It has been a long time coming for me to switch from Dr. V. to a different gastro. I went from my pediatric gastro to Dr. V., so I've been his patient for over a decade. During that time, I have always had frustrations with the office staff and his numerous nurses over the years. They rarely return message and they often ignore requests (refills, prior authorizations, etc.) Their Patient Portal has made communication with them a little easier and kept them more accountable, but I'm still shocked whenever they get back to me. Recently, my nurse left for the day when she knew I was on my way to the office to get a test kit from her.
To make matters worse, Dr. V. has not been the Dr. I have needed. His style of care is probably the reason I have very little faith in health care. Most of the time, I don't think they can help me, I don't have the energy it takes to cut through all their bullshit to get answers, and I'd rather suffer than waste my time. When I am unwell, he pretty much will just lists medications and ask me what I want to do. I've been blindly throwing darts at the wall and that is not a very good strategy to manage Crohn's disease. Especially, when I am facing bowel resection surgery.
Thanks to a few family and friends that pushed me, I decided to get a second gastro opinion before I schedule surgery. My plan was that if I like the doctor that gave me the second opinion, I would switch to his practice as a new patient. Essentially, using the second opinion as an interview for a new gastro. Numerous people recommended different gastros. I narrowed my search to one practice because I was recommended to three different doctors within that practice.
A policy at this new practice in order to make an appointment for a second opinion required the doctor's approval to give a second opinion. After a few phone calls back and forth with the new practice and waiting around for responses, the first doctor on my list denied to give me a second opinion. Therefore, I could not make an appointment with him. It really pissed me off when the first doctor on my list denied me! Sure, there are two sides to every story, but the side I'm on makes him look like he lacks confidence in his specialty and only wants easy patients that come to him healthy. The second doctor on my list was booked out through October, so I didn't even try to get his approval. I was told the last doctor on my list does not typically approve second opinion appointments. The scheduling lady was very helpful and suggested that since this is time sensitive and I didn't want to wait a couple of months for an appointment, I seek approval from their newest gastro in the practice whom I've heard nothing about from friends. The scheduling lady told me he has approved every second opinion request she has brought to him. I agreed and Dr. K. approved me to make an appointment to see him. In my search, I learned a valuable lesson. Next time, I would not mention I was seeking a second opinion. Rather, I would just try to transfer as a new patient.
My appointment with Dr. K. was on Thursday, September 7th at 5:30PM. I was only on the second page of the paperwork they gave me to fill out when the nurse called me back at exactly 5:30PM. She weighed me (164 lbs.) and showed me to the room. I sent a quick text to Badass Doreen to let her know I was in the back already. Dr. K. came in the room at 5:32PM!!!! My first thought was that this guy wants to make a really good first impression. I let him know my friend was stuck in traffic, but would be there soon. We went ahead and got started by going through my history with Crohn's disease. Thankfully, Doreen didn't miss much. Dr. K. blew me away with his knowledge of the different medicines available and the science behind how they work. He really educated me and made sure I understood by answering our questions. He even stepped out of the room to consult his colleague to verify he was giving me the most accurate information he could. The bar was low going into this appointment, but Dr. K. significantly exceeded my expectations!
Dr. K. did confirm that no medicine available will heal the fistula and surgical correction is the only way to fix it. Based on his explanations, I believe him. My treatment regimen moving forward depends greatly on the results of the Remicade drug level and antibody test I had done on September 4th. Basically, if I have any antibodies towards Remicade, there is little we can do. We could try to hit the antibodies with 6MP or something similar to attempt to knock down the antibodies. The down side with that is that being on Remicade and 6MP or something similar increases my risk of getting cancer.
Before surgery, Dr. K. would pull me off Remicade anyway because Remicade would slow down the healing process and could complicate surgery. This actually surprised me. If I didn't have antibodies or had very few, I could stay on Remicade. However, by getting off Remicade for a period of time before, during, and after surgery, I could have an adverse reaction when/if I try to go back on it after surgery. By now, you know my sentiments towards Remicade. I am going to be shocked if I have antibodies. I just don't think I have antibodies because of how well I feel. If that's the case, I would be willing to try to go back on Remicade after surgery. Dr. K. mentioned that we could do the free blood test again if that's the case to get a better idea of whether or not I would have an adverse reaction.
If I do have antibodies, I will be disappointed and I will most likely have to decide to say goodbye to Remicade. In which case, I would probably have to get surgery sooner than I wanted to while I'm still relatively well. I wouldn't try new meds before surgery because these drugs are not something you can start and stop and start again on a whim. The meds fuck with my immune system that is already fucked up, so reactions are somewhat unpredictable. Considering that I have two solid medication options after Remicade, I cannot be blowing through them. I do not want to get to the point where I am waiting for different meds to be developed because I've tried and failed all of the ones currently available.
Dr. K. also questioned how I feel about my current colorectal specialist. I told him I had confidence in her. In case I want to get a second surgical opinion, he wrote me a referral anyway to a colorectal specialist that Dr. K. said specializes in surgeries on Crohn's patients at the Cleveland Clinic in South Florida. I was pretty confused by this referral. My one constant was my current colorectal specialist, but I don't know if I can ignore this recommendation to get a second opinion. I can at least see what this guy at the Cleveland Clinic has to say so that I can weigh all of my options before scheduling surgery.
I had no uneasy feelings leaving my old gastro behind (haha). I feel differently about the idea of ditching my current colorectal specialist though. She knows me, my ass, my bowels, and my fucking stricture better than anyone. She has seen it every few months since 2012. This new guy might be more specialized with more experience, but he does not know me like she does. My bottom is a disaster according to my current colorectal. She doesn't understand how I am doing so well or how I am able to control my bowels, but she knows I am doing well and that I control my bowels. The scariest thing going into surgery is the possibility of coming out of it with a stoma. My current colorectal said that she won't know if I need a stoma until she gets in there and sees how it looks. I don't think she will underestimate me and what my body can do because she has seen it do amazing things despite it being a disaster. For that reason, I believe I have a better chance coming out surgery without stoma with her as my surgeon. Whereas this new guy might see the disaster that my bottom is and underestimate my body because he doesn't know it was well as my current colorectal.
There are pros and cons to each decision. I'm really confused even though I have strong feelings about which route I am leaning towards. Currently, I'm awaiting the results of my drug and antibody levels. Dr. K.'s office is working on getting a prior authorization from my insurance, and then will have the Cleveland Clinic call me to schedule an appointment.
Now we wait!
