Tips for IBD patients

Someone newly diagnosed with IBD asked me for tips on dealing with it today. Here was my response. These are things I did that helped me to cope and to heal from Crohn’s colitis. I have been in remission for over 5 years. These suggestions may not help everyone with IBD.

1-Practice mindfulness. It can help you to relax your nervous system and to develop more self-awareness. It can also help you to cope with difficult emotions. You could try at least 20 minutes of deep relaxation and meditation every day; it made a difference for me. Our nervous systems can easily become imbalanced through stress, which may worsen IBD. Stress doesn’t cause IBD, but it can exacerbate it. See: Psychological Stress in IBD: New Insights into Pathogenic and Therapeutic Implications, The Impact of Autonomic Nervous System Dysfunction on IBD and Effects of Mind-Body Therapy on Quality of Life and Neuroendocrine and Cellular Immune Functions in Patients with Ulcerative Colitis. Know your stress triggers. Managing my stress meant making lifestyle changes to reduce stresses in my life. Stressful jobs always exacerbated my symptoms. In the past five years or so, I have effectively managed my stress and doing so has also helped me feel overall improved well-being. Another blogger, Bob, healed from Crohn’s colitis and credits meditation as being key in his healing process. Bob’s blog: I healed my Crohn’s colitis. Mindfulness meditation and relaxation are not quick fixes and they may not help everyone with IBD to reduce the suffering that goes with living with IBD.

2-Know your body as well as you can and track your symptoms daily, as well as the foods you eat. Study your poo and write down the numbers and kinds of bowel movements you have each day (this will also be helpful in talking to your doc). Once you feel a little better, you could ask your doc about trying an elimination diet, so you can discover which foods irritate your gut the most. Your doc will likely say something like, “There is no good research on any particular diet helping IBD patients more than another.” True. (Though some docs suggest eating bland foods during flares.) You can still explore (under your doctor’s care) which foods make things worse in your unique body. I have a list of 20 foods — specifically for me — we are all different and have different sensitivities. The foods on my list were mostly ones I ate huge amounts of when I was most sick. The specific carbohydrate diet didn’t help me, but it has helped others with IBD (friends of mine). I ate baby food veggies when I was finally able to eat veggies during severe flares (sometimes I couldn’t even eat the baby food veggies as I was NPO). Juicing was a great idea at first, but I developed sensitivities to carrots and beets after juicing too much. Hopefully you already know that alcohol, caffeine, and nicotine are out. They can exacerbate your symptoms and adversely affect your autonomic nervous system.

3- Become an exceptional patient. Exceptional patients are sometimes a pain in the ass for the doctor, we ask a lot of questions, make informed decisions, and stay very active as self-healers. Dr. Bernie Siegel wrote about the exceptional patient in his book, “Love, Medicine, and Miracles.” See love medicine and exceptional patient. Whenever I made a major health decision, I read a lot of information on the internet, talked with friends who had IBD and read books on IBD. I considered my options carefully, though ultimately, the decisions I made resonated with my gut. If you want to understand more about intuition, please check out this page on intuition and instinct on the Embodiworks website.

4- Read about research on probiotics for inflammatory bowel disease. You could start with What is the evidence for the use of probiotics in the treatment of IBD?. I have taken VSL#3 probiotics daily for over 3 years and it has likely helped me to stay in remission. It is expensive, but some insurance companies in the US cover it. Read about research on VSL#3 here also Study shows ulcerative colitis patients achieve remission with probiotic composition VSL#3 and VSL#3 research. There is currently more evidence for VSL#3 being helpful to UC patients and patients with pouches than to Crohn’s patients. So probiotics are not necessarily helpful for everyone with IBD.

5- Develop a positive meaning of the illness, one that can help you on your worst days. For example, try and see how the illness can also help you feel grateful for even the simplest things in life. Give it a new name. My sister gave mine the name “Kitten Snickers.” You take your power back when you give it a distinct name that is apart from the medical world of diseases. Disown any illness identity that you may have. You are much more than your IBD. It does not control you or your identity. The way you relate to your illness is very important for your psychological well-being. At some point around 5 years ago, I stopped saying that I had Crohn’s colitis. Instead, I said, “I have a diagnosis of Crohn’s colitis.” It made a huge difference for me mentally. Crohn’s colitis is a medical name given to a set of symptoms and experiences in your body, yet every person who has a diagnosis of Crohn’s colitis likely experiences it quite differently. There may be similarities in such experiences, sure, but there are also unique lived experiences. I recommend that you read Rachel Naomi Remen’s books. She is an MD who also had Crohn’s and her books are amazing.

Miscellaneous: Another obvious tip is to drink lots of water and make sure you stay hydrated by also taking in electrolytes (ask your doc about this). Ask your doc to check your levels of key vitamins and minerals from time to time, including vitamin D and B-vitamins (some of the latter are absorbed in the ileum). Some friends of mine with IBD have had a little luck with taking fish oil pills. There are some studies with positive findings on fish oils for some IBD patients. Check the medical research databases and consult with your physician before you try anything new. PeRSSonlized Crohn’s Disease is a new free service that compiles quality medical information.

These tips are based on my own personal experience and are not medical advice. I am not a physician, just an experienced patient who happens to be a health/research psychologist. Please consult with your physician about starting an elimination diet, making dietary changes or trying any probiotics/supplements.

2 Comments (+add yours?)

  1. Trackback: Patience is much more than a virtue « Determined To Heal
  2. Trackback: Ten years later | Determined To Heal

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