By Jeff Jurmain
For 11 years, Chantel Wicks has lived daily with Crohn’s disease and ulcerative colitis that has never been in remission. Yet only when her condition is severe does she rank physical symptoms as her biggest challenge. On a day-to-day basis, Chantel says it’s the psychological impact that is hardest to bear.
“Mentally, it’s difficult to deal with the constant physical agony, and the uncertainty and fear that I may not get better,” says Chantel, 31, a middle school science teacher in Toronto, Ontario.
“Depression is a very real threat when you spend every day struggling in pain for extended periods of time – and you can’t see any light at the end of the tunnel.”
Shining a spotlight on mental health
Chronic diseases, such as Crohn’s and colitis, are known more for the physical symptoms they impose. But for children and adults living with these often debilitating conditions, mental health is a serious concern. Living in chronic pain – and experiencing symptoms that can be difficult to talk about – make many feel alone, embarrassed, anxious or depressed. Mood disorders are not uncommon in this community, and these people want help.
In fact, a recent Crohn’s and Colitis Canada survey of 3,500 people living with or affected by Crohn’s and colitis found that half of respondents identified mental health support and education as top priorities. In our upcoming report, The Impact of IBD in Canada,
psychological distress proved a common theme among patients, even during times of remission. The report stresses patients need coping mechanisms to reduce this problem, along with individual support.
“If people aren’t comfortable talking about their disease and bottle up their worries, thoughts and fears, than like any problem that’s kept inside, it only makes everything harder,” Chantel says.
A devastating impact on the youngest patients
The impact of this disease is felt no more strongly than by children and teens. Dr. Sara Ahola Kohut is a SickKids psychologist embedded in the hospital’s IBD program. She sees the psychological impact of Crohn’s or colitis each day as she strives to help young patients live a full life in spite of it.
“Being a teenager is so complicated,” Dr. Kohut says. “There is a lot of change, a lot of stress, and you’re trying to figure out who you are. A chronic disease makes things far more complicated, never mind when it’s one that affects bowel movements, a private affair. It swiftly becomes an invisible disease because young people won’t talk about it.”
Navigating school, trying to fit in, dating -- teens already have so much going on in their lives. Those with Crohn’s or colitis must also manage stomach pain, urgency, fatigue, medications that can stop working, and the persistent risk of a flare up.
“This is a relapsing, remitting disease that teens would love to forget about, but it is impossible to know precisely when a flare-up may strike,” Dr. Kohut says. “They are acutely aware of this uncertainty, which breeds anxiety.”
Crohn’s and Colitis Canada funded Dr. Kohut’s novel research project that addresses the mental health issues she sees in clinic. In a randomized control trial, she is studying whether her iPeer2Peer program – where young patients are supported by veteran ones in a series of Skype conversations -- generates positive outcomes on quality of life, symptoms like anxiety and depression, and disease self-management skills.
Her team trains adults aged 18-25 who are managing their Crohn’s or colitis well, who have volunteered to mentor younger patients. They are then matched individually to youngsters currently struggling with a challenge both can relate to: for example, if a teen has started to wear an ostomy bag, his or her mentor would be someone who can relate.
“There is something to be said for the wisdom of lived experiences,” Dr. Kohut says. “Being supported by someone a little older, who has been there, who gets it, can be quite motivating.”
She says this strategy is particularly beneficial for youngsters who, developmentally, tend to want to work through problems with their peers, rather than with parents or teachers. Mentors are selected so they are close enough in age that their advice is well-received over the course of up to 10 Skype calls. And, Dr. Kohut says, half the time is usually spent just talking about life as a teenager, which affords them a sense of normalcy.
“Teens are really good at giving themselves a hard time,” she says. “Having a peer mentor helps them know they aren’t alone in their battle with this disease, and that they are doing a good job. Mentors strip away the social isolation, and provide a kind of support that friends, family and healthcare workers simply can’t.”
The iPeer2Peer study is underway not only at SickKids but at IWK in Halifax, CHEO in Ottawa, and BC Children's Hospital in Vancouver. The study is entirely funded by Crohn’s and Colitis Canada and, if results are positive, has the chance to be quickly translated into clinical practice.
Chantel says such dialogue is key for people with a chronic disease. “Since I educated myself and started speaking openly about my disease to others, it has helped me accept that I have IBD but IBD does not have me,” she says. “This has been very positive for my mental and emotional wellbeing.”
Supporting the mental health of caregivers
As with most chronic illnesses, Crohn’s and colitis exerts a significant toll on a patient’s family and other caregivers.
Reports have shown parents of young patients have significantly lower psychological health compared to parents of other children, as well as significantly lower physical health status.
Chantel believes her fiancé, parents, and close friends have Crohn’s and colitis by association. “They love us and, therefore, when we suffer they suffer in their own way. It isn’t easy to see someone you care about struggling and you can’t do anything to help them,” she says.
Dr. Kohut recognizes this issue, which is why her next interactive mentor program currently in development is called iParent2Parent -- to equip families with the support they need as well.
We must reflect on how far-reaching a problem this is, and do our best to support people with chronic illness for whom depression and anxiety can be an uninvited visitor to life.
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