Recovery and the Power of Prayer

10 days later

It’s hard to believe it’s been only 10 days since my surgery. To anyone reading this post who offered a prayer for me, thank you so much. I firmly believe that your prayers enabled me to experience a blessing of healing in the last week and a half. If you want to skip the over sharing, you can jump down to “Heading Home”.

Ten days ago I was in the PACU, prepping for surgery. Beyond the typical questions and prep, I was also given a smorgasbord of random pills whose collective intent was to coat the lining my small intestine in order to dampen the pain and promote post-op healing. These meds collectively were part of an ERAS (Enhanced Recovery After Surgery) protocol; I’m sure most procedures now have this protocol, but I was amazed at the effectiveness of the seemingly random conglomeration of meds used for GI surgery. Celebrex? Really?

Anyway, because I’m me, and I cannot move my neck, I need to get intubated before they knock me unconscious. The idea being that if they apply the general sedation and then cannot move my head to secure the airway, game over. They need to secure the airway while I’m conscious.  If that sounds bad, the reality is much worse. In preparation for getting intubated, the nurse anesthetist (CRNA) stopped by to start numbing my throat. First, she gave me a shot to dry out my mouth (I can’t even imagine the rationale for developing such a med) and then hooked me up to an inhaler with lidocaine in the bowl. Folks, it’s 2019; you’d think that they could develop a vapor med that tastes less like licking a compost pile but, alas, no.

Fortunately, after answering all-the-questions and getting an IV started, Larisa was permitted to join me. We had over an hour to kibitz, worship, and listen to a recording of breathing techniques intended to help us relax and help me heal better. All too soon, the transport service was there and I said goodbye. If you’ve never been through surgery, this is a really poignant moment. Your brain is grappling with the realization that you may only have 30 minutes of human consciousness left; this may be the last time you ever feel your wife’s hand, or look at her lovely face. Faith is real. To fear the unknown is human. Through my multiple surgeries and procedures, Larisa has learned not to say goodbye. Instead, she says, “See you soon,” because no matter what happens, it’s true. Hopefully in just a few hours, but if not, just a few short years until Heaven.

They wheeled me outside of OR 47 at 8:26AM and parked me beside a bunch of empty boxes. Literally lying beside the trash to be taken out. Cleveland Clinic needs to work on this metaphor a bit. The CRNA came out and added more compost to my inhaler. Thanks. Then my perky nurse came out, introduced herself and asked what surgery I was having. After I explained my redo, she piped up with “and you know you’re getting stents placed, right?”. Stents? What stents? To grossly paraphrase Acts 19:2 - I had not even heard that there was a stent… this is not what you want to hear immediately before surgery. When your mouth tastes like compost.

At 8:33 I was wheeled into the OR and shimmied over to the operating table. It’s bizarre because the table is so tiny they have put arm boards on the side so your arms don’t hang to the ground. There was only about an inch on either side of my hips. I’m not sure what they do when they one of the Cleveland Browns shows up for knee surgery… presumably two arm boards?

Over the next little while, my CRNA alternated between spraying lidocaine down my throat and and keeping me on the inhaler. Good times. Also, my surgeon arrived; this was cool because, during any of my prior surgeries, I don’t ever remember seeing my surgeon before the procedure. While discussing possible outcomes, my surgeon opined that I would almost certainly need a temporary ileostomy. While he was confident in his skills, he didn’t intend to let everything pass through the newly connected site unless all the conditions of the surgery were perfect. This isn’t really what I wanted to hear, or what we had discussed previously, but there isn’t really any turning back when you’re on the operating table and know that both permanent and temporary ileostomies are possible outcomes. I was also able to ask about the stents and got an answer that didn’t help much at the time. Later, I came to understand that the stents were inserted into my ureters to provide rigidity so that when the surgical team was poking around with small bowel they could feel where the other plumbing was located.

It turns out, we were waiting for the Anesthesiologist to show up. The doc was covering two cases and because of the complication of my intubation, she wanted to get the other case started first. I could tell that my surgeon was not amused by this, but he passed his time fiddling with a new machine off to my right. Somewhere in this timeframe, the CRNA administered two doses of Versed. This is a sedative that blocks short term memories from being formed. I remember asking her “So, I’m talking to you fine now, but won’t remember it later, right?” Right. Except I do. I’m guessing the adrenaline of the impending intubation negated the effect of the drug.

