crohns

by tina
(UK)

my son was diagnosed with crohns early on this year,he is 11 in august and i am still trying to take it all in with whats going on although my son seems to be handling things ok. i was just wondering if anyone can give me any suggestions to help my son and myself.

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by: Kat

I am sorry to hear about your son. I was diagnosed in 2005, a couple of weeks beofre my 11th birthday, which I spent in hospital unable to eat. All I can say is just support your son as you have been doing already :)

I myself had a pretty rough history being in and out of hospital, somtimes for months at a time during early teenage years. I have had pretty much every test and every medication, but it did get better after my illeocecal resection. I am now on azathioprine accompanied by a half diet of enteral nutrition and iron and calcium supplements. I have been in remission for about 2 years now :)
I wish your family all the best, and your soon a lengthly, if not infinite remission.

Strength
by: Rich

I understand completely where you are at right now. At 23 yrs. of age after being married for about 5 yrs. my wife started getting ill. This was along time ago, we've been married for almost 28 yrs. now. She was told by doctors that she was crazy, it was all in her head. No real diagnosis until she almost died from a mass in her abdomen, that was about 18 yrs into it. Anyway, just be as patient as possible. Being that its your child is even harder. Our son,26 yrs. old, was diagnosed 2 yrs. ago and was hospitalied for 2 weeks after losing about 40 lbs. I know it hard but keep as much stress away from your child as possible. It may make you crazy, but its something you've got to do. Learn about the disease as much as possible and try to get them informed also. Most of all BE POSSITIVE. Its so easy for them to get depressed. Try to not let them fall in too deep. It becomes a habit and they will end up thingking they can't do anything. You'll be the one that has to do everything.They will completely be dependent on you. Its not fun!! They need to be strong willed. My son is on Remicade treatments and is doing great. My wife doesn't cope very well as you can probably see from my previous comments. I speak from experience so please consider what advice I've given. If you need to chat email me back or need a shoulder or whatever, I've got a strong one after all these years. I can tell you alot of what NOT to do, unfortunately for myself. I am a christian and that has helped me most of all for strength. Seek out God, he's really there and will give you the strength you need. My email address is richmmed@hotmail.com
Take care and God bless


crohns
by: Lizzie

Hi i am so sorry to hear about your son it must be so hard for you and you must have so many questions, i am 32 years old and got diagnosed whaen i was 20 years old, i have two lovely children myself with my eldest being the same age as my son she is currrently having investigations to see if she also has chrons.

I will be honest with you it is a very nast illness to have and no one realy understands the illness untill you or someone very close to you has it, you are very tired and it does come along with a number of other problems but there can also be very good times, for instance in 2009 i spent 3 mths in hospital then at the end of the 3 mths had my secound operation to try and remove the diesease the operation was not succesfull and up untill october 2010 have been having majour problems i have tried inflixamab, methatrexate and humira with no success but low and behold since october i have gone into remision if like magic yes i am still on 30mg steriods daily but life is fantastic i have had a brilliant xmas with my family and just hope i can get as much time as possible before i am ill again.....

Really what i am saying is yes it is a nasty illness and there is not much support out there for children with it but please feel free to email me should you want to talk or have any questions - matthewatkinson103@btinternet.com

Keep positive for you and your family xx

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