This year I have had my ileostomy, Oscar, for 5 years. When I think back to when I first had my ostomy, I am so happy to share how much my mindset has changed.
Prior to me having a colectomy and resulting ileostomy, I was on Total Parental Nutrition (TPN). I had a Hickman catheter in my chest, similar to my port-a-cath, and received 14 hours per day of intravenous therapy. My body was not adjusting well to TPN and we knew we needed to find an alternate plan. It took a long time for me to warm up to the idea of having an ileostomy and the discussion of a potential ileostomy was a slow, ongoing one. Once I was ready to learn more about the process, it was revealed this surgery was experimental and I could still need to be on TPN. With the knowledge of unknown success, the risk of the surgery was very daunting. My symptoms continued to worsen and I ended up in the hospital needing to go ahead with the surgery despite my fears.
Leading up to the surgery, I was very afraid of having an ileostomy. I was anxious about what my life would be like, what people would think, and of course the big question if it was going to work. I did not want anyone to know that I was a having a surgery that would result in an ostomy. I was so embarrassed about the idea of having a bag on my stomach for the rest of my life. Outside of my husband and my parents, I did not want anyone to know. If anyone asked, I only wanted them to know I was having surgery to assist with my condition, Diffuse Irritable Gastrointestinal Tract Syndrome (DIGITS). It deeply saddens me to reveal how ashamed I felt about having to have an ostomy. I was full of fear and could not imagine how anyone lived with an ostomy. I did not know anyone who had an ostomy, nor did my parents. Our understanding of what living with an ostomy was like was fairly limited. I know I was definitely concerned with the aesthetics of having an ostomy. Would people notice my stoma? How would I hide my stoma? How hard is it to take care of it? What will people think?
I know for me part of the difficulty in accepting an ostomy in my life, was the inability for me to get better without such a drastic intervention. I thought I was not trying hard enough to get better and I was frustrated I could not get better on my own. I felt I was doing something wrong. If only I could be stronger, tougher then maybe I would not need to have an ostomy.
One of the most magical moments in my life was after my colectomy. I was still in the hospital recovering from surgery and I was still processing having my ileostomy, Oscar. I asked my husband what he thought of Oscar. He did not say anything but lifted the blanket off my stomach and kissed my stoma. I know to those without stomas this may sound like a strange action but to me it was the ultimate acceptance of me having Oscar. My husband was grateful for Oscar as a treatment because this gave us the possibility to continue our life together. I wish I could say that I saw the beauty in Oscar that my husband did that day but it has taken me much longer to see how beautiful Oscar really is.
The good news is I no longer needed to be on TPN once I recovered from the surgery. I still require a central catheter for hydration purposed but having Oscar in my life has given me the opportunity to enjoy food again. My diet is very restricted and digestion remains to be an obstacle but I continue to learn and try to find foods that work for my body. Ideally my post-surgery recovery would have included DIGITS not being in esophagus, stomach, small bowel, and bladder but the good news is having Oscar proved to be a benefit. I can EAT!
Since I have had Oscar, I have been fortunate to work with my doctor and other brave individuals commencing our non-profit organization to support research for DIGITS. Our DIGITS organization is affiliated with London Health Sciences Foundation. We have had support group meetings, fundraising efforts that include book sales and our Gala, and have continued to raise awareness through further advocating and social media through our website (www.digitsyndrome.ca), facebook, and twitter. I have been fortunate to continue my studies and am presently pursuing doctoral studies focusing on the academic experiences of students with chronic gastrointestinal illnesses. It has become my personal mission to share with the world that despite having a chronic illness and ostomy, it does not diminish my desire to continue to pursue my dreams. I may need to take an alternate path but I can make my dreams come true.
In the years since having Oscar, I have gone from being afraid of anyone knowing about me having an ileostomy to realizing Oscar is one of the best medical interventions in my life. Oscar has given me the gift of life. I am no longer afraid to say that I have an ileostomy, it is quite frankly the exact opposite, I am proud. I am still working on my confidence but it is getting better over time. I never would have thought that I would be writing about my life with a chronic illness and an ileostomy. I have learned that despite my port-a-cath, Hope, and my ileostomy, Oscar that in my own way, my body is beautiful.