Crohn's disease and ulcerative colitis affect an estimated 15,000 people in Ireland.
Both conditions come under the heading of inflammatory bowel disease (IBD) in which the digestive system is impaired and the gut becomes inflamed and swollen.
Crohn's and colitis are usually diagnosed between the ages of 15 and 40, but can occur at any age, even in toddlers. The two conditions have similar symptoms, including abdominal pain, severe diarrhoea, fever, loss of appetite and weight loss.
The condition is usually controlled with medication.
Symptoms may, however, 'flare up', from time to time. In some cases, when parts of the colon may become too inflamed, patients may need surgery.
What's it like to live with the condition? Those who have Crohn's and colitis say despite it being a serious condition, by taking a practical approach, availing of the correct advice and accessing peer support, it is possible to live a relatively normal life.
42-year old Dubliner Ciaran Davis was diagnosed with Crohn's disease when he was 19. He is Secretary of the support group, the Irish Society for Colitis and Crohn's Disease.
"The first symptoms were diarrhoea, vomiting and feeling extremely tired all the time. I lost a lot of weight and had frequent high temperatures. The problem at the beginning is that it can take time to get a definite diagnosis and you go through one test after another. In the absence of a diagnosis there can be no treatment, so they simply isolated and treated each symptom individually. When they arrived at the correct diagnosis it was as if the doctors forgot about the symptoms and just wanted to focus on the disease. That's fine if they can get you into remission quickly but not so fine if the disease persists stubbornly and so too do the symptoms."
"It is necessary of course to treat the disease, but this is not a completely holistic approach. Apart from the obvious symptoms, if the disease is proving difficult to get under control, patients often start to have other issues such as depression, but few doctors address this effectively."
"My first treatment for Crohn's was steroids which successfully induced remission and I enjoyed perfect health for five years. I packed a lot into those five years and just when I thought I might not have this disease at all I had a mild flare-up. Despite this, I had no real problems until my late thirties. I had a flare but could not get into remission without steroids, as a result of which I gained quite a bit of weight. I was lethargic all the time and it turned out that I was anaemic. However, the doctors didn't tell me this, I had to find out for myself. I don't blame them, but it's just another example of how sometimes debilitating symptoms can be left untreated"
"My quality of life wasn't great during this time and I wasn't exactly putting in a stellar performance at work. My boss was amazing however, and I was shown nothing but kindness at work. Even though I didn't offer any real reason, because I had told them I have Crohn's, I think they just knew that perhaps I needed a little understanding. I am now treated with one of the newer biologic drugs, infliximab, which has mostly kept me in remission. And now if I feel fatigued, I know to take iron supplements because it is usually related to iron deficiency."
On diet, Ciaran says when a person with Crohn's is well their digestive system should function like anyone else's. "However, when you flare up, your digestive system stops working properly and you are normally advised to go on a low fibre, low fat diet with an emphasis on fairly bland food, chewing your food properly, and eating smaller portions at a time."
Ciaran feels that doctors treating Crohn's and colitis may have so much of their time taken up with the more challenging cases that some people are left behind and carry on with symptoms because they can 'just about get by'. He does not think that this should be the case and that all patients should work through every issue with their doctor. "People with Crohn's and colitis can be affected by symptoms for an extended period, and their personal friendships, relationships and work situation can be affected. Doctors are not always good at dealing with and advising on that."
"What is needed is a more holistic approach. Patients often need other resources such as psychological support, and information on exercise and diet. Peer support can be a huge benefit because this is a very isolating disease. Arising from my involvement with the ISCC I was recruited by Beaumont Hospital for training as a leader on Stanford University's Chronic Disease Self-Management Programme. The hospital is offering this as part of a wider support programme called Living Optimally with Inflammatory Bowel Disease. I just finished delivering my first programme and can honestly say I think this is the best thing that has ever happened for Crohn's and colitis patients in Ireland."
"The feedback from participants was amazing with people saying how much more confident they were about managing their disease, and how comforting the camaraderie in the room felt. Through a combination of discussion, active problem solving, brainstorming, action planning, goal setting and education, participants are encouraged to take an active role in the management of their IBD."
"Time is spent on communication skills, exercise methods, nutrition, medication adherence and decision-making in medical care. Not only do many people get to meet others with IBD for the first time, they also get to spend a lot of time with them over six weekly sessions, form close bonds and friendships that they are encouraged to strengthen through participation in a support group once the programme has finished." Ciaran believes that rolling out this programme nationwide would save the health service millions.
