Approximately 146,000 people in the UK are dealing with a hidden condition that causes their daily life to be more difficult, dictated by access to bathrooms.
The symptoms can very from person to person, but generally include diarrhoea, cramp, fatigue and anaemia in more extreme cases, but this doesn’t mean it is always obvious when someone is suffering from the condition.
Kathryn Fairfield, 36, and her daughter
Some colitis patients require surgery to remove their bowel and will need to have a stoma - an artificial opening made to bring part of the intestinal tract out through the abdominal wall - to bypass the problem areas when passing stools.
Others might not need surgery, and can even go into periods of remission where symptoms of the disease disappear before ‘flaring up’ again at a later date.
You have to take lots of drugs (even when in remission).
“Even when I am in remission, like I am now, I take between 12 and 18 tablets a day and have to have blood taken at least every three months,” explains Kathryn Fairfield, 36, a police officer from Fife, Scotland.
“These tablets have various side effects including hair loss, sensitivity to UV and a compromised immune system.
“But to people who don’t know me I look fit and healthy, work full time as a police officer and run about after four kids and two dogs! It truly is a hidden disease.”
Clare Mee, 51
The reason you need to visit the bathroom frequently may not be diarrhoea.
Clare Mee, 51, from Nottingham, who named her stoma bag Thomas, says: “I think the thing that is surprising is that you can have quite severe constipation rather than diarrhoea.
“This is because maybe the left side of your large bowel is very inflamed and the stool can’t pass through the inflammation, and if it does, it is extremely painful to the point of making you faint with the pain.
“Most people assume it would always cause diarrhoea, but because the stool is stuck, you get fluid, mucus and blood and still have the urge to get to the toilet quickly if only to pass the fluid blood and mucus, which you can still have accidents with.”
Mareta Greig, 30
New relationships may cause you anxiety.
Mareta Greig, 30, from Glasgow, has had an ileostomy surgery (operation to remove the large colon and redirect the small colon to an external stoma bag).
She recently broke up with her boyfriend and worries about starting another relationship with a new man, something which she was always confident about before her surgery.
Your weight may fluctuate.
Mareta says: “My biggest problem was having to go on and off steroids where my weight would fluctuate to two stone more than my ‘normal’ weight when I had a flare up,” she said.
“A flare up consisted of me spending four hours at a time in the bathroom, even through the night, taking a blanket and hot water bottle with me because I physically couldn’t go to bed as the pain was so acute.”
Angela Rolle, 53
You could have to make huge changes to what you eat.
Angela Rolle, 53, from Croydon, says: “Having ulcerative colitis can affect your digestion. Most of the foods I used to eat pre-colitis are out of bounds now. I can’t eat dairy, wheat, gluten or processed foods.
“No tinned foods, no microwave dinners, no takeaways, going out for breakfast, tea or dinner. What I use to take for granted before – I can’t eat now.”
Your social life might take a hit.
“The restrictions on my diet mean that I’m limited,” says Angela.
“I’ve ‘lost’ friends, as they don’t understand, or can’t be bothered with my limitations. However, I’ve become creative. I’m a great cook, so I cook at home.
“I meet up with my lovely, understanding, stand-by-me forever friends for trips to museums, art galleries, concerts and all the great things to do when you live in London that don’t involve food.”
You may have to repeatedly explain your stoma bag to strangers.
Georgie Lack was diagnosed at 13 years-old, and recently raised over £1,500 for the Crohns in Childhood Research Association in the Windsor half marathon.
Georgie says one of the biggest problems has been explaining her condition to other people, but having to do this has made her much stronger.
She says: “The lessons I learnt - from trying to explain the stoma bag to airport security, to having to wait an agonising three months before playing sport again, were invaluable in making me a stronger person.”
You will get really tired.
Georgie says: “You might not realise it at the time, but your body is fighting everything and struggling to keep your digestive system running, which really takes it out of you, and you often won’t have as much energy as other people.
“An expression my parents love to use is ‘don’t burn the candle at both ends’, but when you are living with ulcerative colitis, you do want to go out and have fun with your friends - there’s no point being stuck inside - even if the day after a night out does zap you of energy, and not just from the normal hangover!”