This time last year, I was spending my days hanging out in a hospital room, drinking nothing but clear liquids while having TPN pumped into my veins. I had convinced the doctors to let me hang out for a week, just to see if a clear liquid diet would give my bowels enough of a rest to avoid undergoing ostomy surgery. Spoiler: it was not. I’ve been reflecting on the events that led up to that hospital stay and, ultimately, the ostomy surgery that succeeded it. I keep wondering if it had to come to this. Could adding one pill have prevented me from having a bag of excrement attached to me all day, every day? Did my doctor do his job? Did our health care system fail to do its job? I’m not sure of the answers to those questions, but let’s go through what went down, and we can decide together. Sound fun? Let’s go!
Note: All names in this story have been changed. I’ve been sued for defamation before. I won’t get into details. I wrote a damning yet accurate online review. The business owner didn’t like it, so he sued me. It was a very messy fiasco. I had to get a lawyer and testify before a judge. In the end, I won the case, and the review is still up online. In fact, to this day, Google will periodically send me an email telling me someone found the review helpful. But I digress. I don’t want to go through that again. So, I changed the names.
I’ll start the story in 2010. I had just graduated from college and moved back into my childhood room in Milwaukee, WI. I was living big. I had a job, a roof over my head, and a pantry full of free food! However, I needed a new GI doctor. That’s when I first met Dr. Butts. I didn’t do any research or particularly choose him. He was assigned to me by a local healthcare network, and I was okay with that. I felt “good enough’” and just needed to doctor to make sure I continued to receive my Remicade infusions on time.
The relationship started off great! He was young, ambitious, and he liked to talk basketball. Those are all important qualities to seek in a physician, right? I told him that I felt “good enough,” and he seemed determined to get me feeling “great.” He prescribed me Azathioprine (Imuran) to complement the Remicade infusions I was already getting. Over the next few years, I began to see my health dramatically take a turn for the better.
In addition to the new yellow pill, I also made my health a priority for the first time in my life. I joined a gym and started to eat like an adult human man. With calculated eating and regular gym sessions, I was able to pack on 25lbs of pure muscle. I was looking and feeling like an average person. I still had symptoms, mostly irregular bowel movements where I wouldn’t go for four days, then I would have a day where I would spend six hours shitting. But heck, that was manageable! I continued to see Dr. Butts every three months and began to report to him that I felt “great.”
Slowly but surely. I saw Dr. Butts less frequently. First, the appointments understandably got pushed out to every six months. Then, one day, as I was checking in for a routine appointment, I was informed by the lady at the front desk that I’d be seeing Dr. Butts’ physician assistant, let’s call her Laura Worst, instead. I liked Laura a lot. She had the empathy and understanding that Dr. Butts lacked, which made the appointments less stressful for me. I particularly appreciated that she didn’t brush me off when I brought up concerns about medication side effects.
Initially, I would see Dr. Butts every other visit. That seemed fair to me. However, at some point, that stopped, and my office visits were exclusively with Laura. Listen, I get it, doctors are busy people, and there are only so many of them. Why waste their time on a patient who has been doing well? The problem, I suspect, is that when a doctor stops getting facetime with a patient, that patient stops being a priority to the doctor. This is where my story takes a turn.
As I continued to fine-tune my diet, focusing on eating whole foods and eliminating processed garbage from my diet, I was routinely telling ol’ Laura that I was feeling great (aside from the 6-hour dumps). One day during a routine GI follow-up visit, she advised that we make some changes to my medications. She wanted to eliminate Azathioprine from my list of medications. She explained to me that it had a minimal effect after being on a biologic for some time. She also explained that taking the little yellow pill was increasing my risk for cancer. Holy shit! Cancer! I didn’t want that. Still, I had this uneasy feeling about messing with the cocktail of medications that taken so long to get just right. I was actually visibly worried, as she told me I looked concerned and repeatedly reassured me that this was the right move. As I think back to that day, it just didn’t feel right. She also wanted to lower the dose of Remicade I was getting as well. There was a point where she left the room to talk with Dr. Butts about the changes she wanted to make. I couldn’t believe that they hadn’t discussed these changes before my arrival. He agreed with dropping the Azathioprine but not changing the dose of Remicade. He never bothered to come into the room and discuss any of this with me. This would be the last time I saw Laura Worst.
