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Kids with jpouch?

Fri, June 20, 2008 12:00 AM

Hello. My son Sam was diagnosed with UC at 19 mos. and had a total colectomy and jpouch surgery 3 days after his 2nd birthday. He is now 7 years old and just completed the 1st grade. It has been a very long and difficult recovery, more the first few years, then now. I am looking to connect with parents who have similar situations. My son is very healthy now, but suffers from chronic pouchitis and is stressed by his condition on a daily basis. Anyone????

Tricia

mom to Sam 7, Max & Jake 4

tricia
Joined Jun 20, 2008

Sun, June 22, 2008 12:00 AM

Reply posted for Tricia.

Hi Tricia,

We live in Wethersfield, Connecticut. It's about an hour and a half from Sommerville.

Andrea

nickmom
Joined Jun 21, 2008

Sat, June 21, 2008 12:00 AM

Reply posted for nickmom.

Hi Andrea,

Thanks for replying. Where do you live? We are in Somerville, MA.

tricia
Joined Jun 20, 2008

Sat, June 21, 2008 12:00 AM

Reply posted for Tricia.

Hi Tricia,

My heart goes out to you and Sam. My situation is similar in that my son, Nicholas is also seven and has also just finished first grade. He received his Crohn's Disease diagnosis at 19 months of age.

To date, he hasn't had any surgeries but has been receiving Remicade since he was two year old. The Remicade is of great help to him but it hasn't prevented all flares. Flares are always stressful.

He has a Section 504 Plan at school so he is able to use the bathroom without asking which reduces his stress level. Having the school community on the same page really helps.

Nicholas loves Taekwondo which has given him a great outlet for his stress.

He also is fascinated by sharks so we do research on the web and take out books from the library for him to read.

We've had some difficult days too. Nicholas does seem more at ease when he is doing things he enjoys. I think he feels like he has more control of his life, while he lives with a disease that can often control how he feels physically and emotionally.

If you ever need to talk, I'm here.

Andrea

nickmom
Joined Jun 21, 2008

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