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

 

 

 

 

Understanding the Puzzle (aka: My Body

Hello from my study,

Somehow when I deleted what I thought was a draft (it said local on it) of the last blog I posted before bed last night, it seems I deleted what I had actually written, so here we go again. I will still post it as a St. Patrick’s Day post, but it is a bit after honestly. This past week was Spring Break, though it had a more oxymoronic flavor to it, or a Houghton/Hancock appearance to it. This past Tuesday we received the most snow they have had in Bloomsburg during a single snowfall in decades. On the patio between my house and my barn/garage, I measured about 26 inches of snow and it was still snowing for a few more hours. I am not sure of the final total, but I think 28 inches is pretty accurate, at least in my yard. I am looking out now and it is snowing steadily again, just in time for students to think about driving back from wherever they spent their breaks. My Spring Break this year was substantively different that last year’s break, which was spent in Ireland. Howver, I knew that going in because of the medical incident that occurred in December. Yet, I would like to offer somewhat of a shout out to those I met in Ireland last March.What a wonderful 5 days that was. The food was phenomenal (and those of you who know me, know I can be coerced by amazing culinary items anytime.). The people are genuinely wonderful and accommodating. Finally, the greens in Ireland are certainly unrivaled by most any place I have ever visited. Siting in a bar the last night working on a paper about the rhetoric of place, drinking a pint of Murphy’s, and meeting two college students from my hometown of Sioux City was quite the irony, but it made the trip all that more special. So the picture above is of an Aer Lingus plane, the national airline of Ireland.

Back in December, as many know, I went into Urgent Care one morning after a week-long virus, but with some chest pains. What ended up happening that day was an Acute Kidney Incident (AKI) as it is categorized, when my kidneys decided they wanted a break. What I did not know, but perhaps should have surmised because of a doctor’s question (if your heart stops can we resuscitate?) was I also was suffering a cardiac issue. What I found out is my heart rate was under 50, which is something called bradycardia or bradyarrymthia. It seems that some of the reason for that, in my case, is probably again Crohn’s related. Because of some complexities in my altered GI track, there are likely conditions that can slow electrical impulses through the heart. When I was in the hospital that day it was probably an issue of both electrolytes and too much potassium in my system. In addition, it seems after a two-hour neurology appointment on this past Wednesday, that somehow the Crohn’s, and consistent subsequent removal of more and more of my gastrointestinal track, continues to have consequences. The area of the ileum that absorbs B complex vitamins, something I no longer possess, has created a malabsorption of said vitamins to be low to the point of being a serious problem, thereby vexing my remodeled insides in a notably  malevolent manner. Some of the consequences of bradycardia could cause me to:

  • Feel dizzy or light-headed.
  • Feel short of breath and find it harder to exercise
  • Feel tired.
  • Have chest pain or a feeling that your heart is pounding or fluttering (palpitations).
  • Feel confused or have trouble concentrating.
  • Faint, if a slow heart rate causes a drop in blood pressure

While I have had all of these things and more often than I realized, none of them seemed so severe to cause alarm. Together, however, when I see them in a list, I am a bit more concerned. Fortunately, a neurologist, who during residency had significant experience in gastroenterology seemed to peg my unique body pretty accurately. What has happened as a result of this appointment is a follow-up with a cardiologist. It seems they might do a thirty day monitoring of my heart and they noted something called a recording loop might be implanted to do actual recordings of heart activity when some issue is taking place. All of that will be done within the next month. In fact I need to return a call on Monday to see when I will have an appointment.

On Thursday it was back to the gastro doctors and a traipsing through that tube we call the digestive system. One of the most important things I have learned is this tube is much more complex than merely something with an opening on each end. When I wrote a paper with two colleagues about managing my IBD issues, I noted that we do not talk about our digestion or elimination of waste because it is too personal and embarrassing, but for the last 30+ years I have had to consider this on a daily basis. Once more, I was told by yet another doctor that I probably have had Crohn’s my entire life, or certainly since I was a child (like during elementary school). After both an endoscopy and ileoscopy, what we expected to find in my remaining small intestine and upper GI areas was exactly what we found: no active Crohn’s. That is a blessing on one level because it is one less thing to manage, at least in terms of additional medication. What is much more evident, however, is that this disease continues to do what I accused it of in that same paper some years ago. I asked, “What happens when there is no recovery from a disease? What happens when this disease [seems] to steal me from myself? How do I get myself back” (Martin 2010)? While I am not adverse to  the tests for Crohn’s any longer, as they have become commonplace, I do have some issues with the disease itself. As I was reminded, we still have little idea how or why someone is afflicted. We know it affects the immune system and I have struggled in a profound way with a compromised immune system. The issue of hydration and absorption of B complex vitamins seems to be the current over-riding concern at this point. I guess the vitamin is called complex because it is. It affects the heart, the nerves, the brain, and the list could go on. Here is a quick list I found searching the web.

