I was diagnosed with colitis ulcerosa (inflammatory bowel disease or IBD) in 2000 after a year of fatigue and medical problems. Putting a name and some words on my symptoms was a big relief. I immediately started proper treatment to reduce the inflammation, and remembering my parents’ advice that ‘impossible is not in our vocabulary’, I managed to continue my studies. I graduated from college four years later.
All went very fast then: I got a job, got married and moved into my house. Juggling between three small children, having a job and doing housekeeping while my husband worked seven days a week can be quite busy: There was simply no time to take care of my health.
Years later, in 2015, my neighbour got diagnosed with colorectal cancer. He told me something that truly opened my eyes: ‘Please take care of yourself and go see your physician!’. It was difficult to admit it then but he was right. I was reluctant but followed his advice and made an appointment with my gastroenterologist. Against all expectations, we had a constructive conversation and tried to find out what treatment could get me back on track and could give me the comfort I needed in my personal life.
After more than one year searching for a proper treatment with my doctor, I felt the need to write down my story about IBD. I started a diary, putting on paper my feelings and experiences on how to deal with chronic illness every day.
I became very ill in November 2016 with severe fatigue, and frankly, getting quite tired of my situation. I was at the hospital when my IBD nurse came in to my room and asked me how I was.
At that very moment, my nurse told me: ‘Please be honest, you really don’t need to put on that happy face all the time, crying isn’t a sign of weakness and it is definitely allowed here’. I think no one can imagine what a relief that was! Tears rolled down and a few minutes later, I was able to share my burden. I showed her my diary and for a moment, it was no longer the IBD nurse sitting there: it was the mom, wife and understanding friend, one who shared my goals and interests, one truly interested in my story.
We are now in 2017, and I am back on track. I finally found a treatment that is working well for me. The past few months have been pretty heavy but also fascinating, thanks to the conversations with my IBD nurse. A person who became my ‘partner’ towards a more compassionate and authentic patient-nurse relationship.
In the meantime, I became an active member of the Belgian patient organisation for IBD patients CCV-VZW with the idea to help fellow-patients. I try to set to new goals towards patient participation and patient advocacy in Belgium with the support of my IBD nurse. We both believe that sharing knowledge and experience may lead to new insights in the treatment of patients.
As an IBD patient, I try to deal with the fact that there are no certainties: flare-ups may suddenly occur and treatments are not guaranteed in time. Nevertheless, science and medicine evolve and new solutions are in the pipeline. We need to spread a clear and positive message of hope to newly diagnosed patients and patients who have to deal with all the physical and emotional consequences of this disease!
Inge Vandelannoote is a patient and works with the Belgian IBD patient organisation CCv-VZW, a member of the European Federation of Crohn’s & Ulcerative Colitis Associations (EFCCA), member of EPF.
You can read other stories from Inge, on her blog here www.ingevdln.blog