Learning to advocate for myself as an IBD patient

Making hard decisions and advocating for what is best for me is all part of being an IBD patient. Growing up, I was knocked down by this disease countless times and had to advocate for second opinions or treatment plans that would improve my quality of life and help me achieve remission. Throughout my disease journey, I was also knocked down by different barriers to care. There were so many times where my insurance company said no or changed the rules, preventing me from seeing my doctor, receiving the medication or nutritional support therapy I needed, denying lab tests or procedures, or even denying a hospitalization prior to surgery. These experiences inspired me to fight not only for myself, but also for others as a pediatric gastroenterologist and public policy advocate. 

In July, I was wheeled into the operating room for my eighth Crohn’s disease-related surgery. When I came to in the recovery room, I learned things did not go as expected. The surgeon found a different area that was very narrow and needed to be removed. The area we were originally concerned about on imaging and suspected was causing my issues was concealed by other loops of bowel matted together by adhesions. Separating those loops of bowel would have been challenging and increase my risk for complications. The day after my eighth surgery, I had to make the very challenging decision, after consulting with my gastroenterologist and surgeon, to go back to the operating room to further explore this section of bowel. Luckily, everything worked out well without any complications. I weighed the risks and benefits of another operation and discussed it with my medical team, which helped me advocate for what I felt was best for me. 

Recovery from two surgeries in 48 hours was not easy. Unfortunately, due to having had multiple surgeries previously, I had to have an open procedure rather than laparoscopic. Throw in being hospitalized during a pandemic, and the recovery was stressful for me and my family. I was hospitalized for six days and during this time, I wore my mask, especially when I took walks or people would come into the room. I did not find it challenging to wear, but I also had years of experiencing wearing a mask as a healthcare provider. I was on edge more during this hospitalization than previous ones, nervous that anyone I encountered could potentially have COVID-19. One night I got a new roommate and I overheard through the curtain that he was going to be tested for COVID-19. He was supposed to be admitted to a different floor, but because he was not negative for COVID-19 he could not be admitted there. I was extremely mad that it was not safe for the patient on the other floor, but it was safe for him to be less than six feet apart from me. I was nervous to share a room with someone that had not yet tested negative despite not having any COVID-19 symptoms. I advocated to the hospital staff that I did not feel comfortable with this situation and they were ultimately able to switch my room. 

I think it is time for hospitals to implement further measures to make being hospitalized less stressful. Sharing a room and a bathroom with someone while recovering from surgery or during a pandemic is unacceptable in 2020. The curtains between beds do not allow you to have personal private conversations with your medical team and your family. Not having to share a room would also improve a patient’s ability to recover, get sleep, and create a better environment for healing.  It would limit the number of interruptions from the medical staff, machines beeping, and volume of your neighbors tv that would keep me up. Hospitals should prioritize finding ways to create a relaxing, therapeutic, and less stressful environment that is conducive to healing and privacy.  

Once I was released from the hospital, I was faced with a new set of recovery stressors. Trying to be safe during the COVID-19 pandemic, concerns about missing work, and stress over figuring out what my family was going to do to manage back to school for our little girls all impacted my recovery. I have had good days and bad days, but little by little I am starting to feel normal again. Four weeks after my surgery, I started to ease back into work. I felt the pressure to make up for lost time and had to remind myself I was still recovering. I started by working a few hours a week from home, gradually increasing those hours until I felt comfortable starting to return to seeing patients in person.

I am getting closer to feeling 100% and I am almost back to eating a regular diet without any pain or fear that I will get obstructed. I know I still need to take it one day at a time and try not to push myself to much because it is going to take me some time. During my recovery, I have been faced with making tough decisions and having to advocate for myself. It took me many years to learn to advocate for myself. My advice to other patients is to learn as much as you can about your disease. Ask questions of your healthcare team. If you do not understand something, ask them to explain it. Bring a friend or family member with you to appointments to help advocate for your needs. And reach out to the Crohn’s & Colitis Foundation if you need additional information or support.

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. You can read Dr. Maltz's first blog post here.