If I had Known . . .

Good morning from my office,

As a way to catch most up concerning the outcomes of appointments and tests, I think I will offer information here. Thank you, first of all, to all who have inquired about the continuing issues of managing the Crohn’s and its consequences. I have been to more doctors’ appointments (yes, the plural is accurate in both cases) and there are more doctors’ appointments yet on the horizon (again accuracy in the plurals a second time). The easiest way to explain everything that seems to be sort of crashing in upon me at the same time is this. First, the removal of a large intestine in 1986 and 30 plus years of not having the main water absorption organ in my body has caught up with me. Second, the removal of the J-Pouch, which was created after the colectomy, which was a significant portion of my ileum, a part of your small intestine, as a consequence of that surgery never really working, has created a different absorption problem, that being primarily B complex vitamins. Together, both the combination of these issues and their cumulative effect on my body (and that includes extensive parts of my body (e.g. organs, blood supply, nervous system . . . you get the picture)) had me in much more dire straits than I realized. Fortunately between my CPC, a phenomenal neurologist, an outstanding gastroenterologist, and some thoughtful nurses and PAs in December, I might have the best chance to be honestly healthy I have been since the beginning of all the surgeries over 30 years ago.

So what have they done, or are they doing? As of yesterday, I am getting B complex vitamin shots on a daily basis for two weeks. Then I will go to once a month for the rest of my life. My last blog gives some idea of why this is so important. Second, I have another test (MRI) of my mid small intestine coming next week to make sure that the Crohn’s is not currently active. Third, I am meeting with a GI nutritionist to see what is the best way for me to get some other vitamins and minerals into my under-absorbing body. I could go back to the U.P, steal copper and chew on it, but I am not sure that is a good plan. I am now taking 50,000 units of Vitamin D a month, Folic Acid, a statin, and aspirin daily to manage the other issues that have been deemed problematic because of this absorption, or lack thereof, issue. The shots are not difficult (I got one last night and another this morning). Taking pills is not one of my favorite things, but again, it is not that difficult. There are two issues to which I need to attend once again. I need to lose 30 pounds (and 40 would be better), and I need to get my blood pressure back down. It is once again up above where it should be. Some good news included the levels that point to kidney issues, which popped up in December for the first time, seem to be back to normal. The next, new, issue is a cardiac issue. It appears my heart is beating too slowly and that too seems related to the B complex vitamin issues, which is again related to surgeries because of the Crohn’s. It seems my body is adverse to absorbing most everything, which causes me to wonder how it is I need to lose weight. How can it be I have gained weight when I cannot absorb, but then again lack of energy and an increased amount of sleep might be the culprit. Seems a logical question, without a logical answer beyond what I have just offered. Yet that has often been the case with the somewhat  normal, and profoundly abnormal, way I have been required to manage my modified digestive system. As I noted in my last post, there has been little that seems I can do to change what my body will or will not do. I should probably be astounded that I have made it as far as I have.

