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Crohn's Disease Forum » Your Story » Raising Awareness of IBD


04-18-2015, 03:37 AM   #1
Cuemel
 
Join Date: Apr 2015
Location: Lincoln, United Kingdom
Raising Awareness of IBD

Hello all,

Not sure if this is the right place to be posting but hopefully can get a little bit of feedback.

I come from a family with a history of crohns and various other IBD's from both sides. My Granddad has a colostomy bag and my Gran on the other side suffered from a variety of very serious bowel related issues, and now my oldest sister has just been diagnosed with colitis.
Sadly my partner is the same and pretty much every member of his family have the same sort of issues.

Just over a year and a half ago, my partners brother became very ill, he was spending all of his time on the toilet (sorry if tmi) couldn't eat anything and couldn't work, he spent so much time at the doctors / hospital or alone in his room. He had a fantastic specialist, over the course of a year he tried variety of drugs to control the issues he had, before diagnosis. Over this time he looked so poorly, he lost so much weight and was just not himself, it was and incredibly worrying time.
He was eventually diagnosed with Ulcerative Colitis and is now on the final type of drug he can try before the final option of surgery.

We have learnt so much about IBD over the last year and a half and the information and support available for this is unbelievable.

We are looking to raise awareness for this illness that it appears so many people suffer from in silence, and in turn raise some funds for various charities and organisations.

We are looking to release a song in aid of IBD and would like some opinions of what you think of this approach. My Partner is a new artist and has created a good buzz around himself with the release of his first music video (you can see it on youtube if you search for Scott Ballard - Conscript Me or look for sballardtube).

The next song he would like to release in July is in aid of IBD, was written a song for his brother and it is wonderful.

Another thing we would like to do is have people that suffer from IBD in the video, it would be fabulous to involve as many people as possible.

What are your thoughts on this as a way of raising awareness?

Thank you for your response in advance.
04-18-2015, 11:20 PM   #2
Jennifer
Adminstrator
 
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Hello and welcome to the forum.

Were you just looking for members to share a photo of themselves?
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
04-19-2015, 01:44 PM   #3
nitty
Senior Member
 
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Join Date: Dec 2011
Location: United Kingdom

My Support Groups:
Have you seen the website 'So Bad Ass'? It is written by a lady from Sheffield who has UC, and her husband has connections with the music industry. It may be worth you having a look around her blog as she is very keen on promoting all sorts of issues and awareness of IBD and may be able to give you advice based on their own experiences in the business.
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