  • B1 and B2 are important for healthy functioning of the muscles, nerves, and heart. B1 helps the body make new cells and B2 is important for red blood cell production and fighting free radicals
  • B3 helps regulate the nervous and digestive systems and helps convert food into energy
  • B5 breaks down fats and carbohydrates for energy and is responsible for the production of hormones. B5 and B12 are required for normal growth and development
  • B6 supports the immune system, helps the body produce hormones, and aids the body in breaking down protein
  • B7 is involved in the production of hormones
  • B9 helps cells make and maintain DNA and promotes the growth of red blood cells
  • B12 helps regulate the nervous system and plays a role in red blood cell formation
  • B6, B9, and B12 help to regulate levels of the amino acid homocysteine (an amino acid thought to contribute to heart disease when it occurs at elevated levels) (B Complex Vitamins)

Not sure I hoped to be a medical or vitamin handbook here, but the complexity of this one group of vitamins is staggering, both literally and figuratively. It seems there are two consequences that I will have to manage. Hydration, which is a constant problem, is going to be treated by taking of medication to slow down motility. Second, it seems I might be looking at B Complex Vitamin shots. This has always been on the table, but I did not realize that I was in such dire straits concerning all of this. Many of the symptoms I have been dealing with I wrote off to being 60-something. It seems that there is more going on.

Yesterday I also made it to the chiropractor again. The muscle tightness in my lower back and my butt (and I do mean serious maximus) as well as my neck and shoulders was palpable in many and various ways. So for me, Spring Break has been a week of introspection and working to understand how my altered body, one with which I have had a sort of love/hate relationship for 30+ years, is still amazing and resilient. I have been called superman more than once, but I do not feel all that super or amazing. It is what I have to work with. It is not something that I might have predicted, and certainly not something I would wish on anyone else. I remember being told I was a wimp once upon a time. My response in that instance was along the lines of I do not know what it is like to be on your side, and I am sorry for that, but I would not wish my side on anyone. I still feel that way. What amazes me in the past week, though I intuitively knew already, was how every little thing in the body affects and is related to something else. When I was a senior in college, I took and A&P class as med students call it for something to do. I might have been one of my smartest decision ever because I learned more valuable information in that class than perhaps any I have taken. It worked, not only when I was a pastor, but also now for myself. Some have asked why I am not more upset or why I do not seem to feel sorry for myself. There are moments, I promise you, but what being chronically affected by something has taught me is there are always challenges. Sometimes, to use the metaphor of the puzzle, it seems I am trying to put the puzzle together, except all the pieces are turned over or upside-down. I see only the shape, but they are all cardboard grey or brown. What the appointments this past week have done is to turn the pieces over . . . to give me a clearer glimpse of what the puzzle’s entire picture might be. It is never easy when your life is controlled by something you wish you did not have, but I do not feel badly because of the hand I have been dealt. I have a wonderful life. I am better than most because I have a job and insurance (which might be even more amazing considering the news this past week, but I will not go there more than I have by this comment already). I am fortunate because this week, once again, I have been afforded outstanding care by exceptionally intelligent people. I have had colleagues reach out and provide rides and neighbors ask if I was okay. There is so much we take for granted, and even in my compromised state, I am no different. What I do know is that many of the things I am dealing with on a daily basis are more serious than I might have anticipated. Perhaps that is because I have struggled for so long, but I do not see it as a struggle. Everyday we are offered a chance to get up and work at it again. I have a wonderful job and superb colleagues. I get to go in and do something I enjoy everyday. I know that puts me in the minority.
Last year I was reflecting on my Irish heritage and as I was writing this initially yesterday, it was time to do so again, but I do it more often than just the 17th of March, the day we specifically note those from the Emerald Isle. Our heritage is something more than place, it is identity. It is what connects us with our past, but hopefully points us to a future that could be better than from where we have come. It is interesting to me how place comes back into my psyche so often. Is that because I was adopted or something more? I am going to close with the same video I put in the first time. Before I close, however, I wanted to note how astonished I am by people and how our lives seem to work. Recently a person has re-entered my life, most unexpectedly, but also most wonderfully. How do you catch up on decades when the baggage is great and lives imagined are certainly not what occurred? It is fun to share with no expectations and with st least some sense of common history, albeit long ago and far away. Thank you for returning.

 

I am blessed and I hope you find reading this somehow both informative and a blessing. In my most native of languages, at least from what I can figure out, Sláinte!

Thank you as always for reading and Happy St. Patricks Day

Michael