My name is Kim and I have been living with the Inflammatory Bowel Disease, Ulcerative Colitis for about 7 years. It started as a minor inflammation which was controlled by drugs for a few years until after a stressful period in my life when it got worse and become full blown Ulcerative Colitis. They say that stress isn’t a factor in IBD but for me that seems to be the trigger that starts it all off.
The impact was substantial. I suddenly had my life turned around due to a disease which no one knows how it starts, what causes it and there is no known cure. I suddenly had to make sure that I knew where a toilet was if I went out anywhere because I never knew when an attack would occur. At the start it wasn’t too bad, but the more stressed I got the worse the symptoms became. The worse the symptoms got, the more stressed I got and it became a vicious cycle. Even when I tried not to get stressed it didn’t seem to matter. I was tired and fatigued all the time and some days it took me all my time to get out of bed and go to work.
I went through days of feeling bloated then the diarrhoea would surface and it became a cycle which impacted all aspects of my life. I was tired all the time from the blood loss and my specialist who is fantastic, tried a variety of drugs to keep it under control. This included various doses of Prednisone, which in itself works well but the side effects aren’t great. The development of the classic “moonface” and weight gain from the drugs depressed me and even though everyone said not to worry, I still did.
Friends and family try to understand but unless you have lived with this disease you can’t explain what it is like to not feel well every day and to have your life changed completely from being reasonably healthy one minute to being unwell and overweight from the drugs you are taking. I am very lucky to have a supportive group of friends but even they sometimes don’t understand why you can’t go to a restaurant for dinner because certain foods make the condition worse or you aren’t feeling well. I can usually manage to find something on a menu but at its worst bland, plain food was the only food for me.
I am a teacher so there isn’t always the opportunity to go to the toilet when needed. At one stage I had to leave work at lunchtime because I had an accident that came with such severity and quickness that I didn’t make it to the toilet in time. This was extremely embarrassing and made me depressed at having to admit to such a childish thing. This was the start of a period when I didn’t know when I would suffer an attack and was taking each day one at a time. At this time the inflammation was gradually getting worse and my specialist was prescribing Prednisone regularly to keep the inflammation under control.
My condition got dramatically worse and I had to leave work and ended up spending 3 and ½ weeks in hospital where the final solution was a blood transfusion and an infusion of a newly available drug called Infliximab. It was either that or bowel surgery which was a definite possibly if the infusion of Infliximab didn’t work. Thankfully for me the infusion worked but it also meant a recuperation period at home with no stress and relaxation. That meant no work, missing out on a planned Pacific Island cruise with friends because I had only been out of hospital for a couple of months and was still being monitored closely.
I have had a couple of flareups since that time but they have been managed again by drugs. But even though I have been well there is always the thought in the back of your mind that if you let yourself get into a bad state again that the next time might be the time that the doctors say that the only solution is to have surgery. At the moment I am on a daily routine of drugs, one which is an immuno–suppressant which suppresses your immune system and makes you more susceptible to infection. So I have to be careful when the flu season hits as it takes me longer to get over any kind of infection.
Having an IBD has significantly changed my life as I have to consider every decision I make about holidays, working and lifestyle because whenever these things come up you have to make sure that you have all bases covered with regard to your health. I have only just got back to a reasonable number of days at work but this could always change if my condition doesn’t improve or it gets worse in the coming months. I need to make the right decision for myself and if I have a choice between working and having to have bowel surgery then I know I will give up work as my health is the most important thing to me.
I am thankful that I have a great specialist who looks out for me and makes sure that I am getting the best treatment possible. It is possible to live well with an IBD as long as you have a good attitude, a good specialist and a supportive network of family and friends.
The impact was substantial. I suddenly had my life turned around due to a disease which no one knows how it starts, what causes it and there is no known cure. I suddenly had to make sure that I knew where a toilet was if I went out anywhere because I never knew when an attack would occur. At the start it wasn’t too bad, but the more stressed I got the worse the symptoms became. The worse the symptoms got, the more stressed I got and it became a vicious cycle. Even when I tried not to get stressed it didn’t seem to matter. I was tired and fatigued all the time and some days it took me all my time to get out of bed and go to work.
I went through days of feeling bloated then the diarrhoea would surface and it became a cycle which impacted all aspects of my life. I was tired all the time from the blood loss and my specialist who is fantastic, tried a variety of drugs to keep it under control. This included various doses of Prednisone, which in itself works well but the side effects aren’t great. The development of the classic “moonface” and weight gain from the drugs depressed me and even though everyone said not to worry, I still did.
Friends and family try to understand but unless you have lived with this disease you can’t explain what it is like to not feel well every day and to have your life changed completely from being reasonably healthy one minute to being unwell and overweight from the drugs you are taking. I am very lucky to have a supportive group of friends but even they sometimes don’t understand why you can’t go to a restaurant for dinner because certain foods make the condition worse or you aren’t feeling well. I can usually manage to find something on a menu but at its worst bland, plain food was the only food for me.
I am a teacher so there isn’t always the opportunity to go to the toilet when needed. At one stage I had to leave work at lunchtime because I had an accident that came with such severity and quickness that I didn’t make it to the toilet in time. This was extremely embarrassing and made me depressed at having to admit to such a childish thing. This was the start of a period when I didn’t know when I would suffer an attack and was taking each day one at a time. At this time the inflammation was gradually getting worse and my specialist was prescribing Prednisone regularly to keep the inflammation under control.
My condition got dramatically worse and I had to leave work and ended up spending 3 and ½ weeks in hospital where the final solution was a blood transfusion and an infusion of a newly available drug called Infliximab. It was either that or bowel surgery which was a definite possibly if the infusion of Infliximab didn’t work. Thankfully for me the infusion worked but it also meant a recuperation period at home with no stress and relaxation. That meant no work, missing out on a planned Pacific Island cruise with friends because I had only been out of hospital for a couple of months and was still being monitored closely.
I have had a couple of flareups since that time but they have been managed again by drugs. But even though I have been well there is always the thought in the back of your mind that if you let yourself get into a bad state again that the next time might be the time that the doctors say that the only solution is to have surgery. At the moment I am on a daily routine of drugs, one which is an immuno–suppressant which suppresses your immune system and makes you more susceptible to infection. So I have to be careful when the flu season hits as it takes me longer to get over any kind of infection.
Having an IBD has significantly changed my life as I have to consider every decision I make about holidays, working and lifestyle because whenever these things come up you have to make sure that you have all bases covered with regard to your health. I have only just got back to a reasonable number of days at work but this could always change if my condition doesn’t improve or it gets worse in the coming months. I need to make the right decision for myself and if I have a choice between working and having to have bowel surgery then I know I will give up work as my health is the most important thing to me.
I am thankful that I have a great specialist who looks out for me and makes sure that I am getting the best treatment possible. It is possible to live well with an IBD as long as you have a good attitude, a good specialist and a supportive network of family and friends.
