Hi my name is
Peter. I have had Crohn's Disease since
2006; maybe a long time before that. After finding out how badly damaged my
small bowel was after a number of tests and investigations, a full diagnosis was made in 2006.
The beginning of my
journey with Crohn's Disease was a very bad experience, since I knew virtually
nothing about the condition, to find out that this was going to be with me
for life
was a very daunting prospect.
I went through all
the normal drugs and treatments but as many of you are aware some people suffer
from a flare up from time to time and the first line drugs can help put you
back in remission. For me these first and second line drugs just don't cut the mustard. The most
important thing I have found to deal with this condition is to keep a positive
attitude and support.
So after surgery in
2007, I enjoyed a five year remission. Looking back I was very fortunate for
this to happen but surgery did leave me with other problems. I was left with
permanently loose stools but this was relatively easy for me to cope with in
comparison to the horrible pain I had
endured before surgery.
In 2012 my Crohn's
Disease came back. Six months of tests and investigations revealed inflammation
and ulceration on the site of my previous surgery. During this time I decided
that I would not just sit back and do nothing. IBD can leave you feeling very
isolated and even depressed since you lose so much weight and fatigue starts to
set in - to the point that you don't want to leave the house. So, it was time
for me to try and spread the awareness of this challenging disease. How was I
going to do it? I pondered for a while.
I decided to set up
a website devoted to Crohn's disease. It had been fifteen years since I had
last created a website but I was determined to try and create a platform for me
to help people who were suffering as I was. I created a very basic website www.crohnsdiseasesupport.co.uk and followed that up
with a Facebook page and Twitter account. To my amazement I got hundreds and
then thousands of visitors to my site. I
was very reluctant, at first, to bare all about my condition and story to the
world but I found the more I shared my journey, the more people wanted to share
their experience with me. I also found it a great way to let off steam and got
so involved with creating the website that I found it much easier to get
through my dark days.
The website was so
successful in getting my message of support across to others that I then developed
and ran my own professional website www.crohnsupport.com
 |
| The website gets over 1,000 views per month. |
The website would
not be as sucessful as it is without the support of my fellow Crohnie brothers
and sisters.
The biggest help to
me was joining a Facebook support group called Bowel Disease One Global Family.
I met so many amazing patients that were willing to share their experience and
knowledge with others. It was, and still is, a truly inspirational group. If
you just reach out for support there are so many patients willing to support
each other.
With the support of
fellow patients and the IBD specialist nurse service at my local hospital, life is now much easier. What I find
heart-warming is that, even in the clutches of this disease, I have someone to turn to for support - even
if it's just a simple question of how best to prepare for an investigation. I
know I will get some great advice or support whilst I am preparing. I think it's just so important to know that I
have support from patients that have been in my shoes and their advice and
support is always valued.
My overall message
to anyone diagnosed with IBD (Crohn's Disease or Ulcerative Colitis) is to talk
to your IBD nurse if your condition worsens. Don't wait for your next
appointment, these angels can get you the right care at the right time. Most of
all they understand the condition, unlike many doctors. They are specially
trained to care for people with IBD. Please don't be alone, get support from
other patients, they know how you feel and can help you get through some of the
tough times. I am very lucky to have an amazing wife, family and friends whom I
can talk to but talking to another patient who is willing to share their
experience with IBD is really amazing.
Thanks for reading
and get some support "patient to patient is the best medicine".
Peter Buckley
70% of young people in 2007 when surveyed by the charity stated "Fatigue” as their most noticeable symptom. As a result we won £500,000 from the Big Lottery Fund to investigate Fatigue further.
