Finding Solace on World Ostomy Day: Shared Experience

Pat is a 26-year old medical student who was born, raised, and is currently studying, in Virginia. He began blogging at www.ibdpatient2patient.com in late January 2015, at the request of a trauma surgeon who asked him to share his experiences of dealing with advanced complications of Crohn’s disease and an ileostomy.

I asked Pat to share his inspirational story on my blog in honor of World Ostomy Day. This year, the theme is “many stories, one voice”, and World Ostomy Day is celebrated on October 3, 2015.

Pat’s Story

Pat (back row, second from the left) competing in a 10K with an ostomy 4 months post-op.

Possibly referring to Robert Frost’s “The Road Not Taken,” the late Yogi Berra once said, “When you come to a fork in the road, take it.”

Reflecting on these words following a traumatic medical event, as well as healing with a chronic disease, made me realize that my psychological recovery was quickly outpaced by my physical one. I can say that the fork I am most proud to have taken, the road less travelled I decided to walk, was addressing the psychological problems.

For over a decade, I dealt with chronic disease in virtual solitude. These burdens came to a head when I became an ostomate. It isn’t easy to share this personal reflection. But I am fortunate to have had a eureka moment – a moment where I found motivation to truly heal. My hope is that by sharing my story, others, too, may find solace on World Ostomy Day.

The Day I Became an Ostomate

December 10th, 2014 was a routine day in my medical student life. I awoke early, and sat for my Population Health exam. Afterwards, I got coffee with a classmate, then continued studying. As I slipped into bed that evening, I recall looking at my bedside clock, 10:40 PM. The respite I expected was replaced by searing pain.

I stumbled out of my room dripping in sweat, moaning for help from my roommates. A five-hour blur ended when a team of surgeons entered the room where I lay grimacing, “We have the CT results, you need surgery now…Do you want it filmed?” “Absolutely,” I replied. That is the last thing I can recall for the next four or five days.

The pain, caused by a perforated jejunum and peritonitis, left me an ileostomate with a collapsed lung, intubated for 3 days, and febrile in the ICU for two weeks.

In the coming weeks, I would be asked repeatedly how I had felt the day of the perforation. Fairly normal, I thought, fatigued and in pain, unfortunately par for the course for many with Inflammatory Bowel Disease. Paradoxically, at the same time, I have always considered myself blessed physically. I lead an active lifestyle and I’ve been able to remain fit, so much so, that despite serious flares of Crohn’s disease, I was a collegiate scholarship athlete.

From my hospital bed, I was confident that over time, and with the help of my loved ones and physicians, I could bounce back quickly. I assured myself that this is just a physical process, and I’ll get through it as quickly as possible.

The Naiveté of Inexperience

At that time, I had no idea how significant the psychological hurdles toward becoming a happy and healthy ostomate would be. Not only was I completely ignorant of all things ostomy before I woke up with one, I also was actually a poorly adjusted patient with chronic disease.

You see, since the age of 12, I had hidden my disease from everyone I knew, including my parents – only opening up just before turning 18, out of fear for whether I could complete college. I lived my teenage years so isolated and embarrassed of my symptoms that I gambled with my life for about six years in order to hide my disease.

This surgery, and consequent total reliance on others, brought down the insulating walls I had constructed.

For the first time, I truly had to allow others into this fragile and painful aspect of my life. As my hospital stay pressed into its third week, I was still struggling mightily with the incentive spirometer, but I was most troubled by the possibility of a prolonged recovery that would take me away from school.

I asked myself daily, press on with my education, or wait to heal? Would I have the strength to stand through anatomy labs, or focus on exams while on pain medication? How will I have the energy to wake up at 12, 3 and 6 AM to drain my pouches, and then study for the whole day?

To me, the physical isolation of feeling ‘anatomically different’ from my peers was minor compared to having something that I hold so dearly, my education, suddenly stripped from me. Throughout my life, I used my studies as an escape from Crohn’s disease. Studying allowed me to lose myself in thought, and it is a place where I can forget about the physical pain that has riddled my past. It is where I don’t need to explain why I may not have energy. It’s the place I relied on to get through so many years of pain.

Now this was gone, and I blamed my ostomy.

Acceptance

The morning after my second discharge – I had been readmitted for a suspected enterocutaneous fistula – I carried three bags to my hematology lecture. One for my computer. One for my stoma. One for my draining wound.

