Urostomy Awareness Campaign

Urostomy Awareness Campaign

Many of you may be aware of a campaign that was launched last week featuring a poster with 24 AMAZINGLY BRAVE men and women who were ROCKING their Urostomy Bags! First off I want to give a huge thank you to everybody who got involved with the poster. For some people, this was their FIRST ever picture with their bag out!

On the whole, we have experienced an amazing level of support from stoma buddies, top stoma companies, Urology and Colorectal Consultants,  Stoma Nurses, Urology newsletters and some Urology journals.  On Monday I have an interview with Bournemouth Echo which is amazing we may be able to get it into the public stream and maybe into the national press!

We are BEAUTIFUL,

We are BRAVE,

We are WARRIORS and most of all

We are SURVIVOURS!!!!!!!!! 

rsz urostomy awareness campaign final

A Bit about why we started this campaign!

Ok, so most of you may already know that I am a ‘Double Bagger.’ I have an Ileostomy and Urostomy and this has made me aware that there is a huge difference in the awareness of the use of Urostomies.

Let me explain... the majority of the General Public have heard of a ‘Colostomy’ and even an ‘Ileostomy’ and due to this they believe that stomas are only for poop. Which they definitely are BUT they can also be used for wee...in the form of a Urostomy. If anybody has a family member who has had bladder cancer, been through trauma, neurological conditions or birth defects may already be aware of this, but there is a HUGE number of people who are not aware of the use of or benefits of a urostomy! Not just the General Public but also among the Medical Profession! I am a regular inpatient, a number of times Nurses and Doctors think I have a catheter and have not heard of a Urostomy before is quite shocking. I came out of the hospital a week and a half ago and after encountering this for the umpteenth time I was adamant WE AS A COMMUNITY OF UROSTOMATES had to do something!

Since I started my blog in January I have talked about a Urostomy Awareness Campaign. Many times I would complain to the Youtube Show Girls about the Medical professionals who don’t  know a stoma can be for wee!

I have mentioned this before, but as us, Urostomates can sometimes be the forgotten group amongst ostomates. In the Uk, there are only 10,000 of us compared to 60,000 people with colostomies. Like a middle child that can sometimes be swamped by the other 2 and forgotten we realised it was about time, we started stamping our feet harder to be heard!!!

I was very adamant that I didn’t just want this to be a picture of myself for the poster showing awareness. At the end of the day, we are a COMMUNITY! I wanted to show that TOGETHER ‘WE’ can not ‘I’

How we got the poster together

I contacted my ‘Double Bagger’ buddy Louise Pearce and told her how determined I was to set up a campaign but was at a loss where to start! For months I had been racking my brain and didn’t know really where to start! She is brilliant and used to be a nurse and came up with the amazing hashtag #WEEBAGSUNITE! Which is fantastic? Again with her being a Double Bagger she also saw a difference in knowledge amongst the General  Public and the medical professionals. Now it is time that we try to challenge this!

The original thought was that we get this poster ready for the BIG Urology Surgeons Conference on the 26th June. I had left the hospital Friday and since we decided that I had just 2 DAYS to get pictures of Urostomates.

So how did we go about achievingUrostomatesPictures

We couldn’t have done it without the amazing ‘Urostomy Awareness Group.’ Thank you, Phil and Pam, for allowing me to post an urgent request for anybody that wanted to get involved.  We also posted in the ‘Double Bagger Ostomy Support Group’ as well and with the 2 groups, I was amazed at the level of support and a number of people that got involved! I also cannot forget the other general stoma groups that also allowed me to share ‘Making Ostomies Cool’ and of course ‘IBD and Ostomy’ group.

Like I said we got 24 people in just 2 days from putting a request on the groups. Then a poster was composed! If we had done it over a longer period I believe we would have got a LOT more people sending in their pictures!

We were both so overwhelmed with the response that I started to feel really anxious in case I had missed anybody out when the emails started rolling in. Trust me this is not going to be the last campaign so watch this space...WE will be heard!!

I am not a computer professional and trust me I was naive in thinking ‘oh it will only take 2 hours’ It took me all of Sunday to get all the pictures in line and I even had my step-daughter help me. There were a few swear words from me. They were coming out in frustration which by the end I had to give Molly 5 pounds for the swear jar!

The Youtube showgirls were right behind me and when I felt like throwing in the towel. After some strong resistance from one faction, the girls and Louise gave me a good talking to and my mojo was back!

I would just like to point out that the reason I included “Not ALL stomas are to do with poop!” is because we are not known and i needed something short and sweet that could highlight Urostomies. By no means was I trying to say that Urostomates are better than others. I have both so obviously I do not think this. All the advocates in the community have been behind me and very supportive to try and get more awareness for us. So thank you to all the advocates out there who have shared, tweeted and helped...kudos to them. There is a big gap regarding Urostomates. Even amongst blogging so far I am the only current blogger out there with a Urostomy and I can’t do it by myself! I need help! so we can start covering topics related to Urostomies and help one another continue to be survivors!

Conclusion

As you can see I am very passionate and driven about highlighting Urostomy Awareness.  This was by no means an individual thing this could not have happened without the wonderful, brave people that sent me their picture and confirmation.  The amazing support for ALL Ostomates and their encouragement, by the groups and friends. We will be heard!! It may take us a few campaigns! but we will slowly as a community start challenging taboos and knowledge.

So a huge Thank you to EVERYBODY! that has helped to make this happen! Im very grateful to be part of the Ostomate Community and I can honestly say I now have amazing friends that are like family. All because I started my blog in January to help others but never in my wildest dreams did I realise how much it would help me!!

 

Written by : Rachel Jury

1000 Characters left