Living With Crohn’s Disease – Victoria And Sara Share Their Stories

Reality TV star Sam Faiers was diagnosed with Crohn’s Disease a few weeks ago, which generated much media coverage. This made the news as Sam is in the public eye, thanks to her role in TOWIE. However, not a lot is known about the condition that is Crohn’s disease. Sara Byrne contacted us in the hope that we could include some information, about the inflammatory bowel disease, in the article written about Sam’s diagnosis. In an effort to spread further awareness about Crohn’s, we asked Sara if she would like to tell us her story. She agreed and contacted her friend Victoria who also suffers from the disease. They shared their varying experiences below, while also highlighting the good work carried out by the Irish Society for Colitis and Crohn's Disease. Victoria Cleary When were you diagnosed and what did the process involve? I was officially diagnosed with Crohn’s Disease on 15th October 2001, at the age of seventeen. During the summer of 2001, I became very ill. I was down the country at a euro languages course learning French for my Leaving Cert the following year. At first, I had to sit out of the sports class as I had chronic fatigue (which was upsetting for me as I played netball for Ireland and loved my sport). I thought I was just getting unfit when I couldn't climb the staircase to bed (which is ridiculous looking back). Every time I ate a meal I would be crippled over with pain as if my stomach was going to explode. The pain was so severe that at times, I couldn't walk. I would drop to the ground and couldn't move sometimes for a half hour. My abdomen was distended and my joints ached. All I wanted to do was sleep and there was blood in my stools. I went to my local GP who said it was just a virus and it would pass. I remember a fellow student coming up to me saying she was worried about me, as I was presenting many of the symptoms she had before her appendix burst. I went home and told my parents that I had got a virus at the college but I was okay. The pain continued but I learnt to deal with it. I thought the blood in my stools would just go away and it's not something I was willing to discuss with friends or family. In August 2001, I had just eaten lunch and became light headed and ill when my body was trying to digest food. My sister noticed my distended abdomen and mentioned it to my mother. She took one look at me and brought me to our family GP the next day. I was then referred to a gastroenterologist. After an ultrasound, x-Ray, colonoscopy, biopsy, and barium follow through and a few visits to hospital I was kindly diagnosed over the phone via the consultants secretary, as the consultant was on holidays for three weeks. I was distraught, having never heard of the lifelong condition and I didn't know anyone living with it to ask advice about how they deal with it - I had millions of questions that a doctor couldn't and wouldn't be able to answer. What symptoms did you have and did it interfere much with your daily routine? I missed a lot of school with the chronic pain and fatigue. I found it impossible to concentrate in class as I was in so much pain or I might spend forty minutes out of forty five of my class in the toilet. I had blood in my stools still, diarrhea, distended abdomen, joint pains and chronic fatigue. It definitely affected my daily life. My life had changed forever. Instead of being the bubbly person I am, I became quiet as I didn't have the energy to mess with my friends. It was a frightening period in my life. Victoria with her daughter Jamie-Faith Can you describe Crohn's to someone who has never heard of it? It is a life alternating disease that affects each individual in completely different ways. It primarily causes abdominal pain, diarrhea (which may be bloody if inflammation is severe), vomiting, or weight loss, but may also cause complications outside the gastrointestinal tract such as anaemia, skin rashes, arthritis, inflammation of the eye, tiredness, and lack of concentration. It isn't the same as Irritable Bowel Syndrome (IBS). Crohn’s can be very debilitating at times and then there can be periods when it's not quite as bad. Would you agree with this or is it more that every person is different? I would totally agree with this statement - I have had Crohn's disease for thirteen years - the first three to four years were a challenge. I was trying to get my medication right, adapt my life style - look at my diet. Once I had my head and body back in the right place I was a stronger individual. How do you cope with it? Straight away I went on a gluten and dairy free diet for six months, even though my doctor at the time felt this wouldn't benefit me, I totally disagreed. I felt it allowed my body to heal. I am not very strict any more but I know my limits and when I need to be careful with my diet. I also decided against becoming a nurse as