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.