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Volunteering & Me - Crohns and Colitis UK

squirt69squirt69 Posts: 1Member Listener
My name is Natalie Davis and I have lived in Sheffield all of my life. I am 46 years old and was diagnosed with Crohn’s Disease in 1993 which means I have been living with Crohn’s for over 25 years. Today, I'm talking about my experience of volunteering and how it has affected me.

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.

woman sat behind a stall for crohns and colitis uk with purple hair and a purple tshirt

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.

group image of crohns and colitis uk volunteers wearing purple tshirts

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.

two women one is dressed in a poo emoji onesie and one in a purple crohns and colitis uk tshirt

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? 
 
 
 
 
 
 
 
 

Replies

  • Pippa_ScopePippa_Scope Posts: 5,858Member Brian Blessed
    Brilliant post @squirt69, thank you for sharing!
  • Deb_ScopeDeb_Scope Posts: 88Member, Administrator Scope community team
    Excellent post @squirt69 :)

    Debbie
    Online Community Manager
  • margaret12margaret12 Posts: 5Member Listener
    Thank you sharing I have a stoma not through illnesses but a mistake that happened when I was a day case patient I have had 5 ops to repair prior ones that have went wrong my life has been turned upside down with it to date I have been told I need another op but they are not sure about doing as I will not come through it due to my Ill health I have tryed to talk to someone about all this but I don’t think they understand I have a partner and he has been there for me but he also is missing out on things we used to do I would really love to have chat with someone who understands what I’m going through to see if I can make sense of it all and try to live my life the way I used to 
  • Sam_ScopeSam_Scope Posts: 7,147Administrator Scope community team
    Hi @margaret12
    I have had a stoma for over 5 years now so do let me know if I can help at all. I would also recommend the IA Support  who offer support for anyone with an ileostomy or an internal pouch and the Colostomy Association  who support anyone with a stoma.
    Scope
    Senior online community officer
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