“When suffering knocks at your door and you say there is no seat for him, he tells you not to worry…he has brought his own chair.”
Chinua Achebe
Some facts about IBD
One person in 210 in the UK has Crohn’s Disease or Ulcerative Colitis: conditions known collectively as IBD. A quarter of those diagnosed are children or adolescents. Symptoms can include:
- pain in the stomach area
- diarrhoea - sometimes mixed with blood/mucus
- loss of appetite, weight loss, slowed growth in height (particularly with Crohn’s)
- nausea
- tiredness/fatigue
- generally feeling unwell – possibly raised temperature/fever
- anaemia
- external abscesses
- fistulas: narrowing of passageways between the gut and other organs
Despite a great deal of research, the causes of IBD remain uncertain. Many researchers believe someone is predisposed to IBD because of their genetic make-up. Specifically, if their immune system is prone to reacting abnormally to certain food matter in the gut. Other factors could include viruses, bacteria, diet, stress and other triggers present in certain environments. The body’s reaction to any or all of these factors is inflammation and both IBD conditions can cause areas of the digestive system to become irritated and - over time perhaps - injured and inflamed at a deeper tissue level.
IBD is described as a chronic condition. This means that it will be ongoing and life-long although the person may experience long periods of good health (remission) as well as times when their symptoms are more problematic (relapses or flare-ups). Treatment can mean being put on an exclusively liquid diet for a period of around 6-8 weeks to allow the gut lining to recover. For some children, drinking the required amount of liquid can be challenging and a nasogastric feeding tube might need to be put in place. Going forward, the person might be prescribed immunosuppressant medication to help damp down the immune system and stop it creating irritation in the gut lining. And/or steroids to reduce the swelling and pain that can occur with inflammation. People’s experiences of managing IBD vary widely and in addition to the treatments above, certain food groups that tend to cause flare-ups might need to be limited or removed from their diet.
The psychological impact
Receiving a diagnosis that is likely to both alter and last the rest of a person’s life can be extremely challenging. In addition to the physical impacts touched on above, there might be intense feelings of loss, sadness, fear, embarrassment, social anxiety and isolation. Frequently, the psychological response to these strong emotions is to try and ignore or avoid thinking about them. This method of internal control can feel protective in the short-term but actually creates increased suffering in the long run. Have you ever tried not thinking about something? Generally, it tends to make you think about “it” more.
Acceptance and Commitment Therapy (ACT) is a therapeutic technique that encourages clients, with something like a life-altering diagnosis, to make contact with their negative experience, without excessive efforts to alter it. The Latin translation of acceptance is “to take what is offered.” Client and therapist work towards developing the skill of “willingness”: the ability to be open to one’s whole life experience. This means intentionally choosing to continue moving towards one’s valued life direction, despite – or as well as – life’s difficulties. Practising ‘willingness’ can be a key element of mindfulness or contact with the present moment. The therapist supports the client in becoming more present, as a conscious human being, in an open and non-judgemental fashion. Trying to live a human life by avoiding pain, as Sartre put it, is to live in ‘bad faith’. Often, just acknowledging the way things really are - or doing what matters most - can be painful. Even simple acts of caring can create a sense of vulnerability and the realisation that we can all be – and often are – hurt. Acceptance and a willingness to still be our best self despite life’s setbacks gives us an opportunity to find our inner resources and, ultimately, greater compassion for ourselves, others and the world we live in.
Nicole George – Psychological therapist
References
Luoma, J.B., Hayes, S. C. & Walser, R. D. (2007). Learning ACT: An Acceptance and Commitment Therapy Skills-Training Manual for Therapists. Oakland, C.A: New Harbinger Publications Inc.
www.crohnsandcolitis.org.uk: “IBD in Children: A Parent’s Guide” and “Understanding IBD – Ulcerative Colitis and Crohn’s Disease”