Beyond IBD: transcending chronic illness

Journaling by Rebecca

Two decades of scientific research has demonstrated the physical and psychological benefits of writing about our troubles.

Patients with serious chronic illnesses such as asthma, rheumatoid arthritis, cystic fibrosis, cancer and HIV, when asked to write about their most stressful and emotional experiences, reported the following benefits:

• improved immune function;
• reduced blood pressure;
• improved lung and liver function;
• reduced pain;
• fewer days in hospital; and
• improved mood. (see note 1)

The idea of delving into your emotions, and exposing them on paper, may make you feel uncomfortable or vulnerable. Although a journal exploring your thoughts and feelings will give the greatest benefits, there are other types of diaries which can help you manage your Crohn’s or colitis.

Food and symptom diary

A common recommendation for those with inflammatory bowel disease (and many other illnesses) is to keep a food and symptom diary. As every IBD patient knows, and the Crohn’s and Colitis Foundation of America (CCFA) confirms, there is no specific eating plan which works for everyone. Keeping a detailed food and symptom diary helps you identify the foods that bother you, and is an important source of information for your doctor and nutritionist.

Maintaining a minute record may become tedious over time, but even if you keep the diary for only a few weeks you will become more aware of what you eat and may uncover patterns in your symptoms. Example food diary.

Wellness chart

A wellness chart is an easy way to track your disease and general well-being over extended periods of time.

A variety of indices, such as the Crohn’s Disease Activity Index (CDAI), are used to measure disease severity. These primarily record objective data such as blood analysis and weight; however, there is increasing interest in measuring the impact of IBD on the patient’s quality of life.

You can devise your own chart and rating system, customised for your common symptoms and triggers, which will only take a few minutes each day to complete.

Once again this will be a useful source of information for your doctor, and will help you take a more active role in your health management. Perhaps more importantly, it will encourage a broader, more realistic perspective of your health. We all have good and bad days - on the worst days it can be difficult to see the light at the end of the tunnel. Your wellness chart will remind you that you’ve had better days and most likely will again. Example wellness chart.

Medical timeline

From your first diagnosis, keep a simple timeline of your treatment. At minimum include medications (with dosage), tests and results, and major events in your disease. If you can, also include names of doctors consulted and notes of your discussions.

Initially you will be able to recount all these details from memory, but as the years pass you will be surprised how quickly one test blends in with another, and you might forget the name of that particular medication you took for a month and then stopped because you had a bad reaction.

This information is particularly useful when you change doctors, or if you have to see a new doctor in an emergency situation. It will also be very helpful if you wish to assist with IBD research - I was disappointed that I could not remember more details concerning my initial diagnosis for a recent research survey.

Journaling or the one-sentence diary

Give yourself 15-20 minutes a day to write about how you are feeling and what has been happening in your life. Wake up 15 minutes early to make the time, or write just before bed. Grammar and spelling are not important; you don’t have to use sentences, or even words (you might draw a picture). If even this seems overwhelming start with a one-sentence diary.

Whatever form your diary or record-keeping takes, the key is to keep doing it! Set an achievable goal and don’t berate yourself if you miss a day - just be sure to do it the next. As you continue you will find it easier and once you have built a string of entries you will begin to see and feel the benefits.

Rebecca Leigh

References
1. Baikie & Wilhelm, “Emotional and physical health benefits of expressive writing”, Advances in Psychiatric Treatment vol. 11 (2005): 338-339

• Quicklinks
• Crohn’s disease - overview and latest treatments
• 7 reasons not to join a support group (Part 2)
• Learning sickness and sharing stories
• 7 steps to improving day-to-day comfort