Crohn's & Colitis Awareness Week

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

I have been posting things about Crohn's on my facebook for the last few days. Today's post was a link to CCFA for a list of facts and stats
I also shared someone else's post in the UK
Even if its not being commented on, its being seen.
 
That's really great! I think just people finding out its not the same as IBS is huge. I think most people know near to nothing so any bit helps.
 
Yeah, every little gain made helps. But it seems an uncoordinated effort. Know what I mean? Like, here (in my little part of the world) we 'celebrated' (not the best choice of words) Crohns and Colitis Awareness month in November... but it is going head to head for publicity with Mow-vember... So, we had a month (picked by who, why, I don't know) ... and now the US has announced a week... Personally, wouldn't it be better if like the UN (or somebody) requested a world wide day, week, whatever... to put Crohns and Colitis front N center? Or am I totally missing the point with that idea? Thoughts, ideas??
 
New York is going to start an awareness month. (At least I think it's New York) If I remember correctly the governor was encouraging the other states to follow. We have had awareness week for a while now, but this is the first year it was recognized by the Senate. So that itself is progress right?
 
Yes I'm trying to post Facebook and twitter status each day with Crohn's fact. I'm with you at least it's getting seen.
 
Yes NY has awareness month but I think it's largely symbolic. I don't think anything is actually done. Could be wrong.

It's hard to pick times of year. I agree Movember is an issue although that raises colon and prostate cancer which is in IBD territory. Dec 1st was World AIDS day. It's hard to find a good campaign time and effort.

I also think "celebrate crohns" is an absurd slogan. I'm on the toilet as I type this. Yay!
 
I think tomorrow I want to quote people with IBD on Facebook and massive even twitter (I have never prayed anything on theren don't know how)
Anyone want me to quote them? Obviously your real name egotism be used
 
This is going on in the UK too. I know afidz has seen my posts in relation to it. I'm planning a blog post with some myth busting to try and raise more awareness. I know we have a long way to go, but I think any attempt to drive up awareness of IBD and show people it's not just a 'bathroom disease ' or caused by lifestyle is good. I agree that timing is hard. We are often pushed aside for more well known illnesses / charity campaigns.

What kind of quotes are you looking for afidz?
 
I'm not sure. How IBD effects your life, or the pain you deal with. Something eye opening
 
Hope you don't mind that I shared your post on Facebook valleysangel.
 
I don't mind at all, the more people that see it the more awareness we create :).

Hmm..

How about something like -

Crohns disease has been a major part of my life from the age of 15. I fought with doctors for almost 5 years but they couldn't tell me what was causing all my pain. At 19 years old I finally got my answer, Crohn's disease. Since then, Crohn's has taken many things from me, three chances at university, the ability to work and socialize, friends and part of my colon, my appendix and some small intestine during surgery. I fight daily pain and fatigue that healthy people will never understand. I rely on medications that could make my bones brittle, make my hair fall out and shatter my immune system. Theres at least a 50% chance I will need more surgery in the future. My biggest wish right now is to be able to work. I may sound defeated, but I am not. Crohn's has given me a strength I never thought I would have, its taught me how to appreciate the little things and not sweat the small stuff, its taught me the value of true friends and its taught me how to live for now. I have Crohn's disease, it does not have me.

How's that? I don't know if its too long, but thats how i feel about Crohn's right now. You are welcome to use my name / a pic of me if you like. I have been thinking about writing something for the CCUK awareness drive anyway.
 
No problem :) if you don't mind I'll copy it to the CCUK page tomorrow so it gets some views over here too :)
 
Just posted my own VERY brief story on facebook. Biting my nails over here. I generally keep my health to myself and off of facebook.
This is what I said:
IBD Awareness week Day 4-
I don't really talk about my own health on Facebook very much, I don't like to bring people down with me. But in light of awareness week, I will make an exception. In a VERY brief synopsis of the last 7 years of my life. I have been hospitalized more times than I can remember and I have had at least 10 blood transfusions. 6 years I went in for a routine test and woke up with a 12 inch incision and 34 staples. Since then I have had an additional 14 surgeries and I will be going in for at least one more in the spring. For now, I still have my entire colon, but I know one day I won't. The meds I take are protecting my digestive tract from further attack but the side effects that can come along with it can be just as bad. I don't have an immune system to stand on so the cold and flu season is very scary for me. Crohn's effects my joints, my skin and even my eyes. Even in a mild flare, it takes everything in me to drag myself out of bed and pretend that I am ok. What I just explained is the everyday life of a person living with IBD. This is not just a bathroom disease.
 
You should be proud of yourself. It takes a lot of courage to speak openly like that to people who don't understand an iota about our condition. Be proud!
 
SO NERVERACKING lol
There is a girl that I am "friends" with, I have known her pretty much my whole life. She is always complaining about how "sick" she is. I hope she reads it and I hope she decides to stop complaining. I NEVER complain on facebook and I have so much more **** to deal with
 
I hear you. I have a boy just like that on my Facebook, acts like a cold is going to kill him. I hope this gives her some perspective. I find it so strange that the people who are the sickest are often the ones who complain the least.
 
Its because we know that complaining is just a waste of very valuable energy!
 
You are so brave. I'm afraid to let people know what I have been through. It almost sounds unbelievable. I have a friend who said I can't possibly have so much wrong with me.
 

Similar threads

Soryan
PARADIGM SHIFT NEEDED!!!
Replies
1
Views
1K
kiny
kiny
Papantoine
Neglect?
Replies
0
Views
244
Papantoine
Papantoine
colin324
Diagnosed with Primary Sclerosing Cholangitis January 2022
Replies
0
Views
6K
colin324
colin324
kiny
Use of elemental diets in the 70s and early 80s.
Replies
48
Views
5K
pugsNotdrugs
P
my little penguin
Upadacitinib May Best Biologic for Clinical Remission of Ulcerative Colitis
Replies
5
Views
1K
asadmom
A

Latest posts

Back
Top