Being able to talk with people who understand the challenges of living with IBD is a huge benefit, says Ostomy Support Group (Box Hill) Facilitator Karen Budden.
I was diagnosed with Crohn’s disease 30 years ago. Although there have been lots of good times, I have also experienced many surgeries, medications and difficult times. Unfortunately bowel disease and its symptoms are not easy things to cope with, or to talk about. Being able to discuss and share our problems has helped us to deal with them, and I wanted to offer the same assistance to others who may be struggling alone.
Getting to the end of a meeting and knowing that you have really helped someone is always a huge highlight. One of my very best experiences was a night when only three people attended. One was a new member who had been very unwell and was having a very difficult time, not only with the disease but with depression and frustration. We had a great chat, and all went home feeling very positive. A few days later she sent me an email telling me how much she had enjoyed attending, and that it had helped her immensely. To know that we had assisted her to such an extent made me very happy and proud, and reinforced my commitment to helping others, even in this small way.
Being able to get together face to face and chat is a huge benefit. To know that you are not alone in your struggle, to have reassurance, advice and encouragement is invaluable.I am still often surprised at the amount of time it takes for some patients to be diagnosed! Sadly they often present with all the common symptoms, only to be told they could be coeliac, to try a gluten free diet, or that they may have irritable bowel syndrome
When I was diagnosed 30 years ago there was very little information available (and this was before we had the internet). I remember being told I had Crohn’s disease and that there was no cure. I was given medication, a brochure… and that was about all. Although we have access to a lot more information now, hearing about other people’s experiences (both good and bad) can be so much more beneficial, especially to those who have recently been diagnosed.
To attend a support group meeting and see others who have the disease, yet have lived full and active lives, had children, travelled and still achieved everything they wanted to in life is inspiring!
This is an edited excerpt from a longer article in the Austumn 2014 edition of Inside Insight, available in the Members Onlysection.