All it took was guts?

“A 51-year-old male had a two year course of ulcerative colitis unresponsive to medical therapy. Despite steroids, metronidazole and 6-mercaptopurine, the patient suffered exacerbations with 14-16 bloody bowel movements per day and progression from left sided to pancolitis. The patient was positioned for total colectomy and J-pouch.”

Positioned indeed. That is not me pictured. I was only forty four when I found myself in this situation in the Spring of 1999. The memories are a little vague, not from age but due to the stunted condition of my memory at the time they were formed. Extremely malnourished, I’d dropped from 186 lbs. to 143 lbs. in just a couple months. Not enough meat on my buttocks to keep me from sliding through the toilet ring. I do recall months of trials with various diets and drugs. I recall the Dr. who initially told me (early on) that “The worst case scenario is you’ll lose your colon”. But I only saw him once or twice. During the same interview he asked,

“Have you been tested for HIV? Is there any possibility that you have ever been exposed?”

“Well….no……and um….I suppose it’s not impossible.”

It was another doctor who told me the results. Dr. Holtzapple. Old Dr. Holtzapple. Shortly into my only appointment with him, my week of worry needed to end.

“What about the HIV test?”

“The HIV test was negative.”

I broke down, thanking God mostly that I had not ignorantly harmed anyone else, because by then I was sure that my own death was fairly imminent. Dr. Holtzapple then put his hand on my shoulder, and I drew in a deep breath. I’d never felt anything like it.

Within a week I was hospitalized, then in and out of hospitals for a few weeks, all the while failing, fed through veins, losing weight. Eventually spent a straight month in the hospital with no food passing my lips. All of the medications our dear pictured man had and more. Scans galore. Various gastroenterologists took turns making grim vs happy diagnoses/prognoses, the cheeriest of them being “Very disappointed” when endoscopy disproved what his belly kneading had told him. It was time to consider surgery, and a surgeon was shortly dispatched to my bedside. Dr. Simon seemed decidedly non arrogant. He was confident though.

“So Mike, do you want to keep your colon, or do you want me to take it?”

“Uh….I think I’d like to keep it.”

“Well, we really need to consider the facts. You’ve been here for five weeks on TPN and you’ve gained no ground. Maybe you’ve lost a little. I really think you should let me take it.”

“Okay. When?”

“Tuesday. I’ve got a Bar Mitzvah to go to this weekend.”

“Well…be careful…I need you.”

“Don’t worry, I won’t get drunk.”

With only the vaguest idea of what I’d consented to I questioned the nursing staff over the weekend.

“Where are they going to cut?”

“Oh, it will probably be a midline incision.”

Tuesday came and went, eight hours in the OR, (see the 50 photo sequence of our man above as he continues his journey…not for the squeamish) and eventually, over a continually horrifying two years (ostomy take-down, fistula surgeries), I got better. Had a chance to tell Dr. Holtzapple about his healing touch. Had a chance to thank Dr. Simon for saving my life. Had the chance to ponder my confession to Fr. Castronovo, and his visit with the relic of a saint whose name I can’t recall. Rode the bicycle hard over sixteen miles of hill country yesterday. Too tired tonight to do anything but blog.

2 responses to this post.

  1. On the day you posted this I became embroiled in one of those twenty-first century situations sent to try old people. VR and I are both going deaf (VR somewhat worse than me) and we have difficulty following dialogue in US movies over the telly. We wondered if linking up the TV sound output to our hi-fi radio/audio system might help, bypassing the telly’s pathetic loudpseakers. This involved buying a new receiver-amp capable of speaking to the telly via an optical cable. Should have been simple, in effect no more than swapping the old receiver-amp for the new. Except that it seems LAN networks (wired or wireless, take your pick) may or may not be involved, the instruction manual is vestigial and info is conveyed from the strangely uninformative receiver-amp (push-buttons relating to completely new and totally obscure fields of endeavour) via the telly screen, and so on and so on. Dinner loomed and VR had to postpone cooking already embarked on.

    And now I’m getting to the point which explains why I started this comment the way I did. Old age and stress don’t mix and I was stressed. At one point I felt despair which is shameful giving the basic triviality of the project. Except that in reading your post this morning I felt I was doing so under the shadow of despair. Not that your account was in any way despairing, your detachment was admirable, professional even. Just that your dreadful tribulations were in some way re-invoking my earlier despair but in another light. Those stark details and their unflinching honesty were not just about illness but about a personality taken to the brink; I sense you being humiliated by these experiences and finding that as hard to take as the pain, the discomfort and the uncertainty. Yet somehow managing not to succumb.

    OK, there’s a happy ending and I – alas selfishly – am relieved. As with my self-regarding reaction to your news about the Russian Hamlet, I went back through our dialogues over the years, wondering whether I’d been over-robust at times you were suffering. Of course I wasn’t to know but time goes to pot under such circumstances and unjustified regret is still regret. Needless to say this back-trawling proved inconclusive.

    I could say that when given a heroic subject your writing abilities rise magnificently. But is that enough? My mother died of ulcerative colitis plus crippling emphysema but I was in the USA at the time, facing employment problems and I could only cry like a baby at the news. I suspect you didn’t cry during any of this. Many years later I wrote a sonnet and two lines – quite indirect of the main subject – seemed to work. You’ve done rather better. All your lines work. Some day you will recognise how this suffering changed you, it needn’t necessarily be for the better (Why should it?) but truth usually turns out to have a value somewhere, somehow.

    In the meantime we go to bed and – if we’re lucky – we wake up feeling slightly more confident. But confidence is a consumable and it’s usually dead and gone as we crawl back into bed. Recognising this is a minor truth and may help. Thanks for the post. Thanks for surviving.


  2. Worry not, dear friend. My ordeals resulting from this illness were long subsided by the time our cyber-paths crossed. All dietary caution has long since been thrown to the wind, and a hearty dose of babaganoush, hummus and a very hopped up IPA last night only caused me brief discomfort. Interestingly (still, to me) I only received a “definitive” diagnosis post surgically, and that diagnosis was Crohn’s disease. I was informed by the surgeon one day post op that the operation might have been a mistake but that “we’ll see how things go”. I thought that the technical aspects of the operation might interest you, but I relied on the photos to convey these complexities. The surgical tools and techniques used are amazing, particularly the stapler devised to complete a bowel anastomoses.
    I know the frustration of wired and wireless re-do’s. All of this technical advancement leaves me in awe of my fellow man, though. For a week now, since listening to a blurb on PRI, I’ve been trying to gain a carpenter’s understanding of quantum mechanics. Einstein’s “spooky action” (which rather put him off ) has now been proved, and last fall scientists finally recorded one of E’s long ago predicted gravity waves. But that’s another blog post.
    Hope you’ve got the audio sorted. I’m happy enough letting subtitles enlighten me regarding foreign utterances, including those non-Am English, teen English, and just plain bad sound.


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