As I walked to my car after the appointment, I had a mix of emotions. I was excited that my health had improved so much that I could stop taking medications with potentially harmful side effects. I was also worried about the future. It just fundamentally didn’t make sense to me. Why stop taking the drugs that had put me in such a good place physically? The next morning I didn’t take the little yellow tablet that had been part of my routine for so many years. If I’m honest, it was incredibly liberating.
A few months passed before I started to see the blood in my stool. Enough time that I had all but forgotten about all my fears of stopping the Azathioprine. I initially brushed it off as I had in the past. I had slipped with my diet and figured that that was the culprit. I focused on eating better food and eliminating alcohol.
Unfortunately, my health continued to decline. My bowel movements became looser and more frequent, and I finally had to sack up and call the GI nurse line. I told them how I was feeling, and they relayed the information to Dr. Butts… Or Laura Worst. I’m honestly not sure. It was always a game of telephone where the nurse was the intermediary between the doctor and me.
Lab work was done that revealed significant inflammation. I was prescribed budesonide and told to let them know how I felt in a few weeks. No mention of the change in treatment potentially being the issue.
Those weeks passed without any improvement. I again called the nurse, and it was relayed back to me that Dr. Butts wanted to do a colonoscopy and take a look inside. No mention of the change in medications.
It took a few months to get the colonoscopy. Doctors need their vacations, too, I guess. Although I will admit, it was suggested another doctor do the colonoscopy sooner, but I wanted to see MY doctor. After the procedure, as groggy as I was, I vividly remember Dr. Butts telling me, “It looks pretty bad in there.” I was prescribed Prednisone this time and told to check back in in a few weeks. No mention of the change in medication.
My health continued to decline at an alarming rate. I was having accidents, and it was hard for me to leave the vicinity of a bathroom. Every time I called the GI nurse line, it was the same song and dance. There would be a game of telephone, and they would increase the dose of Prednisone until the day they told me it was time to go to the emergency room (holy shit, was that a fiasco). Never once did Dr. Butts or Laura Worst pick up the phone and call me themselves. Never once did they suggest re-prescribing Azathioprine.
Once I was admitted to the hospital, I was treated by the attending GI doctor; let’s call him Dr. Hope. He seemed to genuinely want to fix me, and it never felt like he was rushing through a conversation. In fact, when he came into my room, he would sit down and make himself comfortable. Most of the doctors I dealt with had one foot out the door after two minutes. His bedside manner and the time he took to discuss options with me built a lot of trust. We came up with a treatment plan that involved a diversion ostomy to allow my colon time to heal. Once the surgery was complete, he suggested a new biologic along with, you guessed it, Azathioprine.
Now, I was still technically under the care of Dr. Butts. It was expected that after I was discharged from the hospital, I would continue to work with him. That all changed for me after a visit in the hospital one night. I had been there for over a week at that point, and I had not yet heard anything from him. He came into my room with an energy I can only describe as uninterested. He explained to me that after the diversion surgery, my colon would need to be removed. He said it was beyond repair. How could a doctor who had JUST looked inside my colon have so much hope and another so little? Furthermore, how could the treatment plans be so drastically different? I decided that night I was done with this guy.
Golly, this has gotten long. Are you still reading? Let’s wrap things up.
After I got out of the hospital, I changed my primary GI doctor to Dr. Hope. Something the health network made way more complicated than it needed to be. But I digress…
I’m now doing well. I still have the diversion ostomy, and we’re working on healing a stubborn fistula. However, my life is significantly better than it was a year ago. I feel like my doctor listens to my concerns and is genuinely trying to get me back to feeling “great.”
Still, some nights I lie awake at night fuming over Laura Worst and Dr. Butt’s decision to change my treatment plan and set off this avalanche of horrible events. I actually brought this up with my new GI doctor. He wasn’t willing to all-out throw his peers under the bus, but he also made it clear that he also did not understand their decision to alter my treatment. I hate that I never confronted either of them about this decision and that I never got to hear them defend it. Maybe it was the right decision. Perhaps the onus was on me to be more vocal about my concerns. I know in the future I will be.
What do you think? Did the doctor make a mistake? Let me know in the comments section.