The Anesthesiologist finally arrived and the team huddled one last time. I asked if I could pray with them, which they graciously allowed. I hadn’t factored in the super dry mouth (that med worked!) or my now thoroughly numb tongue and throat. I’m not sure the team understood what I prayed; hopefully they got the gist. Regardless of whether they understood a word, God understood it all.

It was time to be intubated. I hate this part. They literally blindfold you and then put a bite guard in your mouth with a hole in the middle. At this point, you just hope it goes quick. It didn’t. I remember squeezing my nurse’s hand hard enough that it probably bruised. I remember three times being told to “take a deep breath” as I could feel the tube in my throat and my body fighting to stop it. This is so hard because your mind is trying to suppress every gag/fight/flight reflex while your body is, understandably, sure that it is being murdered. Finally, they must have secured the airway and, like a light switch being flipped, all memories ceased.

My next memory is in the PACU (aka recovery room). If you’ve never recovered from surgery, the only way to describe it is non-linear and random. There isn’t really a “first thought” or progression; all recollections are kind of held at the same time. My “first memory” is telling Larisa that I didn’t have an ileostomy (Yay!)... but I have memories of talking to my nurse before Larisa was called back, and also of discovering for myself that I didn’t have an ileostomy.  What is first anyway?

Woven into these memories is the slow realization that you are, still, alive on Earth. This is a mixed bag; I’m so thankful to see Larisa again, and to know that she is not dealing with the crushing grief of loss. I’m grateful that my sons do not have to deal with yet another separation. But, truth be told, it is also a little disappointing. There’s a lot of Philippians 1:23-24 happening in this moment. I don't remember this, but Larisa tells me that I asked her to pray with me. She asked if there was anything specific that I wanted her to say, and I responded, "I'm just so thankful." Later, I told Larisa that I was pretty sure that if Paul had been married, his take on Philippians 1 may have been slightly different. Not that the good Apostle would ever have put a wife above Jesus, but waking up to Larisa was an awfully good option if I can't be in Heaven.

One of the amusing, or so I’m told, consequences of all the meds I was given during surgery is that I say a bunch of funny things. Larisa says that I don’t have any filters. This isn’t exactly true: I do have filters. It’s just that all thoughts and words are inspected and given the green light. They seem like really good ideas at the time. I’m pretty sure I chatted up all the medical staff and propositioned my wife multiple times. It seemed like a good idea. Pretty soon a kind man named Paul came to transport me from the PACU up to H51, which is a colorectal floor. I’m fairly certain I mentioned something about the trip being a missionary journey. Again, it seemed like a good idea.

Heading Home

When I was hospitalized in October and December, I was fortunate enough to have a room on the H51 colorectal floor both times; being admitted through the ER is pretty much luck-of-the-draw as to where they can find a bed, and I was thankful to land on the very floor where they were so acquainted with my kind of problems. As a result of these experiences, I got to know several of the nurses really well and in the PACU requested to be transitioned to H51. Thankfully, a bed was open and I was able to return to my home away from home. I adore these nurses! They know what they signed up for, and are gracious and kind through the most disgusting and humiliating moments of life.

In the grand scheme of things, I had very little pain. This is amazing since they couldn’t finish my surgery laparoscopically and had to do an open incision to wrap things up. However, they were able to do a “block” on the pain receptors in my abdomen. Between this block and the ERAS medications they had given me pre-op, I required virtually no narcotics to deal with the pain. It was all NSAIDs and Tylenol… and something for my nerves (sensory nerves, not anxiety nerves).

One of the major concerns with surgery, especially colorectal resections, is that the general anesthetic administered during surgery stops the peristalsis in your intestines (this is the muscle action that pushes things along). Restarting peristalsis is a complete unknown - in 2009 it took me about a week to get things working properly. However, this time around my peristalsis restarted immediately, and I was moving things along within hours of regaining consciousness.

Honestly, the worst part about the recovery was having my catheter removed. My nurse aid was training a new aid. I’m pretty sure the new aid had never removed a catheter before. She was almost, but not quite, able to walk the line between caution and torture..

