Story
I have lived with Crohn’s since being diagnosed on my 12th
birthday in 2001 – Mark has lived with it since meeting me in July 2014!
Now, at the age of 27, I take 8 tablets a day called Pentasa and
go into hospital every 6 weeks for an intravenous infusion called Infliximab –I am currently in a flare-up which started in 2013.
The illness affects me physically with abdominal pain, chronic
fatigue, mouth ulcers, aching joints, and constantly needing to be close to a bathroom. It also affects me emotionally having periods of times when I feel very low and lose all my self-confidence.
Crohn’s has had an impact on everyone close to me – my parents, my brother, my friends and, of course, Mark. My social life stops; I have left jobs, I let people down at the last minute because I want to live a ‘normal’ life and so I make plans to meet up with friends – but sometimes am so unwell that I cannot even get dressed; it becomes a vicious circle.
It’s frustrating: People mean well when they say “you look so well” - they cannot see inside my gut or cannot know that it’s taken me 3 days to get ready (mentally and physically) to meet up with them! Although well meaning, suggestions that Manuka honey, Aloe Vera or even eating tree bark will cure my Crohn’s are not helpful. For me there are no dietary triggers that set off an attack as I have undergone in-depth investigations to eliminate this.
It’s debilitating: I don’t want to let people down at the last minute – I want to go to the cinema, do a full day’s work, get to work on
public transport without spending a fortune on cabs because I'm afraid I might have an accident, go out to eat or even stay over at friends’ houses . At times, I can do some of these things – at other
times, I'm housebound because of my symptoms.
In my 15 years of Crohn’s, 6 of which were pain/medication free
I managed to live a “normal” life. As Crohn’s is an auto-immune disease the symptoms and flare ups are unpredictable. I could wake up tomorrow and be in remission for the rest of my life or I could be back in hospital. This is what others struggle to understand.
Crohn’s is not going to beat me!! With Mark’s commitment and support, I have maintained a loving relationship for almost two years. Together we have been on holidays, met new people and he has first-hand experience of life with a Crohn’s sufferer. With him, I am not embarrassed or ashamed. He never gets annoyed when I make last minute cancellations. He always encourages me to push through the pain barriers and take one day at a time.
We would like you to pledge to our page to help the fight, on behalf of all sufferers, against this disease and help donate as much as possible to Crohn's and Colitis UK.
Thank you for taking the time to donate.
Lucy & Mark xxx
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