Mother trying to learn

[TN_Mom]

Hey everyone,

My daughter was diagnosed with crohns disease several months ago. I've been researching as much as I can about the disease and though I think I have a good grasp on it. This forum and the Humira forum seem like great places to learn about peoples personal experiences. I want my daughter to sign up, however she is a bit shy about it right now. I guess my first question is how do I help my child become more comfortable or as comfortable as possible with this disease? What should we expect in the first year?

Thanks.

[brenda]

Hi! I'm a mom who is always trying to find out answers, too...I wonder whether you have heard of WeAreCrohns.org - The Social Support Network for People Living with Crohn's Disease and Colitis

It's a social-networking site also, and there are people from all over the worls, of all ages. MY daughter will not post a profile there YET and I suspect she is still living in uncertainty and fear. It's overwhelming, I know.

One teeny suggestion for you is to read as much as you can but NEVER get pre-occupied or overwhelmed with the horror stories. Every patient is different and there are a host of ways to deal with each day.

I always come to sites to find out how others are dealing with this...but the biggest thing of all is that THEY own the disease. I tell my daughter that I will fight shoulder-to-shoulder with her after I've lead the attack when she's too weak...

Please know that you are not alone. Know that God sends us no more than we can bear. Know that there is always light at the end and if there is no light, then it is not the end...

Wishing you peace and love,

~brenda

[Crohnsmom0916]

Hi,
I too have a daughter with Crohns, she was diagnosed 4 years ago, when she was 12 years old. It is a battle to find what works best. She has been shy about going online to talk about her disease as well. She keeps alot to herself, only talks to me about her struggles. My advice is to be her strongest advocate. I always question her doctors, and educate myself on the disease and the medications. I believe you will teach her to cope by your example. I just found out about this site and hope to find out much more info about the effects of Remicade, directly from people dealing with it. Is your daughter taking remicade now? My daughter has been taking it since June 2007.
Kathy

[crohnievballer92]

how old is she? i was 14 when i was dx and i was going into my first year of high school. It is hard to adjust to having crohns but it's mainly the medication that gets to me. i hated taking prednisone and it just made me even more self concious. tell her that she shouldn't be shy and it is a great motivator in life. it just makes me want to do more just to prove to myself that i can be stonger than this disease. i am almost 16, so if she wants to talk to me i wouldn't mind! my email is lindsaymrose@msn.com

[amnsreid]

Originally Posted by TN_Mom

Hey everyone,

My daughter was diagnosed with crohns disease several months ago. I've been researching as much as I can about the disease and though I think I have a good grasp on it. This forum and the Humira forum seem like great places to learn about peoples personal experiences. I want my daughter to sign up, however she is a bit shy about it right now. I guess my first question is how do I help my child become more comfortable or as comfortable as possible with this disease? What should we expect in the first year?

Thanks.

My daughter was diagnosed last year with crohns she had just turned 13. She is now 14 and doing much better. The doctors wanted to put her on 6MP and after much research I refused, we took the pred/Pentasa route keeping her on the pred as short as possible as she had some pretty severe side effects. I took a more natural approach and talked to several people I knew with crohns. I put her on AMP Floracel, Vitamin D, multi-vitamin, fish-oil, iron and Pentasa (1500 mg/day) I did change her diet for over a year. Now that she is still feeling well and growing again she is adding some of the fobidden food back into her diet. I was glued to this computer for a long time and did find that different things work for different people. Keep the faith you will find something that works for her and will make her feel better. I have to tell you that first year is a blur and my daughter was so tired all the time that she really did not want to hang with her friends or attend her sporting activities. She is back to her old self and is pretty open about crohns with her friends and family and back to her active girl. I wish you much success with the route you choose for your daughter! Good Luck on your journey...

[crohnievballer92]

forbidden food!!! yummm haha. i'm glad that she is back on track and is enjoying her teenage years!!