Showing posts with label personal experiences Crohn's Colitis. Show all posts
Showing posts with label personal experiences Crohn's Colitis. Show all posts

Tuesday, 10 December 2013

Personal Voices

Personal voicesEvery patient's experience of Crohn's and Colitis is different. Our website and booklet tells the story of just some of the UK's 240,000 children, teenagers and adults who have the conditions.
Read about their personal experiences below or download our Personal voices booklet (PDF).
Catherine's story
Catherine's story
Derek’s mum Catherine was diagnosed with Crohn’s at the age of 16 and, although she defied medical advice to have two children, she was almost always frail.
Chris's story
Chris's story
Chris was diagnosed with Crohn’s in 1983. Since then he has undergone surgery eight times and had numerous other stays in hospital.
Jennifer's story
Jennifer's story
It took 18 months of pain, sickness, bleeding, exhaustion and dramatic weight loss for 22 year-old Jennifer to be diagnosed with Crohn’s despite three visits to Accident and Emergency and even more visits to her GP.
Philip's story
Philip's story
Philip was a happy little soul from the moment he was born, and being diagnosed with Colitis at the age of 16 did nothing to change this.
Rob's story
Rob's story
There were two reasons why Rob’s experience of Crohn’s came as a shock to him.
Robyn's story
Robyn's story
Robyn was only 8 years old when she was diagnosed with Colitis, becoming the third generation in her family to have the condition.
Ruth's story
Ruth's story
As a working wife and mum of two, Ruth battled through periods of sickness and stomach pain for several years before being diagnosed with Crohn’s.
Sarah's story
Sarah's story
“I felt very alone,” Sarah says, remembering her first two years of illness. “No one understood what I was going through.”
Sonya's story
Sonya's story
Diagnosed with both Crohn’s and Colitis, Sonya’s experience has included multiple surgeries, more than 90 general anaesthetics, 37 blood transfusions, long periods of up to a year when her only food has come intravenously.

Wednesday, 17 April 2013

Guest Writer - Vicky


Positivity and IBD
What's that I hear you say? Positivity and IBD in the same sentence? As an IBD sufferer I know you may think I've lost the plot, I haven't - honestly!

Vicky
As mentioned in the Dealing With Your Feelings earlier Blog post, Inflammatory Bowel Disease (IBD), which includes Crohn’s Disease and Ulcerative Colitis (UC), is a very individual condition. This means that we don't all feel the same, even in remission there are those of us who do not go symptom free (unfortunately), but if you are newly diagnosed this can maybe seem like a never-ending cycle of illness. It's not.
Trust me, there is light at the end of the tunnel.
Obviously it can be a quite a shock to hear that you have a chronic (long term) illness, particularly when there is uncertainty within the medical profession even about how and why it develops in individuals. For some of us, finally having a diagnosis is a relief. For others, it can be more difficult to deal with, especially if there are periods of uncertainty regarding future treatment.

It can be a lengthy process from diagnosis to getting a treatment plan that works for you, but it is always worth the wait. When you get to that stage of remission, it is a wonderful feeling.

My first meeting with my IBD nurse taught me a valuable lesson. She said to me 'You have to control it, don't let it control you'. Obviously at times this is easier said than done, but once you are on a treatment plan it becomes easier, and things become possible that you didn't think were perhaps six months previously.

It's important, of course, even in remission not to overdo things. I've been guilty of this myself, getting carried away by the feeling of feeling 'well' and going out when I should have stayed at home resting. But it is possible to work or study, even if you only start off part-time and work up to full-time hours. Going out with friends, gentle exercise, all of these things can be achieved, with care. It's important not to try and rush yourself into remission just so that you can go to a gig, only to have a relapse. It's not worth it!

Through all this it's important to have friends around you. I have learnt the hard way that only real friends will understand when you say 'no', but don't feel guilty about using that word, as I often did. You may lose some people along the way, but I feel that they were not true friends to begin with. Those who truly know you will understand and try to help.

I also find it helps for me personally to write things down, I find writing my blog very therapeutic and I like to try and keep up to date on IBD research and events - anything to raise awareness. This helps me to keep positive that I'm doing some useful, and maybe helping to give something back to the IBD community.

Although it's obviously important to try and stay positive, we all get our 'down' days. I think during this time it's important to have friends and family around to talk to who understand your condition. These people are worth their weight in gold. After a period of remission you may find that flare-ups are more difficult to deal with, it's important to not lose sight of how far you had come previously.
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Vicky, 29, was diagnosed Ulcerative Colitis in 2011. She has a great blog - If You'd Only Make Up Your Mind and also did a video for us.