“Mr. Wahr, Mr. Wahr? Do you know what’s happening?” the young med student who just woke me at 4:00 A.M. asked me.
“I think so,” I replied. I had come in to the University of Michigan Hospital less than 24 hours earlier with abdominal pains that didn’t feel like a normal Crohn’s attack. Something was off so after much hemming and hawing I finally decided that given my heart history I really couldn’t take the chance that something was really wrong. Especially since the pains had started the day before and weren’t lessening as was the usual pattern with my Crohn’s, “but why don’t you tell me.”
She looked at me with sympathetic eyes and said, “you’re going in for emergency surgery. A surgeon will be in shortly to explain.” Surgery? I had certainly anticipated this. In the Emergency Department they had determined that I had what they called a “micro fissure” of the fistula in my ileum. But, at least at that time, they didn’t think I needed surgery within 12 hours. So I had been moved to a room for observation.
Almost as soon as she finished her sentence a young man appeared at my bedside – why are all doctors so young now? – in a polite, but firm tone he said, “Mr. Wahr, I’m sorry but you need to sign some forms to authorize surgery. Here, here, and here.”
“Surgery?” I asked.
“Yes, we can’t get your fever under control. Our only choice is to go in and remove the cause of the infection. Otherwise your prognosis…we’ll it isn’t good,” he said in a quiet, somber tone. I understood what he was telling me and started signing the forms.
“I need to tell you of all the possibilities of having this surgery,” and he listed off the usual complications and issues and then added, “and you may end up with a stoma.” By this time another surgeon had joined the growing group at my bedside. She seemed to be in charge.
“May end up with a stoma?” I asked, “how likely is that?” The new surgeon answered, ” well, we never go in planning to create a stoma, but until we go in I can’t say for sure. They’s be coming to move you to surgery in a few minutes.”
The doctors disappeared and my nurse appeared to start prepping me for moving to pre-op. As she moved my IV bags the transport team came in. “We’re going to take you down to surgery now,” the nurse said. I grabbed my phone and sent a quick text to my brother. If something happened during surgery, I wanted someone in my family to know what happened while they slept.
In pre-op I was greeted by even more medical staff. One of the anesthesiologists started to ask me a slew of questions, a woman who identified herself as a nurse held my hand and spoke to me in a comforting manner, then I heard doors open, multiple footsteps and could feel the group around me stiffen a little.
“Mr. Wahr, I’m the faculty surgeon overseeing your operation. Here’s what’s happening. The fissure you have is worse than we thought. The contents of your bowels are emptying into your abdominal cavity, causing infection. If we don’t go in and stop this, we won’t be able to bring the infection under control. The outcome will not be positive. Do you understand?” I nodded that I did. “We’ll remove the damaged areas of your intestine and when you wake up you will have a stoma. Do you know what this is?”
“Yes,” I replied, “but it sounds better than the alternative.”
“It is,” the surgeon replied. “You’ll be going into surgery now.” And with that they began to wheel me to the operating room. I noticed the time on a clock. It was not even 5:00 A.M. They were not wasting any time which told me all I needed to know about the seriousness of my situation.
A quick trip down the hall, during which I mostly observed the ceiling, and we were in the operating room. A white, sterile looking space filled with equipment and a woman sitting in the corner covered with a blanket around her shoulders. Part of the anesthesiology team perhaps? I’ll never know. A quick transfer from my bed to the “table” and the voice of the anesthesiologists who spoke to me earlier. “Are we ready? Okay, here we go.” A mask was put on my face and just as I was wondering if this was it and would I ever wake up, everything went black.
Next thing I knew, I heard a disembodied voice asking me questions, “Mr. Wahr, can you tell me where you are?”
“U of M Hospital, I’m having surgery.”
“Very good, everything went well. You’re going to a room now.”
I continued to drift in and out of consciousness for an unknown amount of time. It was about 10:00 A.M. when I finally seemed to actually wake up. I said a silent prayer thanking God for letting me wake up and yet another doctor came into my room. This, I would later learn, was the “attending” doctor for the intensive care unit I was in.
“Mr. Wahr? How are you doing?” he asked.
“I guess fine. Considering.”
“Yes, I understand. The good news is that the surgery went well. You do have a stoma, but the infection and fever are gone and you should make a full recovery. You were lucky,” he paused to consider his words carefully, “this was the kind of thing that people die from.”
“So I hear.”
He went on to tell me a little more about the surgery and that the surgeon would be in later to check on me (as he did each day I was at the hospital). He then left me with the nurse so I could settle in.
Thus begins my newest adventure with Crohn’s. In a way I always suspected that this day was in my future – yet it was still a surprise when it happened. Many Crohn’s patients end up in surgery and with stomas. I’ve managed to avoid it for more than 30 years so in that sense I’ve been fortunate. And there is the possibility that in 6 months or so, presuming that the Crohn’s is under control, that I could be “hooked back up” so that my colon can be useful again. So, all in all, I’m handling the situation pretty well.
My current concerns while I recuperate and adjust to life with an appliance attached to my side (which does get changed every three to four days): 1) dehydration – most of the water for the body is absorbed by the colon. It will take time for my small intestine to realize it needs to pick up the slack; 2) weight loss – even though my appetite is good, food is still passing through my intestine too quickly. As a result, I’ve been slowly losing weight (almost a pound a day). Something a lot of folks dream of, but be careful what you wish for. When I was first diagnosed with Crohn’s I dropped down to about 140 pounds from my then previous weight of 180 pounds before being stabilized. I sure don’t want to be that thin again. Plus, all the weight seems to be disappearing from my chest and shoulders and thighs. Not my belly where I really don’t need it. Muscle loss is certain at this point. There goes the last 30 years of training down the drain; 3) infection, which I’ve avoided so far, always a risk after surgery but especially for someone with a weakened immune system; 4) controlling the Crohn’s. My past medical regimen didn’t prevent the fissure which is an indication that the treatments weren’t working. The interesting thing now is that my Crohn’s has historically been localized to the ileum. Now that my ileum, about a meter’s worth of small intestine, is gone the question is will my Crohn’s flare up somewhere else?
That’s it in a nutshell. I’m managing to deal with the appliance pretty well so far with only a couple mishaps (one in the doctor’s office) and I’m looking forward to returning to work soon.
Of course, I’ll keep blogging about my experience in the hopes of helping someone else with the same or similar situation. There’s always hope folks and we are all in this together.
On a side note, I had an interesting experience that was repeated with three nurses as they prepared to give me an injection in the back of my arm. It went something like this:
“Left or right arm?” the nurse asks.
“Doesn’t matter. Left.” I reply.
“Okay,” takes my arm to prepare the injection site. Stops and says, “oh, I’m not sure what this is. Is there a tumor in your arm? Or is that your tricep?”
“I hope it’s my tricep.”
“Yes, I guess it is. Not used to seeing a tricep like this. Very impressive.”
Now, I can’t be sure if the comment – from three different nurses – means I have an oddly shaped tricep or if they just don’t expect a relatively well developed tricep on a…ahem…mature man (though I think it’s looking pretty puny right now). I’ll go with the latter as it makes me feel better about myself. You have to look for the positive in every situation after all.