Life with Crohn's disease is very mixed – when it is bad it is very bad and when it is good life is perfectly normal, says Brian Smith. This is his story, as told to FIONA TYRELL.
I WAS diagnosed with Crohn’s disease during the summer that I turned 18. It was tough. So many things flashed through my mind. What is it? How long is it going to last? What will it do to me? And how bad will it get?
The thing with Crohn’s is that every person is different. When I was first diagnosed I wanted to find out how it would affect me, but the doctors couldn’t really answer that and I was told that it would take a while to find out what treatment was right for me. The internet can be scary. When I typed in ‘Crohn’s disease’ it threw up some scary stories.
The symptoms of Crohn’s disease include an extreme need to go to the toilet all the time, dramatic weight loss, abdominal cramps, lack of appetite and chronic fatigue. It also makes you irritable. It grinds you down and puts you on edge.
After the diagnosis, when I had done my Leaving Cert, I did a bit of part-time work and went to the US to visit friends. When I came back I was very sick and spent six weeks in hospital.
I was the sickest I ever have been with Crohn’s. It was still quite soon after I had been diagnosed and my family and I were not really prepared for the severity of it. I thought that all I’d have to do was take the medicine and it would sort itself out.
In hospital I was going to the toilet up to 20 times a day. This improved gradually and when I was going to the toilet about two to three times a day my consultant let me go home.
Because every patient with Crohn’s disease is different, I went through a lot of medication to try to find the one that was right for me. Some did nothing and others put me into remission for a while.
I started taking a biological drug just over a year ago called Humira. I have been in remission since then. I take it every two weeks in injection form.
Before that I had bouts of Crohn’s every six months or so, lasting for about two to three months. When my Crohn’s is bad it is very bad and when it is good I am perfectly normal.
When I had it bad I lost a lot of weight. At my worst my weight was at 45 kilos, down from 70 kilos. One person described me as a walking skeleton. I have put back all the weight and no, to look at me, you wouldn’t know that I have Crohn’s.
When I am sick with Crohn’s I need to know where every single toilet is. You become obsessed with planning your day and knowing exactly where the facilities are. If there are no toilets, you won’t go.
Before I got Crohn’s I used to enjoy hiking and mountain challenges, but they are pretty much off the cards now. It also makes you very tired so sports are also out. Really, it drains every last bit of energy out of you.
It took a while to accept that I couldn’t do what I used to be able to do. I had to hit bottom before I truly accepted that I had to live with Crohn’s and integrate it into my life as best I could. However, since I have gone into remission I haven’t stopped. My parents tell me to take it easy. But I don’t know how long it is going to last and I want to make up for lost time. Now I have to watch my weight. I put on 10 kilos in three months. I never had to watch what I ate before.
I am not shy about telling people that I have Crohn’s. I never say the word disease. I think it is a dirty word. It makes alarm bells go off in people’s heads. I tell them I have Crohn’s and there will be times when I won’t be able to do things and I’ll have to stay in the house.
It can be difficult when you are with a group of people you don’t know – trying to explain that when you have to go to the toilet it means you have to go now.
The hardest thing to accept is that there is no cause and that even though you may be doing everything right and taking your medication it can get worse for no apparent reason.
You could be out smoking and drinking all night and be perfectly fine. But it is important not to aggravate it for the sake of it. I’ve been there. I thought I was stronger than it and tried to beat it, but it doesn’t work that way. It just makes you sicker.
If you have had a health experience – good or bad – that you would like to talk about, contact: healthsupplement@irishtimes.com
CROHN'S DISEASE: THE SYMPTOMS AND WHO IS AFFECTED
Crohn’s disease is a serious, chronic, inflammatory disease of the gastrointestinal tract that affects 4,000-6,000 people in Ireland.
It belongs to a group of disease called inflammatory bowel disease (IBD).
There is no medical or surgical cure for Crohn’s disease and there are few treatment options for patients suffering with this chronic condition.
Crohn’s affects people of all ages but it is primarily a disease of adolescents and young adults, with onset typically between the ages of 15 and 40.
With Crohn’s disease the intestines become swollen, inflamed and ulcerated. Symptoms include persistent diarrhoea, abdominal pain, cramping, rectal bleeding, fever, weight loss, skin or eye irritations and delayed growth in children.
A new patient education programme entitled Life and IBD, developed by the European Federation of Crohn's and Ulcerative Colitis Association, has been launched. Log on to: www.crohnscolitis.ie/efcca.htmlfor further details. The Irish Society for Colitis and Crohn's Disease (ISCC) can be contacted on 01-8721416 or see www.iscc.ie