Prior to surgery, I was told that typical recovery time for this type of surgery would be a minimum of 5 days in the hospital. I was discharged on day three. I was expecting a lot of pain and an ileostomy. I had neither. In fact, my surgeon told me afterward that ileo-rectal redos are extremely rare, because you need almost the entire rectum to accomplish them. In spite of 3 prior surgeries, I still have all of my rectum, which is almost unheard of in this type of situation. I was expecting to burn through a lot of PTO time, but was able to start working on Tuesday, less than six days post-op. On day nine post-op I ceased all pain meds, not even needing the occasional Tylenol.

I attribute this success to two factors: excellent care, and the power of prayer. It is true that the Cleveland Clinic is amazing: from my excellent surgeon to the the ERAS protocol and pain block, and on to the nurses on H51, everything went smoothly and was optimized for a rapid recovery.

However, this is true for all their patients, and few are blessed with the speedy recovery I’ve experienced. As far as I know, there is no way to prescriptively restart peristalsis. There is no way to insure that wounds heal or infection stays at bay. There is no guarantee against a leak at the surgical site, no matter how skilled the surgeon. All these factors are dependent upon the body responding and doing what it was designed to do: the miracle of our fearfully and wonderfully made bodies. I attribute my body’s response to all of you who prayed so diligently on my behalf. Thank you.

Redo

It’s not often in life that you get a redo. Yet, as I sat in the office of my colorectal surgeon in the middle of January, that was the opportunity presented to me. A redo of a surgery that I had performed nearly ten years earlier.

 In winter of 2009 I got spectacularly sick as the result of a Crohn’s disease flare. I lost about 25 pounds over the course of two months and was in a significant amount of pain. After some testing showed that portions of my colon were perilously narrow, my doctors decided to surgically remove the remainder of my colon. (I had previously had half my colon removed in 2005.) As a result of my surgery, I currently have the end of my small intestine (the ileum) connected to the remainder of my rectum in what is called an ileo-rectal anastomosis (IRA… like an Independent Retirement Account… but completely different.) That’s the short story.

The long story has many more details. You’re welcome to skip to “Back to 2019.” My wife tells me that I over share. ;-)

 As I just mentioned, in 2009 I was spectacularly sick; so sick, in fact, that the weekend before my surgery I had to be admitted to the hospital to get blood transfusions and IV fluids, just to be stable enough to operate on. The imaging tests that were run before the surgery showed a colon with advanced disease and extreme narrowing. This was indeed the case and, just for bonus points, the surgical team also had to deal with a softball sized mass in my colon that had been previously unknown and was wrapped around my spleen. The whole procedure ended up being long and “bloody” (their words.) They also said that I was a miracle and should not have survived as long as I had.

 To top things off, I had a very difficult time recovering and was in the hospital over a week. By the time I got home and had hit rock bottom, I had lost a grand total of 50 pounds and was very weak. Worse, I was in a lot of pain. The medication I use to control my Crohn’s disease also alleviates my Ankylosing Spondylitis pain and does a good job of keeping the AS from worsening. However, I was required to be off this medicine for eight weeks before the surgery and for as long as possible after, by which time the pain and fever associated with my AS was running rampant in my body. Following that surgery, the AS was so out of control that my doctors eventually took me off of any medications to control Crohn’s so they could instead put me on a drug that they knew had previously controlled my AS.

 Predictably, about 18 months after my surgery, my Crohn’s was back. This was really scary because, based on estimates from my surgeon, if the Crohn’s kept progressing at this frequency, there was a good chance that I wouldn’t live much into my 40s.

Several things changed at this point. First, I did some testing and found that certain foods really irritated my GI; while I had intuitively known this, it was affirming to have it revealed through testing. Second, I started to see a naturopathic doctor and the holistic treatments really helped. Finally, I switched medications to a very powerful drug that addressed both my Crohn’s disease and AS. Over the next three years, I stabilized and ever so slowly started to turn the corner and improve. 