I nearly completed the week. But after shuffling to class, I felt defeated. The impending decision to take a leave of absence from school was remarkably clear to my physicians and family, yet nearly impossible to accept.

I tearfully informed the Deans that I would require a leave of absence. Their comforting words fell on deaf ears. I was ashamed that I needed time off, ashamed for being tearful, ashamed that I will not graduate with my roommates, and ashamed of my imagined defeat at the hands of Crohn’s disease.

Resentment continued to mount, and all the bitterness for having to stop my education was misplaced on the very thing that had saved my life, my ostomy.

Connection

A mentor and friend, who has been beside me every step of my recovery, recognized that I needed to stay connected with the medical community. They invited me to scrub into an ileostomy reversal surgery in a patient with Crohn’s disease. Figuring it would be compelling to peer into the jaws of my own disease and after considering how few ostomates likely have had such an opportunity I decided to go.

The decision to attend this surgery, despite being embarrassed by my own filling ileostomy pouch, would initiate my psychological recovery and change the narrative of my year away from something negative to a time of tremendous personal growth.

As I was looking down at the long knotted scar before me, much like the one I bear, I wondered what brought this person to the operating table. What had they given up? What did they have to stop? Would they consider themselves similarly defeated by Crohn’s disease? Whose abdomen was I really looking into?

My thoughts turned to my past, present, and future, and I realized that despite being separated by so much, our paths are inextricably linked through not only our pathophysiology, but more importantly our life experiences.

When the NG tube was called for, I winced and felt truly sorry, I knew how terrible it feels. Through the incisions, suctioning, surgical smoke, beeping alarms and stitching, the surgeon explained that this patient had undergone at least two previous resections. They did not have a quitting bone in their body.

Seeing the inimitable strength of a more experienced patient with whom I share a diagnosis had an indelible effect on me that I know will reverberate throughout my life. I glimpsed into my future, and this patient showed me that it will be okay.

Gratitude

If I were able to talk to this patient I would simply thank them.

I would thank them for showing me that I am never alone – and that my normal is shared by others. For showing me that this road less traveled is filled with strength. I would thank them for having true strength, when I did not, and showing me that we have not been defeated.

I would thank them for giving me the resolve to start addressing the slowly healing psychological wounds that are essential to health, regardless of chronic disease status. I would thank them for helping me feel connection, and making me realize that our stories are anastomosed. I would thank them for helping me heal, and for teaching me that there is no pausing my medical education – only profound human lessons.

Return

In January, I will return to medical school as an ostomate. But more importantly, I will return as a happier, healthier, and more complete person.

I am ready to tackle what lays ahead, and I owe the ability to do so to the pouches I once resented, but more so, to the unwavering support of a small army that includes my long term physicians and surgeons, my inspiring grandmother, my parents, nine siblings, aunts and uncles, girlfriend, friends, wound care nurses, mentors, other patients who have taught me so much, and my fellow companions at support meetings. These people have stood by me since day one, and when I require additional surgeries, they will be there for me.

Like countless others with chronic disease, I know that a challenging road lies ahead. What I didn’t expect was that while on this journey I could find peace, meaning and inspiration though the example of a fellow ostomate who travelled before me, and provided strength and encouragement without ever knowing that they had.

Finding Strength as an Ostomate

I am beginning to feel my own strength build, not physical so much as a psychological ease. It compels me to use my skills to continue learning everything I can about IBD and ostomies, and help others in the future.

If you are a person with an ostomy or deciding whether to undergo surgery do not fear physical or psychological solitude, you are not alone. Talk to a well-adjusted ostomate, you will likely find that there is incredible strength in individuals who have walked this road less travelled ahead of you. Join an online community, or if possible, find an in-person support group through the UOAA.

If you need help, seek it. I have, and that has made all the difference.

Pat is now involved in efforts to establish evidence-based patient education services at his medical center for new ostomates, and researching their implementation and effect on outcomes over time. Recognizing the lack of support for young ostomates or patients with Inflammatory Bowel Disease in his community, he along with two friends have established a Crohn’s and Colitis Foundation of America support group. He has a passion for learning about and helping those with IBD and ostomies, and his current academic interests include allergy and immunology, pharmacology, gastroenterology, and hepatology.