I had lost my ass. Not in the colloquial sense, like when a chronic gambler loses at the casino. I mean in a literal, inside and out sense.
The rectal resection surgery took most of my rectum. How much, I can’t say exactly, but when I asked my surgeon he said, “Most of it.” The reason they took so much was because no one was sure if the cancer had spread to the lymph nodes surrounding the tumor, so they took as much rectum as they could without my losing it completely.
To add insult to injury, because I was in the hospital with the ileus for so long and unable to eat, I lost 40lbs in just about four weeks. The weight loss stole my best feature–my perky butt. I was aghast when I went to shower, looked in the mirror, and saw that I now had a flat ass. It really drove home just how much cancer was going to take from me. Unfortunately, over the coming months this wouldn’t be the worst of my ass-related trauma.
Losing that much weight in such a short period of time has significant repercussions. Stupidly, when I was finally allowed to go home on January 14th, I thought that as long as my ileostomy continued working I would recover and start getting back to normal within a few days. Nope.
The weight loss had weakened me severely and exacerbated other issues, like the neuropathy in my left leg and both feet. For the first week or so I had very little energy and spent most of my time in bed. Stairs were a challenge, and I was often left winded just climbing the 13 steps between our first and second floors. When I tried to help with chores, like dishes, I needed to take frequent breaks because of fatigue and pain in my back and legs. Even showering was difficult.
Taking care of my son in a way that included more than sitting on the couch and watching him play or, if he felt like interacting with me, reading to him was a non-starter. I was home, but in some ways I still wasn’t able to be with him like any parent would want.
Elijah took some time to adjust to my return. While he’s always preferred Hanh in certain ways–kid is a mama’s boy–he had understandably come to rely on her for everything over the month I was gone. I wasn’t a stranger to him, not exactly, but there was definitely some distance there that was tough to acknowledge. Bedtime was especially difficult. I couldn’t help because I couldn’t lift him, and he became so reliant on Hanh helping him to sleep that if she left his room before he was in a deep sleep he would throw a tantrum. Basically, we had entered sleep training all over again.
Gradually I was able to increase my movement, then start helping with chores and child care, until my strength and energy returned to the point where it wasn’t a tragedy if I was unable to get a two-hour nap in during the day. After a month or so, maybe around mid-February, I generally felt pretty good day-to-day. The neuropathy hadn’t gone away (it never will), but I was able to do chores and even some light exercising with an elliptical and exercise bands.
I was also able to take care of my kid again. Honestly, the best exercise I have available is carrying around my 30-pound son. As my legs got stronger, the pain I felt in my left leg dissipated. It’s still there if I focus on it, but I rarely notice it on most days. Before the reverse ileostomy I was able to spend entire days with my son on my own, something that was unthinkable in January.
Caring for and adjusting to my ileostomy was a more difficult challenge. I’ll write a more detailed post about what it’s like living with an ileostomy somewhere down the line. For now, I’ll just say that it took a while for me to adjust. Not only seeing a section of my small intestine protruding from my abdomen, but learning how to manage my output. Diet is tricky with a stoma, especially if you want to live an active lifestyle and not be tied to a bathroom all the time. Eventually I learned enough about my stoma that I could sit through John Wick 4 without bursting a bag. Aside from my anxiety over the reversal surgery, there was never a time when I wasn’t counting down the days until the ileostomy was gone.
And that brings me to the story of what I came to call “Butt Stuff March.” It started with a late February check-in with my surgeon. After the health issues I’ve experienced for the past year, I’ve become a firm believer in radical transparency. If something seems weird, I’m going to mention it. Even if something doesn’t seem weird, I want my physicians to have a full understanding of what’s going on with my body just in case something is wrong that I wouldn’t know to recognize. It was with this belief in mind that I told my surgeon I was still having some bloody bowel movements.
I use the term “bowel movement” loosely, here. With an ileostomy you technically don’t have bowel movements. Food can’t make it that far into your bowels for any movements to take place. That said, your bowel does still produce mucus that needs to be flushed. In that sense, you still have to sit on the toilet and move things from time to time. In my case, sometimes I was only moving blood.
