“The world breaks everyone…and only some become strong in their broken places.” Ernest Hemingway
January 2, 2014-I felt broken in the quiet of the night, listening to the hum of my IV pump beside me and the constant tick of the clock on the wall. I had been battling my own body for 11 years, fighting the horrific abdominal pain, humiliating accidents and medication side effects. While my friends spent their 20s and 30s looking for the perfect party, mate or baby name, I spent my time looking for the next bathroom and wondering if this was the time I wouldn’t make it…and sadly sometimes I didn’t. Starting at the ripe old age of 22, it quickly became my norm to be hospitalized one to 4 times per year, have a colonoscopy, severely restrict my lifestyle and diet all due to two words-ulcerative colitis. Though I was a nurse and prided myself on caring for others, my body wouldn’t allow me to care for itself and on December 23, 2013, my heavily diseased colon was removed and “Mabel” my ileostomy was created. An ostomy is a surgical opening in the abdomen that allows bodily waste products-stool or urine-to exit the body into a collection pouch and the ileo portion just means it was created from my small intestines. My initial hospital stay turned into a 12 days of tears, medical mistakes and overwhelming fear. Though I knew of the surgery and had cared for patients with ostomies, it was completely different now suddenly being the patient. The reality came crashing home at discharge when we realized my shirt wouldn’t cover the pouch. Tearfully I asked my nurse if I could tuck it in my jeans because all I wanted to do was be normal and stop at the grocery store for Cheez-its. (P.S. You can tuck it in and it was all good).
Adjusting to my new normal with an ileostomy was difficult dealing with skin issues, hydration as suddenly I needed to drink more than 2 liters of fluid a day to prevent massive dehydration, clothing options and most importantly, the battle within my own mind. There were many tears….oh so many tears.
One day though something magical happened. I found an on-line support group for individuals with an ostomy and suddenly I realized I wasn’t so alone. Through that website, I attended my first support group meeting with the United Ostomy Association of America. At that first meeting, I found myself and my life goal to life the life I wanted and work with individuals just like me so they would never have to feel so alone. I did have 3 more surgeries in the following 6 months where a j pouch was created from my small intestines. Simply put, a j-pouch is an internal reservoir made from my small intestines in the shape of a J and stapled to my anus. I still have my sphincter muscles so I do have bowel movements but they are liquid and in excess of 10 per day. I struggle daily missing my colon as a main function of that organ is to absorb fluid. Thus, without that organ, I need to consume at least 2 L of fluid (mainly electrolyte based) per day. Also, there are related skin issues due to the acid content but that’s all probably more than you wanted to know. Simply put, I still have the same issues of skin breakdown, pain, leakage and hydration with my j pouch as I did when I had my ileostomies (I had two). However, I made my dream come true of helping others by starting “A New Normal” an ostomy support group for individuals and families affiliated with the United Ostomy Association of America (UOAA). We meet on the 3rd Wednesday of the month at the University of Michigan and though it’s a small group, it’s growing! I was also fortunate to be elected to the Management Board of Directors for UOAA and was seated in January.
So what does someone who struggles with hydration, rediagnosed with crohn’s recently and now on immunosuppressant medication with issues decide to do? Well simple really-go on a 2300 mile escapade of a lifetime on a Harley. Yes, my husband and I will travel in August on a Harley Ultra motorcycle from the suburbs of Detroit crossing the heartland of America to route 66 and finally through the Mohave desert in 100+ degree heat to Irvine, California for the 6th National Conference for United Ostomy Association of America. This means 9 nights on the road and at the end of it all, I will then be a presenter at the conference as well as social event planner.
Why would we even do this crazy thing? Well, life is simple really that it all boils down to 2 choices when you are knocked down by life’s hardships. You can either chose to remain laying down or you can chose to stand and fight-and I chose to fight. We will be raising awareness of living life with an ostomy or continent diversions and more importantly, showing people that there is no limit to what you can do. My husband and I are paying the entire travel expenses ourselves and this includes 9 nights on the road, gear, food, etc. We are asking all people who will be watching this journey to please in our honor of this courageous, slightly insane journey donate to the United Ostomy Association of America by clicking on the donate button to the right. They are an amazing non-profit who promote the quality of life of individuals living with an ostomy or continent diversion (that’s me) through education, advocacy and support. You may not pick the life circumstances given to you but you always pick how you handle them. Yes, it may require adjustments…many adjustments but you are still in control!
“This is just a bad moment, not a bad life”. My husband Terry created that saying for me to get me through my darkest days and that will hold true with this trip. It is absolutely terrifying to know there are so many unknowns-the weather, my body and fatigue aspect, my husband’s ability to drive hundreds of miles and then still care for me as well. Yes, after driving some days for 400 miles with the constant vibration of the throttle, Terry will then need to skillfully place IVs for me multiple times through the trip and will administer IV fluids to keep me hydrated. Fortunately for me, he is skilled with placing IVs as a nurse himself but I am not an easy “stick” and the odds are huge that he will probably place at least one if not more in my foot for access. He also has his own medical need to attend to as well.
Why take the risk? Though I know it will hard, painful and probably produce many tears, in the end, I will see the country and know that my disease and surgeries do not define me. More importantly, it is possible with an ostomy or a continent diversion to live the life you want and though it may not be your normal, it can be your new normal. Besides, who wouldn’t want to see America on the back of a motorcycle?