When I was in highschool my case of Crohn’s disease was so difficult I was not able to be treated in the Springfield area anymore (where I live), the medicine was just not advanced enough even though I had a very good doctor. I had consulted with different doctors in the Boston area before but it never became so real until I was transferred from Baystate Hospital to Boston Children’s Hospital my freshman year of college by ambulance. I was sick with kidney stones, a kidney infection, and a flare in my Crohn’s. There in Boston at the hospital I met my new doctor for the second time, Dr. Essers. The relationship with him from that day on was amazing. I was so happy I came to Boston even though I was two hours away from home. They set me up with a social worker to help me decide how to move forward with school because I had to withdraw from my first semester of college. It felt as though everyone was on my side and there to make me feel comfortable despite what I was going through. The rooms were spacious, the walls were bright colors, and every nurse and person working always had a smile on their face. They made sure my mom was comfortable and had a place for her to sleep. We were just taken back by the bedside manner and genuine people that surrounded us. After that day BCH became somewhat of my second home. I fit in and no one even looked at me strangely as I walked through the halls dragging my IV pole behind me. They encouraged me to get up and move around. I can now say my experiences at BCH were the best experiences I’ve ever had. After two years of care there one of the saddest days so far on my journey with Crohn’s Disease was when my doctor told me he was moving to Washington State. I was speechless. He lead me through my hardest times with my disease and even if he didn’t have an answer to my problems he was willing to try anything. The relief he gave us throughout my care at BCH was unbelievable. I knew in the back of my head he would set me up with another great doctor and that he did.
Thankfully my new doctor worked at Boston Children’s as well as Brigham and Women’s. He is one of the best doctors in the country and was also into research, which was what I needed with my difficult case. I stayed with him at Boston Children’s until I had a big decision to make after failing almost every treatment they offered. He wanted to start me on Stelara. This is a medicine very new to the IBD world and is only offered at Brigham and Women’s hospital. The smart decision was to transfer my care to The Brigham. So we did exactly that. It was very different for us and after that day everything changed.
It was a cold day at the end of January, I can remember it like it was yesterday. My mom got off the phone with my doctor in Boston and told me to pack a bag, he wants to admit me to the hospital. After our two hour drive to Boston and several bathroom pit stops along the way we made it. We didn’t have to wait long but as usual I had to fill out paper work. I sat down with the lady in the admitting office and she went over everything with me. I learned I’d be in a room with another person.. As I heard this the tears started coming. I couldn’t imagine being in a room with someone else as sick as I was then. I was having several bloody stools a day and the embarrassment of stool samples left in the bathroom with another person in the room was horrifying. My mom called my doctor to explain the situation and turns out he wanted to check me for C-Dif (a very contagious infection) so I did need a room by myself. That was a relief but this was the hardest transition I’ve had yet with my disease. The pediatric and adult treatment were worlds apart. From medical methods to bed side manner there was nothing you could compare.
I laid in the dark white hospital room and cried my eyes out, all I wanted to do was go home. Then doctors and nurses would come in to ask me questions or check on me and I noticed they were ignoring my mom by just talking to me. I know this is a crucial part of taking over my own care as an adult but we were always a team. My mom and I did everything together pertaining to my care. Two sets of ears helped us through my struggle and better understand everything. Right then and there I felt alone. They no longer wanted to hear from her and it was all on me now. If you’re around my age (21) you know what I am talking about. As awful as this all may sound I had an amazing and intelligent doctor helping me through the process each step of the way. The team working with me at Brigham and Women’s Hospital was great. It was where I needed to be. At the end of my first stay there my transition was complete and I had finally accepted it. I knew they were some of the smartest people in the country and had the most advanced medicine for IBD.
I still keep in touch with Dr. Essers to this day, as I hope I always will. I was sad to see him go but I’m so thankful he set me up with such a great doctor. I continue to receive the best care I can possibly get. Transitioning into the adult medical world takes an emotional and physical toll on you. It is hard getting past all of the changes into realizing it is just another step in the right direction. But I promise you it will be one of the best transitions you will make for your health. IBD is an ugly disease with no cure. If you have a doctor you don’t like or who isn’t giving you the care and attention you need, you need take control of your care and go see someone else. You might think it is going to hurt their feelings but in the end that doesn’t matter. You’re health should be your main priority and you cannot let a doctors ego get in the way of that. A good doctor will be willing to help you get the care you need even if it means losing you as a patient, and a good doctor will work with others to better your health. Adult medicine is also very different from pediatric medicine. There are a lot more trials and different methods they use. My mom is still always by my side but I now make more decisions and am learning each and every day the importance of being able to do this on my own. I am looking forward to the future of the developing medicine Boston will have to offer me. I am now confident in saying my transition into the adult medical world was one of the best decisions I’ve made so far, and yes I made this decision on my own, as the twenty one year old that I am.