Set up by Clayton-Le-Woods hairdresser Victoria Danson in April 2017, Lancashire Crohn’s and Colitis Support Group is celebrating FIVE years of success this year.
32 year old Victoria, who was diagnosed with Crohn’s aged 19, and has been an OstoMate for eight years said: “It was only after I had my surgery to have my bowel removed and live with a stoma that I realised there wasn't really any support outside of the clinical setting of the hospital. So I decided to start Lancashire Crohn’s and Colitis Support Group to bring people together who are on the same journey, living with IBD, or a stoma, so they felt like they weren't isolated, and could talk to people who understood what they were going through.”
When the group started there was only two members, but now membership has grown greatly, with people travelling to Chorley from all over Lancashire, including Preston, Blackburn and Fylde.
Whilst the group allows members to share stories, discuss anxieties, attend Stoma workshops and listen to advice from informative speakers, externally they also do educational training about IBD with nursing, pharmaceutical and social care students at the University of Central Lancashire (UCLan), and have made steps to further spread their body positive message.
Mum of one Victoria explained: “When I had to shut my hairdressing business last year, I put all my efforts into this, and I put myself on the biggest billboard in Manchester with my bag out, which I’d never even shared a picture of on social media before but I just wanted to empower people because there's still people out there who are really afraid of having surgery or think that life won't go on after living with Crohn's, I just want to show people that you can achieve whatever you want.
“The next step now is I’m wanting to open a holistic centre, somewhere where people can come after hospital. It will have things like yoga, pilates, counselling, massage, relaxation workshops, to help people regain their confidence after being told that they're going to live with a lifelong condition or after they've had surgery, and they're going to have a stoma, which is life changing again, because it's body image.
“After I had my surgery, I really struggled with my own body image, so going to the gym made me feel stronger, more competent, and that helped me on my journey. I'm just trying to be who I needed 13 years ago, and fundraisers are so important to gain charitable status and help others with their confidence.”
To apply for the funding for this centre, Lancashire Crohn’s and Colitis Support Group will need charitable status, which requires an annual income of £5000.
One of the group’s trustees, Kelly Bracewell, a research fellow at UCLan, and patient with Ulcerative Colitis, has organised a sponsored exercise circuit tomorrow to help kick of their fundraising goal.
34 year old Kelly, who is from Bamber Bridge, said: “It's got to the point where we can't keep doing everything ourselves, in our own time, with our own money. We need to go for charity status so that we can apply for funding because there's a massive gap in service. National research by IBD UK shows that across the country, health support and care for IBD is dire, particularly around mental health and nutrition support, but in Chorley, South Ribble and Preston, it’s even worse, we're not even meeting the national average.
"And so Victoria’s having to put her little boy to bed after a day of work, then ring people to give them emotional support and advice. Recently, she had to chair the meeting from hospital because she wasn't well enough, so it's not sustainable, as it is.”
Taking place at Bamber Bridge Leisure Centre, who have offered to host the event for free, Kelly, Victoria and their friends will take part in free sessions led by circuit trainers, Alan Pearson, Mark Pearson and Ian Partington, and so far, the JustGiving link has raised over £1200.
Kelly, who also volunteers with Tender Nursing Care, Pug Rescue and Domestic Abuse groups said: “Since I've been doing this fundraiser, the amount of people that have contacted me to say a family member has Crohn's or Colitis, and they didn't know there was a support group, they don't talk about it, is huge. Nobody realises that actually, they can get support, and there is light at the end of the tunnel.”
For Kelly it took over a year for her IBD to be diagnosed as she did not have the “typical symptoms”, and she knows how vital the group’s support will be for others in Lancashire.
She said: “The hospital were just like, here's some pictures of the the inside of your bowels, and here's some tablets for daily maintenance, and that was that, there wasn't really any support.
"Two months later, my mom saw an advert in the Lancashire Post about Victoria’s new group, and so I went along, because I just felt really isolated.
“I was a healthy 25/26 year old going out drinking, starting my career, I just bought a house, and then all of a sudden I had this thing, and I didn't know what it was and didn't really know who to talk to about it, so I just went along to see what it was like, and I've been going ever since.
"Victoria has been a key part of my journey and her determination means the best is yet to come for patients in Lancashire."