What have you done lately?

[butt-eze]

What have you done for Crohn's lately?

For those of us who are healthy (or as good as it gets):

What are you doing to make a difference? Have you shared your story with people? Have you raised money? Have you volunteered to support youth/spouses/newly diagnosed?

With a friend in the hospital I am reminded that we can't stop fighting. I might be lucky to be in remission but she is suffering and the crohn's isn't helping.

We need to fight this battle together.

What have you done lately??????

 

[jed]

i've directed a guy at work to this website who's just been diagnosed.

poor bugger has had a lot of time off work lately, trying to give him advice when ever he wants it.

 

[butt-eze]

Bravo Jed!!!

 

[jed]

GO PEN!

we dont have any foundation or donation places over here for this.

 

[butt-eze]

Go Pen!!!

When I was first diagnosed that felt I was helping out by just buying "Got Guts" bracelets. I gave them to everyone I know!

Great to hear people being pro-active.

 

[Jeff D.]

I have been telling people who have stomach problems to come on here but I don't think they have come onto the forum. I'm talking to who my Biology is going to be and I'm going to try an experiment with Crohn's Disease to see how exercise effects Crohn's.

 

[Guest]

i haven't done much in this respect lately, mainly because i've been struggling through my days with one thing and another, although i did give the forum link to someone 2 weeks ago.

however, years ago, i joined a local support group, and became the secretary for our branch, plus attended a course to enable me to counsel & visit patients in hospital or their own homes, prior to or just after surgery. i did this for years, and loved every minute - felt like i was giving something back, and also banishing that feeling of being alone for the patients i saw, which i had felt myself.

 

[jed]

Jed, they dont have anything there??

we have a small website, and i think theres a support group for all bowel problems (from cancer to crohns to hemmies), but no forums like this in my local area.

your right, some more media attention might not be a bad idea. maybe i'll speak to the editor at work (i work for the newscorp newspaper in my state).....

 

[Jeff D.]

I have emailed the Rachael Ray show a few weeks ago to talk about Crohn's but I never got a response.

A few years ago we tried to email the Oprah Winfrey show and i don't think any of us got a response back so we eventually stopped trying. I emailed that show at least 3 times.

Maybe we should get something like that going again.

 

[Kev]

In order to get that support, to get e-mails read, things moving... you literally have to know someone. I think I read/heard someplace that Kelsey Grammars wife has either IBD or IBS... anyone know any members of Mr Grammers fan club?

 

[butt-eze]

Dingbat! I would love to do what you did. I'm not sure if we have a program like that around here. I have always wanted to provide that exact type of support for people with IBD. Please let me know more!

 

[Guest]

Amy - next time you're anywhere near your hospital, try going up to the surgical wards (or gastro-specific wards) and have a word with a senior staff member there - that's how i did it. they put my name on a list, and would call me if someone was admitted pre-op & they felt needed a chat, or if somebody had already had surgery but wasn't coping well emotionally.

good luck! it's a lovely thing to do, and mutually rewarding

 

[FruitLoop]

Once a month I man the NACC telephone line which provides support for IBD sufferers.

It's called Nacc in contact.

I did the last one on Monday.

It's voluntary- we signpost callers to appropriate organisations and offer support to empower people to achieve the best treatment.

 

[BWS1982]

I wish I felt up to doing more. I guess in retrospect the only thing I've done about awareness is complain and explain the horrors of this disease to any acquintences who ask me how I've been lately. I start with "Well, I've got Crohns disease and.......". I really don't do it for sympathy, but want people to know the facts.

I guess the effect has probably been "have you heard about Benson?" ...."Yeah, that Crohns disease is all he talks about, he's b*tching and moaning about a laundry list of symptoms and complications and how it tore his life apart"..."I know, I sure as hell dont want that, better watch our ***** for blood, first sign of turning into him and I'm making a B line to the hospital"

 

[Rosemarie]

Ive donated money to CCFA... and sponsered a few walkers in the Crohns and Colitis walks they are doing in a few different states. I've counseled new patients and given advice online. I really wish I could do more! Ive been wanting to volunteer to be a camp counseler at camp oasis (for kids with crohns/colitis) since I was diagnosed... But I live really far away from the camp. Maybe next summer since its to late to plan that trip this year...

 

[butt-eze]

Great idea Dingbat. I will check that out next time I'm at the hospital. Which is somewhat often just because I work in the medical field.
Do you think it would be an issue that I haven't had surgery for my crohn's???

I think doing the calls would be good too. One time I called the CCFA and when they asked how they could help I said, "I have crohn's. Can you tell me the cure please?" They thought I was serious until I told them who was calling. Luckily I volunteer for them so they knew who I was when I stopped laughing.

 

[Guest]

i think your knowledge of living with Crohns would still be very valuable to anyone newly diagnosed, & who passes through the hospital ward system, Amy. give it a go & see what happens - they may direct you to another department where you can register your interest in this kind of thing. good luck

 

[Isla]

I try to keep the focus of my life off my medical woes. Personally I love medical research and hearing everyones story but my time is limited (what with being a single mom and running my own business.) So I volunteer on my neighborhood association's board and I was elected to my daughter's school council. It's a way for me to not be so isolated, get out there and be a productive member of society, and hopefully teach my daughter that you must always give something back. Maybe when she is older her and I can start volunteering at places we both feel need it.

 

[Babe123]

i havnt really done alot.. any one got any ideas of what i could do as i would like to do something

i have signed up to be a first responder if that counts ?
x

 

[Babe123]

thank you Pen.. the anti sickness tabs have stopped working on me so going to see my gp tday cos he is back

I dont know ho wi will cope being a first responder.. i get quesy very easily. i fainted after watching a colestomy bag being changed for the first time in a really really hot room. so im not sure if it was the heat or not. i suppose you get used to seeing things after a wile
x