Ciaran also believes there is a need to expand the number of inflammatory bowel disease specialist nurses. "I'm not saying anything new here - everyone is saying this. Some of the larger hospitals have these nurses but there are gaps. The IBD nurse specialists can act as an important bridge between the patient and the consultant. If people feel a flare coming on they can contact the nurse specialist. Only the more serious cases will require inpatient care care. In terms of health economics, the savings the service could make by having more of these nurses would I'm sure be phenomenal."
"When I talk to people who are diagnosed for the first time, I have to tell them that unfortunately, it is a condition they will have for the rest of their lives. I do not say this to scare them, more to be realistic and encourage them to knuckle down and learn about their disease and how to manage it. People can live their lives to the full and navigate around any limitations that come along. Strangely, I don't regret having Crohn's because it has taught me to enjoy life to the full."
"People with the condition can educate themselves and take an active role in managing the disease. But we need more resources like IBD nurse specialists and I would dearly love to see every hospital follow Beaumont's lead and offer the Chronic Disease Self-Management Programme. If I had three wishes, this would be numbers two and three. The top one would be to do more for children with IBD. But that's a whole other story..."
Ciara Drohan is a 33-year-old mother of two from Dublin.
She was diagnosed with Crohn's Disease when she was 18, after experiencing symptoms including weight loss, tiredness, bloating and diarrhoea for around three years.
"I lost a dramatic amount of weight in my teens. At that age this can be put down to stress etc but I had an inkling that something more might be wrong as Crohn's disease was in my family."
"I was diagnosed with perianal Crohn's, which means the condition affects your back passage. In addition to the above symptoms this means you also get abscesses and fistulas, which are essentially holes, and I get these regularly."
"After the diagnosis, I went through regular check-ups and exploratory procedures in hospital. When I was 26, I had a bowel resection, which was felt to be necessary to improve my quality of life. This was designed to treat blockages and narrowing in the bowel and to improve my quality of life. The resection involved removing 30 centimetres of bowel."
Ciara has learned to adapt her life to her condition and says she now enjoys a good work-life balance within certain limitations.
As with most Crohn's sufferers, her condition can be dormant and then flare up with symptoms such as diarrhoea, cramps, extreme tiredness and infections from time to time.
Ciara must take a number of medications for her Crohn's. She injects the anti-TNF drug Humira, and takes an immunosuppressant drug, to boost her low immune system and prevent infections, and codeine.
She must also take tablets to control her stomach acid and to help her digestion, which was affected by the bowel resection.
"For the past few years too I have a seton (a wire under the skin) put in place to drain any infection from fistulas in my back passage. When I became pregnant, my consultant recommended a C-section as a normal birth might have been risky with my condition."
"Crohn's," says Ciara, "is a difficult condition but it is liveable with if you make some adjustments to your life. It does take a long time to adjust your life as best as possible to the realities of your condition. You need to slow down and listen to your body. For example, some nights you might need to decide you just can't go out, other nights you might be OK to go out. If you are making a fairly long journey you might need to plan it carefully so that you can stop at easy-to- access toilets. People with Crohn's and colitis can get special medical alert cards so that they can, for example, show them to get quicker access to toilets. Basically, it's a fact of life for us that you always have to know where the toilets are."
Ciara works full time as a human resources manager. "It is possible to have a good and efficient working life with the disease, but you need to be open with your employers about it. For example, so that they understand you might need to leave a meeting quickly to go to the toilet or that you may need to be absent from time to time when you need to go to hospital."
"Some employers might not understand the needs of people with Crohn's and colitis. The problem, with it is there are no visible signs of the disease. You might look fine but you might be having a flare-up."
"I got involved with the ISCC after being part of their Youth Manifesto. I am a founding member of the ISCC Youth Group and I am a director of the ISCC. People like to meet other patients and this is a major form of support, to know you are not alone with the disease. The ISCC has done a lot of work in trying to break down barriers and increase support for those with the condition."
"It can be a burden and it can be difficult. But I always think to myself there is always someone worse off than me out there."
In relation to diet, Ciara says there is no diet that fits all. "However, for someone newly diagnosed it is a good idea to keep a food diary so you can see what affects you the most and similarly when going through a flare up."
"For me I change my diet if I am going through a flare up to light food and easily digestible food. I do not absorb some vegetables and fruit very well so I tend to stay away from them, I have learnt what suits my disease and what does not. Sometimes, which is only human, I go for what I fancy and this can sometimes back fire on me but that is unfortunately part of life with Crohn's. I find if I eat little and often it works for me."
Visit irishhealth.com's Crohn's Disease and Colitis Clinic.
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