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.
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?
Volunteering & Me - Crohns and Colitis UK
squirt69
Community member Posts: 1 Listener
Comments
-
Brilliant post @squirt69, thank you for sharing!
-
-
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
-
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
Brightness
Categories
- All Categories
- 13.3K Start here and say hello!
- 7K Coffee lounge
- 101 Games lounge
- 482 Cost of living
- 4.6K Disability rights and campaigning
- 1.9K Research and opportunities
- 230 Community updates
- 9.6K Talk about your situation
- 2.1K Children, parents, and families
- 1.6K Work and employment
- 807 Education
- 1.7K Housing and independent living
- 1.4K Aids, adaptations, and equipment
- 666 Dating, sex, and relationships
- 374 Exercise and accessible facilities
- 845 Transport and travel
- 32K Talk about money
- 4.6K Benefits and financial support
- 5.2K Employment and Support Allowance (ESA)
- 17.2K PIP, DLA, and AA
- 5K Universal Credit (UC)
- 6.4K Talk about your impairment
- 1.8K Cerebral palsy
- 886 Chronic pain and pain management
- 183 Physical and neurological impairments
- 1.1K Autism and neurodiversity
- 1.3K Mental health and wellbeing
- 328 Sensory impairments
- 832 Rare, invisible, and undiagnosed conditions