Well considering it’s been a long time since I’ve written I have a lot to tell you all, assuming you were all wondering what’s been going on in this glamorous life of mine 😉 I just downloaded the WordPress app on my phone since I had gotten a new one and some of the comments people have left since I’ve been on last have definitely made me want to be more active again on this. I miss my fellow Crohnies on here!
Let’s start with the totally awesome news! My doctor did a colonoscopy and my disease was still active but much more mild. Because of this I am still doing the Entyvio infusions once every eight weeks. (side note: anyone on Entyvio- a fairly new drug- experience sever fatigue the 24 hours after infusion?) And just a fun fact, it was my first colonoscopy EVER that didn’t send me into a flare! Woohoo! That was back in December. Since then, I have gotten even better. My exhaustion is slowly going away. If you’re a Crohnie you know this could possibly be the biggest miracle ever because some people in remission still have that lag, especially if you’re on an immunosuppressant . I am back to working out at least four days a week and eating pretty healthy. I also started taking krill oil and a probiotic (the really expensive good quality ones you have to keep in the fridge, I don’t recommend taking the cheaper Walmart shelf ones). I really think these two things have helped aid in me feeling so good. I have gotten past my rebellious “I took so many pills for the first fifteen years of my life I refuse to take anymore!” stage lol. I realize how much these supplements help me. I do not take a multivitamin though, and I have my own personal reasons for that… Which I actually am probably going to write another blog on in the future. But anyways, it’s so nice to experience having energy. This sounds pathetic but I really never realized in my 22 years of life what it felt like to get through a day without being fatigued. It’s great!
Onto another topic, I have so many people to thank in my life lately. One being my mom, as you all know she’s my best friend and been my rock my whole life. But people have really stepped up to the plate per say in being a friend and being more active in my life. And I have tried my hardest to return the favor. I’m not going to name names because you know who you are if you’re reading this. I’ve had some of the same friends for a while now, girls and guys, and as you get older you appreciate those relationships more. You also learn who to trust and who will be there for you. I’ve done that this year and I’m very lucky to have some of these people in my life. So thank you!
I’ve also kept in contact with my old doctor from Boston Children’s which I think I’ve mentioned before. And even though he’s now across the country, he deserves the recognition. He helped me through some of my hardest times a few years back when my disease was at its worst. He dealt with several hospitalizations, arguing with Springfield doctors with the egos the size of Texas, me crying my eyes out laying in the hospital bed, along with all the frustration. I am so lucky to not only have been treated by him but developed such a good patient-doctor relationship with him. I truly appreciate everything you’ve done for me Dr. Essers! (If you are reading this that is haha).
Another person I owe a big one to is my current doctor. He’s probably the only reason I still have all of my intestines and I’m not pooping into a bag. He’s worked so hard on my case, tried so many different medications, consulted with people across the country for me (per my mom’s request at the mayo clinic lol smh). He’s also been a huge help with my transition from pediatrics to adult medicine. I’ve also developed an amazing relationship with him as well. I’ve been so lucky with the doctor’s I’ve had, and honestly I owe my life to them. They aren’t only phenomenal doctors but amazing people!
I just felt the need to thank these people. Without them I wouldn’t be half the person I am today! I will be back soon to write but in the mean time all my New Englanders stay safe with this crazy weather coming our way!
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.