When There are Few Options

Hello from my study,

Thank you to the many people who reached out this past 24-36 hours to let me know you were thinking of me. The MRI yesterday went as well as it could. Getting an IV into me is always an adventure, but they made it with only needing to stick me three times (there have been up to eight times). Ever since they took so much of my digestive tract out, the issue of hydration, and consequently, IVs have been a difficulty. I used to warn them, but now I just see what will happen.

There are times I wonder what it would be like to have a normal body (and I know that is a loaded or difficult phrase in and of itself). It has been so long since I had a complete digestive system that I do not really remember what that is like. One of the things I continue to realize is just exactly how much my life can be affected by this tube that runs through the center of our upper body. Too often we merely see it as simply that: a tube that starts with our mouth and ends with our anus. However this alimentary canal is quite the complex group of organs. It is a system of hollow and solid parts that do everything needed to provide nutrients. Working together, nerves, hormones, bacteria, blood, and the various organs of your digestive system convert what we put into our mouths into what our entire body needs to function. In spite of all the work I have had done to me, it was not until the last year that I learned that the only thing your brain uses to function is carbs. It is true, and that shocked me. The other thing that has astounded me through the years about the intestine is that they are so pliable. They are soft and when you touch them, you paralyze them or more accurately, you disrupt their peristalsis (the movement that helps the food move through the various parts of the system). The second thing that still stuns me is how they can manage the incredible acidic elements of digestion (enzymes and bile primarily) and not be hurt, but when this same digestive liquid comes into contact with the skin, it will burn it. That burn is much like a really bad sunburn or worse. Again, I have learned that by experience. When you smell food, your brain sends a signal to your system and it is already moving into action to help you manage what it is you will put in your mouth. Enough for your anatomy lesson for the day. Suffice it to say, there is so much more that is happening than merely a tube.

What it interesting for me is how taking out significant parts of this tube has both allowed me to continue living with more than a modicum of existence, while simultaneously creating a host of new issues, most that I had not an inkling of knowing what would happen. Hydration, simple (which is a misnomer here) digestion, and nutrition have all changed. When I think about all they have been able to do and the ability of the body to accommodate, I can do little less than marvel at the resilience of the mechanism we call our body. While we too often only see what it has (or doesn’t) in terms of image, there is so much more about the beauty of what we have. I think medical professionals have to be astounded both awestruck and confounded by what this collection of bones, organs, and systems does. Sometimes, I am not sure if my obsession with my modified body is because I am getting old and it forces me to pay attention or if it is because it is merely that it is so unique. I do know that a recent conversation with two incredibly talented gastroenterologists created some new options, and their response to my story, my life-long battle with some form of an IBD, was one of both profound interest and even a bit of shock. I remember once writing in a paper, “I have been held up as a poster child for managing a disease with profound complications as well as called a wimp by an ex-spouse” (IBD Paper, 2010).

In one of my more “keeping-it-real” moments, I remember telling another, they do not call doctors practicing-physicians for no reason. One of the most incredible realizations for me is how we continue to make strides in treating our bodies. From simple procedures to the complex, from repairing to rebuilding, from learning to innovating, what doctors and others do to keep us not just alive, but thriving and moving forward is honestly miraculous. I know that had I been born even a generation sooner, I would probably not have survived all the various maladies that seemed to plague my adult life; or the quality of life would have been so horrendous that purely existing would have been the order of the day. I have certainly been able to do more than that.

In the three days that have passed since beginning this, I have additional news. First, I want to thank my hepatologist/gastroenterologist for getting back to me so soon. The good news is my gallbladder seems to be in reasonable shape, meaning no surgery needed. That is an important thing because abdominal surgery for me is incredibly complicated because of the multiple surgeries that have already occurred. The liver has some very significant issues; however a game plan to manage that is being implemented.

So, while on one level there are not a lot of options, at least there are pathways to attempting to reverse the damaged liver. The damage is the consequence of long-term prescription steroid usage for Crohn’s. If I am to be totally honest with myself, alcohol use in my early twenties and for a period in the 90s probably did not help. It is stunning how little we consider the long-term consequence of what we do, especially when it comes to our bodies. While I am struggling to lose another 20 pounds, I have already managed to lose 30 in the past 12 months. I was the person who could not keep weight on until I was 40 or so. I remember when I got to a 34 inch waist how mortified I was. I am back to a 36. Another 20 pounds will probably have me back to a 34, perhaps smaller. Earlier this week I sat in Starbucks merely watching students. I was sitting in the chair and watching and listening. Their conversations are almost comical, struggling with why someone would make them read so much, or requiring them to come to class. I thought that is what college was, at least in part. I listened to their dismay about the latest snap exchange or their struggle with who said what to whom. Oh the drama. I watched as the amount of sugar they put into their coffee, their lattes, and their frappes, which are 4 parts sugar already, pushed my A1C a point higher my mere observation. Extra Metformin for the day needed . . . and that says little about the fact that most of them seem to pay little attention to how that sugar, poor eating, and lack of general nutrition affects their ability to excel at their studies or what it is doing to their life-long health issues. If I were to elaborate, I would probably be accused of discriminating, so I will stop.

Certainly, there are always options in how we respond, but sometimes, there are few good options, and even those are no guarantee. That is what I am presently feeling, at least some of the time. I am feeling the need to step back and regroup on a number of fronts, and that plan is being figured out. The first plan is to manage this latest health dilemma, but I have a meeting with the nutritionist this week. The managing of school and life for the remainder of the semester is also high on that list of “must-dos.” There are options, but few that make sense if I am to be successful. Yet, I have them. I tell my students the secret to this is not a secret. It is prioritizing and then having the discipline to do it. It is not rocket science. Logically it is not difficult to understand. It is using the discipline necessary to reach the goal. Well, off to do it.

Thanks as always for reading.

Dr. Martin