My surgeon was concerned about this. Early on it was expected that I would have blood sloshing around in my colon because of the surgery, but that should have been gone by now. He worried I had somehow developed a leak in my anastomosis. If we reversed the ostomy while I had a leak, it could kill me. At the very least I would get very sick. “I’m going to do a digital exam,” he said. I’ll spare you the details, but I did text my wife afterward to say 0/10, would not recommend.
The digital exam didn’t result in anything conclusive, which was actually encouraging because if there was something conclusive it would have meant something was terribly wrong. My surgeon outlined a plan for the next few weeks. A sigmoidoscopy with a stiff camera to see if anything was wrong up there, and then a barium enema that would show if there were any leaks.
The following Monday I had the sigmoidoscopy. I was put under general ansthesia and nothing seemed amiss, but I was quite sore afterward. The Monday after that, March 13th, was the barium enema. You aren’t given anything for enemas. You just go in, they shove a tube up your ass, pump your colon full of fluid, take x-rays, then send you home. I assumed that it would be easier than the digital exam. I was wrong.
I laid on a hard, cold table on my left side, with my right leg pulled up toward my chest. Before they started the procedure I caught a glimpse of the enema catheter and was surprised at its size. In hindsight, perhaps this was a mistake. It probably made me tense up. The nurse started the insertion and I was in immediate discomfort. The doctor, bless his heart, tried to help me relax by talking me through it, but I was in genuine pain. The nurse struggled to insert the catheter, even asking if I’d like to do it (I assume because sometimes people either have some experience doing at-home enemas or at least know their own bodies well enough to navigate the insertion process–at the time I had neither). I declined.
After an excruciating minute or so they gave up and said they were going to try a foley catheter, which is much smaller. The problem we faced was that with a small catheter I wouldn’t retain the fluid that helps x-ray clarity, which means the results would be suspect. They successfully inserted the smaller catheter, started pumping the fluid into my colon, and I almost immediately felt it coming back out and spilling down my leg. They asked me to clench. No dice. This wouldn’t work.
The doctor came to me and said they were going to try the full-size catheter one more time. If I was in too much pain, or they couldn’t get it in, they’d give up and my surgeon would have to figure out another way to check for a leak. He explained that for most people, the initial discomfort goes away after 30 seconds or so. The nurse rounded on me again and this time was able to insert the catheter and inflate the balloon that was to keep all the fluid inside me.
Unfortunately, the discomfort did not dissipate after 30 seconds. In fact, I was in quite a bit of pain the entire time. But I got through it. Afterward, I voided the liquids that were in my colon and asked if it should have a red tint. The nurses replied that the fluid should be clear. Apparently I was bleeding. Again, I spent the rest of that day and the next quite sore.
A few days later my surgeon gave me the results of the enema. It was a good thing I had stuck it out, because they found a leak. My ileostomy reversal would need to be delayed at least two months. I was also to go in for another colonoscopy with the intent to find the leak and patch it in the hopes it would heal faster. That Friday, March 17th, I met the specialist who would do the patching. She explained that with leaks as small as mine there was no guarantee they would even find it, let alone be able to patch it.
“Butt Stuff March” continued the following Tuesday, March 21, with two at-home enemas and the colonoscopy. The at-home enemas were easier on me than the barium enema, although I also don’t think I did them 100% correctly. I did them well enough that my colon was clean for the specialist, but only barely.
As you can imagine, I was pretty down as I headed to the hospital for this next procedure. Nothing had gone my way over the last several weeks, I was in a lot of discomfort from weekly plundering of my backside, and the specialist seemed pessimistic that they would even be able to do anything about it. I was put under general anesthesia expecting the worst and telling one of the nurses how much I missed my cat in the moment. The adorable demon below, specifically.
I awoke some time later already resigned to the fact that my ileostomy would be with me for at least two more months, if not longer. I had read stories from other people on ostomy forums that had their ileostomies for years before getting them reversed. A nurse approached and told me that they didn’t find any leak. They had shot fluid into my colon and it didn’t go anywhere.
I started to cry, then had to explain to the nurse that they were happy tears. The specialist eventually came by and explained that my anastomosis (i.e., where they had stapled my insides together) had formed a pouch that caught the fluids they shot up there. The x-ray misinterpreted that as a leak.
I was good to go forward with the ileostomy reversal.
