Hey everybody, long time sufferer, first time forum member

[muppet]

I've had Crohn's myself for 28 years and I've been the father of a little girl with Crohn's for 13 years (10 since her diagnosis). So, she's not so little anymore.

Looking forward to offering and receiving advice, maybe commiserating a little. I've been doing this on my own for a LONG time because honestly I never really saw the value in support communities, but I'm getting wiser in my old age.

Here's Sarah's (very long winded) story:

http://www.sarah-story.com

 

[Crohn's Mom]

Wow, muppet I've just finished reading Sarah's story...poor girl has really been through it in her little life.
She sounds like such a strong young lady, and loving big sister!
and...

:birthday2::birthday2:

Happy 13th Birthday To Sarah!
She must be so excited to be a teenager ! (maybe dad not so much :lol

Have you made a decision about the Humira yet? There is a sub forum here from lots of experienced users that have had a great experience on it.
Or are you possibly leaning more towards a colectomy?
From your story, it sounds like the surgery may end up being the best option for her, but I can certainly understand your hesitations. It's a big decision.

Your doing a wonderful job dad.
How is your CD holding up? Do you take maintenance meds along with controlling your own diet ?

It will be nice to have your experience around here, so Welcome and I hope we see you around more !

:ghug:
~T~

 

[muppet]

Sadly my Crohn's is in really bad shape and I'm on 20mg prednisone daily (self prescribed. OOH BAD DAD I KNOW) which is actually a pretty high dose for me. I'm just so stressed out over Sarah and other issues that it's inevitable right now.

I'm terrified of the Humira because of the effects of the Remicade. I also think Colectomy is a TERRIBLE idea for Sarah. So, I'm at an impasse. I'm paralyzed by terrible options.

 

[vness1208]

hey muppet, Im so srry for everything your family has been going through. I also have a 13yr old daughter w/ chrohns & have been dealing w/ this on my own so I can relate. I know its been tough time for you all but things will start to look up , hopefully sooner than later. I hope you all get the treatment you need and things start getting better for yall. best wishes and good luck.

also would like to wish Sarah a HAPPY BIRTHDAY!! bless her heart

 

[Dexky]

Welcome Muppet!! I read Sarah's story. She must be an amazingly strong little lady! I hope the dietary changes will help her maintain something at least close to remission if not complete remission. I've always thought it counter-intuitive to hear or read docs say diet doesn't affect crohns. Diet affects everyone else's health!! How could it not have a magnified effect in an inflamed bowel??

I know the last thing you want to consider is colostomy but that option has been miraculous for many. I'm sure you have no trouble navigating this site so you're aware of the stoma subforum. There are just so many who have, like Sarah, not responded or had horrible reactions to conventional meds who've been given their lives back after surgery. I'm equally sure you've at least looked into the future possibility of stem cell therapy. Sarah's young and the future looks bright!

 

[DustyKat]

Hi Muppet and :welcome:

Oh my goodness, Sarah certainly has been through the wringer, poor love. As Dex has mentioned, perhaps a stem cell transplant may be a future option. Have a read of Ziggy's thread about his stem cell story.

I hear you about the decisions and since surgery is something that you feel is out of question at this point then I think going down the Humira path is best. The reason I say that is, if surgery does indeed become your only option you won't be left with the what if's after the fact. I think you will rest easier in your own mind knowing that you have exhausted all other avenues.

I agree that diet plays a role in helping keep symptoms under control but with the severity of your daughters disease I do feel it is going to need to be done in conjunction with something else.

Good luck with Sarah's treatments and the decisions you will need to make. We all understand what a very difficult and heartbreaking time this is for you. Above all keep us posted and a very happy belated birthday to Sarah!...

Much love, :heart:
Dusty. xxxxxxxx