Who to talk to about Crohns?

[AJC - Australia]

No one in your family will understand, unless they too have Crohns.

Doctors try to understand, but not many people have a nice understanding doctor.

You dont want to talk to your wife/husband about it, it is disgusting.
You dont want to talk to your best friends, they wont understand.

SO, who do you talk to about Crohns??????

Do you have a friend who has crohns that you email???
Do you have someone with Crohns who you sit and talk with???

I think everyone with Crohns needs a friend with Crohns….I have 4 friends with Crohns and I am 39 years old. They are important to me.

#friendswithcrohns

 

[DEmberton]

I looked for an internet forum.:smile:

 

[FrozenGirl]

Yep. Only here do I know anyone with IBD.

 

[Cat-a-Tonic]

I have a co-worker who has UC. He's been in remission for decades and he apparently can eat anything (I've seen him eat salad, pizza, popcorn, nuts at his desk). But he definitely has been there, done that IBD-wise and if I need to talk to someone in person then he's the one I go to. I vent to him a lot but he's really nice and he'll listen and give good advice. He checks in with me a lot too, to see how I'm doing. His cubicle is right near mine and I am so glad he's here, my IBD work friend.

And yes, of course the forum. IBD friends in real life are few and far between, but on here there are thousands of us all supporting each other. I truly don't know what I would do without the forum.

 

[Cross-stitch gal]

I know a few people with IBD. But, here is where I get most of my info. My husband, family and a few friends understand and check on me to see how I'm doing. I do have a good friend who's also a coworker of mine who just recently got diagnosed with Crohn's. So, right now I'm thankful to say that I can be her support if she needs someone to talk to and am hoping she'll join us on here too.

 

[AJC - Australia]

Yep. Only here do I know anyone with IBD.

how are you going getting off the prednisone??

it took me 18 months to get off it.

I was on it for 8 years.
every day.
no good!!!

 

[AJC - Australia]

i agree - this forum is great.
I am from Australia and was stoked when i found it and could relate to others.
In real life, having someone to email, phone or actually (i know this sounds quite 1990s) but actually catch up with face to face and talk - means a lot to me.

Then you dont have to talk to your immediate family about it and burden them with worry about your problems. Of which there are many!

Most of the people i have met with Crohn's are really nice people. Talented. Have a lot to offer the world, but are held back by the disease. (frown)

 

[FrozenGirl]

how are you going getting off the prednisone??

it took me 18 months to get off it.

I was on it for 8 years.
every day.
no good!!!

Hopefully very soon. I am going to see my GI next week to talk about what to add to Remicade to hopefully get me off it asap. 8 years that is crazy. My last time I was on it I was on for 9 months and that was wayy to long.

 

[HangryGinger]

Just people here.