With most chronic illnesses, having a good relationship with your doctor is hugely important but for patients with Crohns disease or ulcerative colitis, I believe it to be exacerbated. The reason for this as I see it is because there is so much unpredictability in this disease, no concrete way to go in terms of treatment, and IBD pretty much turns your world upside down. Not to say this doesn’t occur with any chronic condition but given the embarrassing nature of inflammatory bowel disease, the isolation that often occurs, the fact that most people have no idea what you mean when you tell them you suffer from Crohns disease or ulcerative colitis, causes patients to feel a particularly close bond with their physician.
For me personally, even when things weren’t going well, I couldn’t fathom being operated on by a different surgeon. After needing so many surgeries, my parents asked me to consider having one of my doctor’s partners take over just to see if it changed my luck around at all. This other surgeon they wanted me to go to was more well known than my current one so it wasn’t like I had no idea what his skill level would be. I knew he was the best of the best and I knew medically I would be in just as good, if not better, hands than I was with my doctor.
My response to my parents was “Do you think Dr. B could just do the surgery but Dr. G could take care of me in the hospital and I could see him for follow up appointments?”
I said that hopeful but knew realistically that wasn’t how things worked.
I never changed doctors because I looked at every other patient at Mt. Sinai Hospital and felt terrible for them that they didn’t have someone as wonderful as my doctor on their team. My doctor was a human being who knew me and my family well – unfortunately and fortunately if you know what I mean. As I have mentioned many times on this blog, the ER, recovery room, and hospital were the scariest things to me. When I turn the volume on my phone on, it startles me since it takes me right back to hearing IVs and monitors going off randomly just as I was trying to calm down a bit. I can feel my heart racing which is why I actually leave all of my electronics on silent unless I am expecting a call or message from someone.
I also was and still am petrified to eat in the hospital. After my Jpouch surgery, I had so many complications including a resident needing to re-open my incision at my bedside with no anesthesia since I had such a massive wound infection. I was under the care of a different doctor at that time and one of the things I had to do in order to go home was eat. I understand the rationale behind it but at that time, unbeknownst to me, my doctors or my family, fistulas and abscesses were forming in my pelvic area which was causing me to become full and in pain from eating a tiny bite of something. From then on, I wouldn’t eat in the hospital aside from a cracker here and there. I was too afraid it would cause damage that would alter my discharge plan.
My doctor knew and understood this so before every surgery he made a deal with me that I had to be able to drink a certain amount in order for him to allow me to leave the hospital. I know medically they don’t want to release you after bowel surgery until things are moving but I had been through enough of these types of surgeries to know that if I could handle a certain amount of liquids, I was okay enough to be home and then eventually eat when I was in a safer environment where I didn’t view eating as much of a threat.
I developed such a bond with my doctor because of everything I had been through and because of what he and I had been through together. I looked at him as someone who was going to protect me from the moronic medical students, interns, residents, and all of the other people who came into my hospital room wanting to do tests, take needless blood, and use me as a guinea pig. My doctor knew I needed a central line every time I came into the hospital since I had no veins left and this wasn’t a fight like it was with other doctors. He knew I wanted to get off the IV pain medications earlier than the norm since it made me one step closer to getting home.
I never trusted another doctor to take care of me in the same way. I knew that when someone would come into my room with new orders or medications, either I or my parents could refuse it until we spoke with my doctor who would explain intelligently why I needed to be on it as opposed to hearing from a nurse, “well Dr so and so who has never seen or spoken to you believes it would be beneficial.”
I know so many IBD patients who find a gastroenterologist or surgeon whom they trust and connect with and the thought of switching doctors is truly terrifying for them. Once you establish a relationship with someone and feel confident that they know you well and have your best interest at heart, you cling to them. Crohns disease and ulcerative colitis come with so many unknowns so having a stable force in your treatment plan is vital to patients. It is a shame because knowledgeable doctors who are kind and understanding shouldn’t be so hard to find hence the post I wrote Why Are We So Impressed When Doctors Do What Doctors Should