I felt that even though the work would be so rewarding, the long hours would not suit my body so I became a holistic therapist - I'm self-employed so I can work my own hours and if I'm not well I can alter my clients to fit around my schedule. I also get to help others with digestive problems via reflexology and life coaching. I also became a member and director of the ISCC which has been my main coping mechanism. The support they provide is priceless. Any advice for fellow sufferers? You’re not alone, don't feel isolated. Your life is not over it's just a new one beginning. If I could live my life with or without Crohn’s again I would pick with as it's made me the person I am today - I appreciate life more I take nothing for granted. When I'm healthy I live life to the full. When I'm weak I allow my body to rest instead of feeling guilty or ashamed.I have travelled the world, married my husband and just celebrated my daughter Jamie Faith's first birthday last week. I was on the EFFCA youth group board and have made friends with people all around Europe with IBD - we are not alone! Please please reach out to the ISCC and become a member for only €15 a year and get invited to events all around Ireland to meet other people with IBD, to learn from each other and to make lifelong friends. Sara Byrne When were you diagnosed and what did the process involve? I was diagnosed with Crohn's disease nearly 9 years ago, when I was 15 years old following a raft of tests as an in-patient in a Dublin hospital. I had several x-rays, a CT scan, barium follow through (which is another form of x-ray) and a colonoscopy until I finally got my diagnosis. What symptoms did you have and did they interfere with your daily routine? I have quite an aggressive form of Crohn's disease which predominantly affects my small intestine. My main symptoms have generally been severe stomach ache, cramping and vomiting. My weight has fluctuated massively, at my worst I went down to six and a half stone and I would have absolutely no appetite. I have also been affected to a lesser extent with diarrhea, fever and mouth ulcers. There have been times when the inflammation has been so bad that I have had to stop eating for long periods of time. When I was 17, I was put on a six week tube feed and just last year, I had to stay on a liquid only diet for 13 weeks. This involved drinking six prescribed nutritional supplements per day – for someone who loves food and going out for meals this was a slow form of torture! Having Crohn's disease has caused major interruptions to my life. I've had three different surgeries, the first one in 2007, during my leaving cert year, where they removed 30 cms of my small intestine. Then last year, I had a further 42 cms removed plus I was given a temporary stoma which then had to be surgically reversed eight weeks later. During this time, I had to take 21 weeks off work in total and defer my accountancy exams by a year. Victoria and Sara advocate the the Irish Society for Colitis and Crohn's Disease Can you describe Crohn's to someone who has never heard of it? Crohn's Disease is an inflammatory Bowel Disease ("IBD") along with Ulcerative Colitis. Basically, it occurs where the immune system attacks the digestive system causing inflammation anywhere along the digestive tract. Patients go through periods of remission and relapse and generally, are put on drugs known as immune suppressants or biologics to try to prolong the periods of remission. How do you cope with it? Firstly, I rely heavily on the support services provided by the Irish Society for Colitis and Crohn's Disease (ISCC), hearing others peoples' experiences with the condition takes the fear out of it for me. Secondly, I am prepared to make adjustments, such as deferring my exams, I try not to think of it as giving in, maybe just changing course temporarily. Finally, when I am in remission I make the most of it and enjoy those days, weeks, months or even better, years, when I don't have to be a patient! I am generally a very positive person and this has really helped me get through some of the tougher times with this condition. Any advice for fellow sufferers? For anyone who is newly diagnosed, outpatient appointments can be daunting and you probably have a million questions running through your mind. Write these down, along with any symptoms you are experiencing so you and your medical team can make the most of your appointments. Most importantly, it is manageable. There are a lot of excellent treatments out there and with the support of your friends and family, your medical team and the services such as the ISCC, it is possible to lead a normal life! The ISCC is hosting a meet-up over tea, coffee and food in Cafe En Seine, Dawson Street, Dublin 2, on Saturday 29th March for patients under 30 suffering with Crohn's Disease and Ulcerative Colitis. For more information visit www.iscc.ie or find us on Facebook