‘Will I ever be normal?’ is a question that a 26 year old shouldn’t have to ask, but it is a sad reality for many young people diagnosed with acute severe ulcerative colitis, a chronic and debilitating inflammatory bowel disease that often strikes the young (people aged 20-29). Approximately 2,540 new cases of the disease are diagnosed every year.
Hayley, 26, was diagnosed in 2010. She shares her story with us, her positive response to treatment and her plans to start a family.
For those who aren’t familiar with ulcerative colitis, what is it and what did the diagnosis mean for you?
Ulcerative colitis is a form of inflammatory bowel disease (IBD) that affects the colon (the largest portion of the large intestine). Some characteristics of the disease include ulcers, or open sores. Symptoms may include diarrhoea, bloody stools, abdominal pain, chronic fatigue, fever and weight loss. Ulcerative colitis is an intermittent disease, which means that there are periods when the symptoms are exacerbated symptoms and other periods that are relatively symptom-free. Ulcerative colitis needs to be treated with medication or surgery for it to go into remission.
The diagnosis means I have a disease for the rest of my life unless I have surgery to remove my colon. I will have to be on medication for the rest of my life. It is a disease I had never heard of and had to do a lot of research to understand it and how it will impact me. When I was first diagnosed, I thought my life would have to change to manage the symptoms and to cope with the disease.
When did you first notice something was wrong? What symptoms did you experience?
I first noticed something was wrong when I bled going to the toilet. I have a mixture of mild and severe flares. Milder symptoms means I have urgency to go to the loo, will pass blood, will need t go to the toilet a few times a day, minor pain, diarrheal, fatigue.
Severe flares of symptoms resulted in admission to hospital. The symptoms I experience include extreme urgency, blood, going to the toilet day and night, significant pain, diarrheal, very rapid weight (when it’s hard for me lose weight), fatigue, weakness.
You were preparing for your wedding at the time of your diagnosis, how did it affect your husband and your plans for the future?
My husband had to step in more to help with preparing for the wedding and enlist other people to help us as well. I felt I lost control of planning my own wedding because of being in hospital for two weeks and then needing to take time to recover. My husband underneath I think was stressed because he wanted me to be all better and he couldn’t help. It has affected our plans for the future in some ways, we may not be able to travel to certain countries because I catch illness easily now with the medication I am on and medical care in some countries may not be able to help me if I need it. It means that before starting a family I want to make sure my health and medication is stable.
What treatment did you undergo for your condition?
I was on steroid therapy to help reduce the symptoms when I was experiencing a really bad flare. Steroids didn’t work well. I went to hospital and had hydro cortisone injections for a few days, which helped to improve things but not greatly. I was still in pain, so I was transferred to another hospital and received infliximab, an emergency rescue treatment.
How has ulcerative colitis affected your quality of life?
It has affected my quality of life because I need to know where the nearest toilet is in case I urgently need to go to the loo. I’m a lot more concerned about my health and well being and I have to remember to take different medications at different times of the day.
People living with ulcerative colitis don’t always ‘look’ sick and many have difficulty explaining flare ups to employers and friends when the symptoms are at its worst. How did you cope with that?
When I was first diagnosed I didn’t tell a lot of people, except close family and friends. I work for two libraries (Adelaide Theological Library and TAFESA). I felt I didn’t want to tell my employers because I didn’t want them to see me as weak and have them fear it would interfere with my work. Ulcerative colitis is not a nice disease to tell everybody you have, because it’s embarrassing. My really close friends understood what I was going through because they had someone close to them experience a similar condition. It is hard for me to explain myself to people and for them to understand when you can’t see what going on inside.
What would your message/advice for others be? What do you hope to achieve my sharing your story with others?
If you don’t understand something then find out more about it to understand better. Join help and support groups and discuss the issue openly with family and friends so they can understand when you are having a down moment. I hope by sharing my story to let other people with ulcerative colitis know that they are not alone in this world, someone will listen to you. You can get through difficult times with a medical illness and the rest of life with help and support from loved ones.