Who Gets IBD?
Both sexes are affected equally, but IBD mostly affects people between the ages of 15 and 30 years. IBD in children and adolescents often produces retardation of growth or delayed puberty, producing significant social problems.
Below are some personal accounts from people with IBD. Names and details have been altered to protect the authors.
Personal Stories
Peter
I was diagnosed with Crohn’s disease 14 years ago at the age of 20. I was at university and had to defer that year. I was placed on medication to suppress my symptoms. Over the years I have had many ups and downs, but I have never really been 100% in control. I am often very tired and need a lot of sleep.
Crohn’s disease has caused me to dramatically adjust the way I live my life. There are some periods where I cannot leave the house or if I do I am constantly thinking about where the nearest toilet is and will I make it. I have also had do adjust my career goals to being self employed and working from home as I cannot predict when I need to go to the toilet which may cause embarrassment if dealing with people directly.
About 5 years ago I had surgery to remove part of my bowel that were damaged due to ulcers. I have had many colonoscopies to keep track of the disease. I have had negative reactions to many of the medications restricting my treatment methods and there is also concern about the long-term effects of the medications. I have had some long periods of remission, which have enabled me to get back to normality.
I have been very lucky to have a supportive wife, physically and mentally. There have been periods where she has had to do everything around the house and she works full time. This has been a great help to me as there have been times when I have felt of no use at all. There is also the fear of the unknown as there is no cure and sometimes the medications don’t work as well as last time I used them, so the support of someone else is very important.
I have tried to make the best of my situation and sometimes when I’m well it has had little effect on me, but there is always the fear of its reoccurrence and its severity as it is often different each time. There is always the hope that a cure will be found or a safe treatment will inhibit the disease totally.
Julie
I’m 27-year-old female registered nurse, studying part-time, as well as being the full time mother of a four-year-old, I suffer from ulcerative colitis, which was diagnosed two years ago. Around the time I was diagnosed my quality of life was very poor, in that I couldn’t physically work, and had difficulty caring for my son, as I was so unwell. I was spending my days on the toilet and trying to sleep in between. I lost a significant amount of weight, had severe loss of appetite, and had constant pain. My mental state was also impaired due to my low quality of life. I was commenced on several medications, to which I was intolerant. After about six months I was eventually commenced on Salofalk and prednisolone, which seemed to be working.
It was amazing how well I became so quickly. I felt wonderful, however this did not remain, I have had several relapses since then and have and never really had my colitis under control. This was a very stressful time for me trying to cope with life’s everyday stressors while being so unwell. My relationships broke down causing further stress. I had a hospital admission last year, and have just recently had another. I have only now started to come to terms with my condition and how to manage this effectively, through significant life changes such as learning to be in control of my diet, exercise and general well being. It is amazing to see how this condition has impaired so many areas of my life, although now am trying to move forward in maintaining and controlling my condition to maintain a better quality of life for me.