So, getting back to my IRA, one of the difficulties with this type of plumbing is that over time, it can start to form scar tissue and narrow. Not everyone with an IRA has this problem, but I did almost immediately. In order to keep this condition from closing off my bowel, I need to undergo stricture therapy (the narrow part is called a stricture) every 6-12 months. I kid you not, they literally insert a balloon into the narrow area and inflate it, thus stretching out the tissue. However, as scar tissue isn’t as elastic as healthy tissue, it doesn’t like being stretched and often bleeds, tears, and otherwise rebels; ultimately beginning the process of narrowing once again.

After my annual stricture therapy in spring of 2016, the doctor announced triumphantly that for the first time in years there was no sign of active Crohn’s disease. He then mentioned that he’d used a new procedure to cut out some of the scar tissue rather than do balloon dilation. In summary, this new procedure put me in the hospital in 2016 and 2017 with copious amounts of GI bleeding.

That brings us to 2018. For various reasons, all related to the stricture in my IRA, I ended up in the hospital in March, October, and December of 2018. Five trips to the ER and five hospital admissions (including two stints in the ICU) in three years was enough; stricture therapy had reached the limit of its usefulness, and all my doctors agreed the old IRA needed removed.

Back to 2019. Thus, I found myself in the middle of January, sitting in the office of my colorectal surgeon. I wasn’t sure what he’d recommend. In order to keep all my plumbing on the inside, there would need to be enough healthy rectum to remove the old IRA and still have room to reconnect. Otherwise, I would need a permanent ileostomy.

The news was all good: I currently have the entirety of my rectum still intact and, even after removing the old IRA, there should be plenty to reconnect. Further, the part of my rectum currently involved in the IRA is notorious for having poor blood flow and forming scar tissue. There is good clinical evidence to suggest that a new site lower in the rectum will behave better. Additionally, in the intervening decade since my last surgery, the surgical community is much less concerned about the medication I am taking and now only requires a little over four weeks off the drug. Further, the plan is to restart my treatments (the medicine is given via IV) as soon as it’s clear that I don’t have an infection post op.

 There are several key unknowns with my surgery. First, during my last surgery (2009) I had a temporary ileostomy while the IRA healed. As explained above, the surgery was so big and bloody and traumatic that the new connection needed time to heal. Once the IRA was healed, they stuffed everything back inside and stitched up the site of the ileostomy. This site is further up my ileum than the IRA and has also experienced its own minor episodes of narrowing. There is healthy intestine between the ileostomy repair and the old IRA and the surgeons are optimistic that they can use a procedure called strictureplasty to “fix” this area. However, there is no clear direction on how much intestine to remove. Do you hack out 16 inches of irreplaceable healthy tissue, or risk surgically repairing a small section that has historically narrowed a bit, leaving two surgical sites to heal? 

Second, the redo: once the surgeons have removed the gnarly (that’s the medical term) old tissue and used their Singer sewing machine to restitch my innards, they will put the whole thing under water and force air through it to make sure the wound is sealed. Bubbles, bad. No bubbles, good. If that process sounds familiar it’s because it is exactly the same high tech process used at Winkler Tire to look for leaks in my tires. Should the new IRA not be completely sealed, I’ll need a temporary ileostomy to give the wound time to heal.

 All that said, the prognosis is good and the surgeons expect to be able to redo things, use strictureplasty to save as much small intestine as possible, and not have a temporary ileostomy. They expect the best case scenario: I get a redo on a better location on my rectum. I’ll be on powerful medication almost immediately following surgery, and my Crohn’s will never have a chance to bother the new IRA. I live the rest of my life with my plumbing all on the inside, no complications, and no more trouble beyond the monitoring. (Of course they cannot predict this last sentence... but hey, best case.)

 But, the truth is, what does anyone know of “best case”? Maybe the redo heads down the same path as 2009 with annual stricture therapy and subsequent hospital stays. Maybe the “best thing” for me is a permanent ileostomy. Or maybe a permanent ileostomy is a bad idea for some reason we don’t currently know. We don’t know the future.

 The truth is, I don’t know what is best. But I know who does. And I know He loves me. If you’re reading this post, I ask you to join me in praying for my surgeons; not only for their work, but also their decision making. They will be faced with decisions of what to remove, where to cut, where to stitch and, ultimately, what solution to provide. Pray that the “best case” will be the obvious decision based on what they find.