjoy the challah!
 
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Ray
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4/8/05 11:14 AM
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HI Oyy,

FEEL GOOD.

Ray


Edited: 1/11/07 at 5:04 PM by Ray
 
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Marcus
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4/19/05 8:53 PM
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Hi Ray,

It has been a few months since you changed your diet and I was curious to see how it was working out. Hopefully, you are doing much better. Remember, diet works in conjuntion with any medicine. Good luck.


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Marcus
 
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Ray
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4/20/05 11:58 AM
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Marcus,

Thanks for asking. I'm not on the diet now, i tried to stay away from onions, cabbage and grapjuice strictly for a few weeks, i don't know if there was a difference. I'm finding it very very VERY difficult to be on the diet. I can't find the right one for me.
now i just eat whatever i want, i also get migraines lately, bad ones so i was told to stay away from certain foods cuz of that, in other words I can't eat anything, so i eat everything, it's terrible i know.
i think maybe after pesach i'm gonna buckle down.


Edited: 4/20/05 at 12:48 PM by Ray
 
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Marcus
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4/20/05 1:33 PM
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Ray,
Glad you are feeling a little better. I guess "diet" is the wrong word, because it does seem like you made some adjustments. Good for you. I think the first step is to eliminate 100% the foods that cause you problems. Eliminate a new problem food each week and soon they will all be gone. Once you get that under control, you can move onto what you should be eating. In the interim, you may want to consider some vitamin supplements because with the elimination of some foods, you lose some important nutrients. For me, I take Calcium supplements because I have eliminated almost all diary products from my diet. Giving up Pizza and ice cream was very difficult for me! I have also eliminated all alcohol. That was a huge difference. It was not easy, but it is done and I feel very good and proud of myself, which helps in other areas of life. I guess Pesach is not the time to make too many adjustments. You should be a little more affirmative on the after Pesach goal. "I think maybe" seems a bit too hedged. Make it happen and you will feel better. You can do it! When you get a chance you may want to look into a book called "Breaking the Vicious Cycle" which is a little technical, but people with stomach problems live by it with good results. It may be a little bit too much of a change at this point. Good luck and have a great pesach.


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Marcus
 
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member
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4/20/05 2:48 PM
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Ray - you wrote that you are getting migranes. Are you on any medications? maybe it's a side effect? I used to get headaches a lot and my doctoer lowered my dose of mesalamine (pentasa) and i rarely get headaches anymore, B"H. good luck with your "diet" struggles, and a happy and healthy pesach to all!!!
 
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