What I sometimes wonder is what if they had diagnosed me with Crohn’s in elementary school, when they believe I probably contracted, though I am not sure one contracts it; of course, there is the doctor who told me I was probably born with it. In some ways I would be more comfortable with that as my reality. If one has it from birth, it just is. One can still question the why, but as I have learned, there is still much that is not known about Inflammatory Bowel Diseases (IBDs) and their causes. Immune issues seem to come up the most often. Of course, there is a question about what treatments might have been available to me (or more accurately for me because it would have been my parents’ job to help me manage something). I do wonder, again as I have noted, what it would be like if they had been able to keep my body intact. That seems to be the most significant or problematic topic or puzzle (we’re  back to that) currently. Yesterday, I had three doctors call and it was actually very satisfying to tell the neurologist that his appointment time and conversation with me might have been the best two hours I had ever spent in front of a medical professional. The care, detail, and willingness to answer and explain was like nothing I had ever experienced. For the first time in over thirty years, I believe I have a clear sense of how all the parts of the body interact and why the surgeries that I have endured were not the end of the story. Logically, I knew that, but I am not sure I have ever really considered what might happen. “It astounds me as I write to realize how much of my life is controlled by this 4×4 wafer and 10” pouch. The struggle to be seen as more than someone with a serious illness confronts me emotionally more than most know” (Martin 2011). When I wrote these words I was still coming to terms with my personal struggle. I also wrote, “So what is my identity? Who am I? I am a [61] year old male who was born prematurely and that early arrival had consequences; it might have more of which I am not even aware of at this point” (Martin 2011). This is surely the case as I spent almost 20 minutes placing doctors, nurses, and other specialist appointments into my calendar last night. It is surely the case when the majority of phone calls received today were from scheduling people at Geisinger (I think I had 5 calls today). The consequences are currently daily trips to the doctor’s office for injections, taking more medications, and wondering how to manage an HSA that seems to ask for more documentation that ever, all under the guise of blaming the IRS. When I was working on my comprehensive exams, one of the books I read was an astounding book by Arthur Frank, titled The Wounded Storyteller. There are moments I feel that is what my blog has become as of recently. I am able to accept the reality that I am affected and wounded by the fact that I am missing more intestine than I have left. “It is in that wounding I am reminded that I am still capable, or more accurately that I can still fight this with all my might. It is in suffering that I know that I am present  . . .  I am a person with an insidious and chronic disease. It is fighting to control me,  but differently from times earlier in my life, where I let it control me, now I refuse. It is taking more time than I wish, but for the moment I will give it its due, but I am coming back. I believe through these injections and managing motility, I will once again beat it back.

I am pretty sure that it is best that I did not know where all of this would lead because I am not sure I was strong enough earlier in my life to stand strong. As I noted once again in that paper, the role of telling all of this is a sort of testimony and the role of being able to tell a story, particularly a story of illness does allow  one to suffer, not in loneliness, but in a pedagogical way, a teaching way. Perhaps that is not surprising because I am both a storyteller (ask my students) and I am a teacher, but not a memorization person. I am one that pushes people to analyze and think about their situation. I am a firm believer we are all teachers in our own way, just like ministry can occur in many places outside the Sunday sanctuary. When we use a negative experience pedagogically, we are not allowed to wallow in sadness, but we are managing reality forthrightly and honestly. The narrative, the story, changes. This narrative as noted by another author on the chaos of illness speaks about a narrative of restitution. Restitution is paying back for what which has happened. Certainly, the trail of what has happened between my partner-in-life, Crohn’s and me is long. It has been an epic battle and the battling continues. Earlier in my life, the narrative was of embarrassment and rejection. I refuse to allow such a narrative to take hold of me ever again. It is ironic that I continue to address my personal, and intensively private, intestines in such a public place, but again, it is what I teach. How do we use computer mediated communication or our own social identity to come to terms with our personage? It is through this writing that I begin once again to make sense of what is a chaotic body-self dualism. The first time I struggled with the consequences of surgery in a most public way, someone who should have been supportive was incapable of doing so. I did not understand. In my frailty, I could not understand their reaction. What felt like rejection when I needed acceptance perhaps more than ever before was profoundly injurious, but that injury was not as readily apparent as my altered self. However, before I am too hard on the other, it is important for me to realize I could not accept myself at that point. Part of that was how weakened I was from fighting Crohn’s when it was decimating my body. At this point, it is not the Crohn’s, but the consequences of it. While some might not see a difference, I do. If both were problems at the present time, I think this would be exponentially more difficult.

So if I knew what 30+ years would have offered would it have been easier? No way . . . I can say with even more certainty that I do not believe I would have been strong enough to endure it, knowing it ahead of time. What I know even now in the throes of more issues that I still believe this is manageable. This is another battle . . . it is a war, and at some point, I even know I will lose, but I am okay with that. I am just not ready to lose yet. In fact, I am still making plans and putting plans into motion that will affect the next three or four years. In other words, I do not plan to allow these latest struggles to derail the desideratum I am working hard to create. There is much more I could write, but I think it is time to get to the work that is insistently calling for my attention. I would like to give a shout out of thanks to my friend for listening to so much of this story and much more this past week. You have inspired me to hang in there and keep trucking along. Generally, I am able to do this pretty well on my own, but it has been nice to share and for the gift of your insight. I offer this song on your behalf. Well back to Hobbit-land! 🙂

To the rest of you, thank you as always for reading.

Michael