Walking the line between IBD patient and provider
Published: July 13, 2020
It has been 25 years since I was diagnosed with Crohn’s disease as a preteen. My diagnosis inspired me to want to be a pediatric IBD specialist, and now I am proud to say that I am both an IBD provider and an IBD patient. As a pediatric gastroenterologist in Columbus, Ohio, most of the patients I see are pediatric IBD patients. When I discuss treatment options with my patients and their parents, I try and think about what I would do if this were me. Having the perspective of being a patient allows me to relate to my patients and be even more understanding and empathetic as I treat them.
Although I have had Crohn’s for more than half my life, I rarely talk about it. Why? Mostly, it’s because I don’t like to look back at the troubles I have been through, the countless surgeries, countless times medications failed me, the times physicians failed me, or what I had to overcome to get to where I am today. I love to cherish the good in life and am lucky for what I do have, and I like to look toward the future.
So why am I sharing my story now? Despite having my fourth bowel resection a little over one year ago, I have been dealing with a stricture at the site of my last surgery for about a year. So today I am heading to the operating room for my fifth bowel resection and eighth Crohn’s disease-related surgery to fix the never-ending complications of my Crohn’s disease.
After my last surgery in March 2019, I hoped and prayed it would be five, 10, 20 years before I needed surgery again. Unfortunately, it was barely one. I used up all my sick and vacation days after my last surgery to recover. As soon as I got back to work, I felt the pressure to reaccumulate those days. I was still recovering but I couldn’t take off more time because I already missed eight weeks. Shortly after surgery, I began having small bowel obstructions every four weeks; however, I knew I could not have surgery yet because I had not accumulated enough time again to take the time off I needed to recover. I wanted to be a productive physician scientist and I could not afford to take another leave of absence in order to continue advancing my career and helping my patients. Never once did my employer ever express that they felt that way, but I did. Sadly, the last two years, my big vacations were spent having surgery and recovering.
Deciding to have surgery now was, for the most part, easy. I have been dealing with frequent partial small bowel obstructions. I’m constantly afraid that if I eat the wrong thing or too much, it would cause me to have another episode. I tried using enteral nutrition but it caused severe diarrhea, so I’ve been managing with eating foods that I know are safe for me. When an episode starts, I get a dull pain on my left side of my abdomen. I get distended and could feel a swollen loop of bowel. As time goes on, the pain worsens and I feel nauseous and vomit. Sadly, now when I feel an obstruction forming, I force myself to vomit because I believe if I do not the episode will just get worse.
The hard part about making the decision to proceed with surgery now is the COVID-19 pandemic. I feared undergoing surgery during a pandemic. For the past four months, I told my 6-year-old that we need to avoid people and the hospital because of coronavirus, but now I am going to be gone for a week in the hospital? I put the surgery off four months because of this. I also felt guilty taking off during a time when my patients and their families are afraid. They, like I, are scared of having IBD and being immunocompromised. I did not want to let them down when they were looking for guidance on how to protect themselves or their child. I wanted to make sure that I was there to help them understand the importance of staying on their treatment despite COVID-19 spreading rapidly.
I also delayed my surgery because I was scared to go through it alone without having my wife or my parents able to help me after surgery in the hospital because of COVID-19. Who is going to rub my back, move my tray in, get me into or out of bed, help me rush to the bathroom, push me to take those extra steps on a walk, and distract me when I needed it? While I know I have the support of the doctors and nurses, I also know having a family member there is important for my mental health and emotional well-being. I may not have been the kindest or said thank you for the countless days I have spent hospitalized, but I was dependent on my family and I couldn’t have done it without them. I realize that I took all those moments for granted in the past, especially since I may have to do this partially alone.
While I am worried, I know I cannot put this surgery off any longer and that this is the right decision for me. I hope this operation resolves my issues and does not create new problems. I hope this is my last operation for a long time. I know these decisions are hard for most people; as a medical professional and a patient, it is even harder for me because I know what I should be doing but delayed it anyway. But I trust my medical team and have hope for a peaceful future and look forward to getting back to seeing my patients as soon as possible.
Dr. Ross Maltz is a pediatric gastroenterologist at Nationwide Children's Hospital in Columbus, Ohio and co-chair of the Crohn's & Colitis Foundation's National Scientific Advisory Committee's Government & Industry Affairs Committee. Stay tuned – Dr. Maltz will be writing a follow up post about his experience going through surgery during the COVID-19 pandemic and his post-surgical recovery.