Shortly after being diagnosed I joined a group called NACC (National Association for Crohn’s & Colitis). I paid a small annual subscription and received quarterly newsletters informing me of ongoing research etc. and local upcoming events. I occasionally attended awareness days run by the South Yorkshire group.
I attended my first Education Day at the Northern General Hospital in 1994 with my parents for emotional & physical support as I had just undergone my first Major surgery 4 weeks prior. I entered the Education Centre cautiously as I wasn’t quite sure what to expect. As I entered the room I had an overwhelming feeling that everyone had stopped what they were doing and turned to look at me. (the scenario of walking into a bar and the piano stops and everyone turns and stares). As I moved further into the room, I began to relax a little and at that point it hit me – I was the youngest their by far and I got the impression that if you hadn’t recently been to the hairdressers for a blow & set or over the age of 60, you didn’t belong there.
Over my 25 years with Crohn’s disease I have undergone 10 major surgeries – including 2 stomas’ (I still have one), a period on a life support machine after my bowels burst and was given only 6 hours to live, but I’m still here alive & kicking. My wardrobe consists of clothes from a size 8 to a size 20. When my illness is at its worst I can lose weight quite dramatically, but then the treatment and steroids kick in and I begin to balloon including my face which they call mooning. At my lightest I was 6 stone and at my heaviest 14 stone. This can have quite an emotional effect on your wellbeing. At the moment I’m somewhere in the middle but try not to worry about my weight.
I also suffer with various illness’ and problems due to the years of medications, surgeries and generally the Crohn’s itself. I have problems with my skin due to damage caused by the sun and the medication. I have had over 400 lumps removed by various techniques before they have a chance to turn cancerous, as 2 have previously turned into skin cancer and led to surgery and skin grafts. I also have osteo arthritis in my joints, AMD (age related molecular degeneration) which may lead to blindness depending how quickly it advances and depression to name a few.
As the years have passed by and the relapses, hospital stays, surgeries and recovery have come and gone I believe my experiences have made me the person I am today and brought out my true personality. I love to meet new people sharing my experiences, encouraging and helping others.
As my personality and confidence has changed so also has NACC and is now called CCUK (Crohn’s & Colitis UK) and their logo colour is now purple.
I have continued to occasionally attend the lectures until about 2 years ago in which I attended a lecture at the NGH to find that things had changed quite dramatically for the better. There were more younger people attending and also helping through volunteering it seemed to have an air of positivity and rejuvenation that filled the room. It was at this meeting I first met Sam Cleasby @sam_scope her talk had left me in tears as the realization hit me of how much I had been through, but not only myself but my nearest and dearest, my family and friends. At this point I felt invigorated and my passion for volunteering began.
I became a South Yorkshire Network Volunteer in 2017 which has helped me continue to grow as a person, given me more confidence and given me a purpose in life. I feel that the things I’ve experienced and learnt have not been in vain. I now know how Crohn’s & Colitis affects people and their friends and family both physically, mentally and emotionally.
Life is too short to allow Inflammatory Bowel Disease (IBD) to dominate, dictate and consume your whole life.
DON’T LIVE WITH IBD – MAKE IBD LIVE WITH YOU!
I absolutely love volunteering and the feeling I get from achieving a successful fund-raising event or awareness event, along with making new friends and sharing experiences. It is so inspiring and motivational to continue. Up to now our South Yorkshire team has raised over £4000. I now look more to the positives in life and love helping other people which maintains my determination in all I do.
I do suffer from Depression which many people with long term illness’ do, but I keep this controlled most of the time by medication. Feeling low can be very destructive to your mind and body. Volunteering always lifts my spirits and my volunteering friends along with people I have met through volunteering are always there for support and to help through the rough times.
Our team holds Coffee mornings every other month which are great for meeting new friends and sharing stories – Usually involving poo, no! its not embarrassing, we all do it, just from different apertures (stoma).
I have a stoma called Bobi, I am not ashamed or embarrassed by him. He saved my life and gave me the courage and determination to be who I am and become a volunteer. My illness does not define me, my strength and courage does, and as I always say: I was given this life because I’m strong enough to live it!
Do you volunteer? What made you start and how has it affected you?
