crohn's disease | Imamother

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Forum -> Children's Health

Crohn's disease

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activemom

Thu, Nov 10 2011, 2:12 pm

my 16 year old neice was diagnosed with chrones disease . it has been a bitter battle. she has been prescribed with a steriod called prednisone for a few weeks now the doctor is tapering her off slowly and she has been experiancing hair loss. she is very upset about it. im wondering if anyone has gone thru this and what was done?? a high school girl going thru this is extremley tough escpecially since shes really trying to keep it quiet.

TranquilityAndPeace

Thu, Nov 10 2011, 2:27 pm

Look into the SCD diet. Google it. There is also a woman in Monsey named Rochel Weiss who sells SCD ready made food and does consultations. Refu'ah shlaimah!

amother

Thu, Nov 10 2011, 2:34 pm

I was diagnosed when I was 18. It is tough at first. You go through a lot of shock, denial and anger. But then you get to accept it and it needs a lot of life altering changes. You realize you need to take matters seriously otherwise things will get out of control. I learned the hard way with severe pain, fever and hospitalizations.

She definitely should see a good Doctor that is well versed with crohn's disease. Then I'll mention the magic word DIET. She should figure out what foods bother her and be very very careful! Also there are plenty of alternative treatments that could help like acupuncture and vitamins.

It will take some time till she and her Dr. learns her specific case. No case of crohn's is the the same. For some one medicine works wonders and for others it causes havoc. I for example did very well with an antibiotic that no one would of thought of giving to treat crohns.

Once you get it under control it is possible to live a very active lifestyle.

Lots of good luck and a big Refuah Sheleimah! Hug

amother

Thu, Nov 10 2011, 2:55 pm

There is a new jewish organization that might be heplful.

http://jccsg.blogspot.com/

Also you can check out frumsupport.com

PinkFridge

Thu, Nov 10 2011, 3:59 pm

Yes, it's not easy for a kid.
Her family may want to check out the specific carbohydrate diet at www.breakingtheviciouscycle.com and the digestivewellness site, run by a frum woman. I'm not saying SCD is the only way to go but it works and there is a community of people. Refuah shleima!
Chai Lifeline may have some resources too.

TranquilityAndPeace

Thu, Nov 10 2011, 5:25 pm

Even though there is no cure (yet) for Crohn's, the disease can be in remission for months or years at a time.

Some people are really fine with occasional flare ups once in a blue moon - share that with her to give her chizuk! And one can live a long and productive life with Chrohn's.

Refuah shlaimah.

OOTBubby

Thu, Nov 10 2011, 6:39 pm

DS went through exactly the same thing when he was 20. He wound up needing emergency surgery (resection). Since then (11 years), he has been totally fine with only a very small dose of medication.

BestMomBrooklyn

Thu, Nov 10 2011, 6:59 pm

Yes, PLEASE look up the SCD Diet. I posted a lot of info on the diet. It's been scientifically proven, for 65 years now. I'm on it for 7 years B'H and haven't had an attack since. B'H B'h. no meds, no hospitalizations. There is a teen support group, I beleive. It's impossible to do the diet alone. make sure you get in touch with Mrs. Weiss at digestivewellness.com Hatzlacha.

amother

Thu, Nov 10 2011, 7:00 pm

Another vote for the diet. My brother's been on it for a year and a half now and has been incident-free since.

amother

Thu, Nov 10 2011, 7:15 pm

I was diagnosed with colitis when I was 16, which is in the same family as crohn's. When I got it, I was very depressed and it was a tough time to go through. By now, I've had it half my life and the majority of the time no one would ever know it. I do get a lot of 'you're so skinny' comments, which I try to take with a grain of salt. You think I'll tell the real reason how I 'do' it? I don't 'do' anything.
B"H my flare ups are under control. I've been taking meds for the last 15+ years. I have to do the occasional colonoscopy which is important to screen for pre-cancerous cells and that does suck. But B"H I am happily married and have kids and live a normal life Smile

behappysk

Thu, Nov 10 2011, 7:18 pm

Another vote for the diet. It has changed my life for the better. You can search SCD for more info.
Hatzlacha!

BestMomBrooklyn

Thu, Nov 10 2011, 7:29 pm

B'H I'm happy to see so many people being matzliach with the diet. When I first mentioned it years ago, I was flagged as a spammer.

activemom

Fri, Nov 11 2011, 8:14 am

hi to all . firstly thank you for responding to my post . All of which I shared with my sister. this forum helps us see that were not alone in this and how many people are baruch hashem living a normal life. to all those who have suggested the diets (I greatly appreciate the advice) but right now the doctor is insisting that she must b on the medication to help her heal whats so infected on the inside. the steriod is temporary thing and as she tapering off the doctor put her on "6MP" has anyone ever been on this medication?

OOTBubby

Fri, Nov 11 2011, 8:21 am

activemom wrote:

Yes, DS took 6MP for a while in the beginning (no longer needs it).

BestMomBrooklyn

Fri, Nov 11 2011, 9:11 am

It's important to make sure you are seeing a gastro that supports the SCD diet. These doctors will check up and make sure that you are tapering off the steroids, and having the support you need for the diet. There is a list of SCD-Friendly doctors on the scd website.

amother

Tue, Nov 15 2011, 5:52 pm

This Monday November 21st the JCCSG will have another event which my be very helpful for her.

http://2.bp.blogspot.com/-7LkW.....1.png

behappysk

Wed, Nov 16 2011, 12:39 pm

I was on 6mp meds plus many many others when I started the diet. Gradually I was able to wean off the meds and I'm now b'h of all of them and syptom free.

freidasima

Wed, Nov 16 2011, 1:02 pm

The diet works for some and not for others.
Some like my husband, keep away from dairy and really spicy food but eat everything else and it doesn't make a difference unless he is in the middle of an attack.
First, make sure she has a great gastro, second check if she couldn't use psychological help to get used to this and through it as crohns is for life. Third learn everything you can about it and make sure she gets tested regularly for vitamins and minerals etc. because the absorptions problems can cause problems of absorbing vitamins, calcium, etc.
My husband BTW had has it for close to 50 years and was diagnosed as a teen.

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