It’s 413 days ATN and 13 days since the surgery to reverse the ileostomy.
This is just a quick update to let you all know that I’m still alive. For the most part anyway. The ileostomy reversal is a fairly simple procedure compared to the rectal resection a few months ago. We initially thought I’d be in the hospital overnight and then home on Day 1 (day after surgery) Instead I was there until Day 4 and really wouldn’t have minded a couple more days.
Those of you not too keen on hearing about what goes into a toilet bowl may want to skip this post. Or, at least, don’t read it while eating dinner. You’ve been warned!
Two things affected recovery. The first is that my bowels had a three month break and weren’t all that keen on getting back to work. They still aren’t. Normally your colon receives the output of the small intestine and among other things absorbs liquid. Eventually things move to the rectum which pushes it out. Well if I infer things properly my colon didn’t “turn on” and was passing liquidy output to the rectum. The rectum wasn’t too thrilled with things in general. I suppose it can be given a little leeway. I mean if you were cut in half and had a good chunk of you removed you might not be too thrilled about getting back to work anytime soon. The result is much like things were during radiation therapy. Many, many, many frequent trips to the toilet. And when you’ve got to go, you’ve got to go. The nurses initially wanted me to call them so they could walk me to the bathroom but once I explained the urgency to them they agreed that I could press the call button then run to the bathroom. Even with that there were some very close calls. (The nurses are worried since after anesthesia you’re a fall risk for a while. Plus I had to lug an IV pole that was hydrating me for the first day. It’s amazing how fast you can move an IV pole when you need too…)
Things in this department will take a while to improve. Let’s just say that JT was able to drive me home without any accidents on the way. I did warn her that we need to go home, straight home, do not pass go, and I’ll just give her $200 so don’t stop to collect that either. A side effect of this is that I wake up in the middle of the night about once an hour to head to the toilet. Oh and passing gas doesn’t exactly work. The hospitalist called it “wet gas”. Basically if you try to pass gas other…stuff…will come out with it. Imagine trying to pass gas when you have diarrhea. Bad idea if you’re not at the toilet!
Probably related to the bowels-not-turned-on thing was severe cramping on the night of Day 1. Severe as in you have a cold sweat. I ended up calling the nurse and told her I was probably at 8 or 9 on the pain scale. She noticed the cold sweat and asked if I needed something stronger than oxycodone, which is what they normally would give for “breakthrough pain” (I was on IV Tylenol already, which is standard for this surgery apparently.) I asked for whatever they gave me during recovery. It turns out this was Dilauded, which is a fairly strong opioid. It blunted the pain sufficiently that I could get a bit of sleep. Until I had to wake up to run to the toilet again.
Based on how things were progressing on the bowels front I probably would have gone home on Day 3. But in the afternoon of Day 2 the liquidy output started taking on a red tinge and by early evening was almost all red. Something somewhere was bleeding. The nurses called the hospitalist and the weekend rep for surgery. Since I was asymptomatic (not showing a fever or feeling lightheaded) they weren’t too worried but wanted my blood counts checked in the morning. If I showed any symptoms at all then they’d stat the order. As it turns out my blood counts were stable. Since it was Monday my regular surgeon was back in the hospital and when he stopped by I asked him what was bleeding. He said its almost certainly the surgery site where the small intestine got reconnected. It wasn’t bleeding when he closed up but something could’ve passed through and scraped the area (it’s why they had me on a low fiber/soft digestive diet to begin with. But even that apparently wasn’t sufficient.). He said that this type of bleeding is usually self-limiting and should stop. Eventually. (While it looked like I was dumping pints of blood into the toilet, even a small amount of blood can turn the bowl red. So I really don’t know how much blood I was passing. Either it wasn’t a large amount or my body’s really good at replacing what it loses.)
As usual my surgeon was right, and in the early afternoon I went from passing bloody liquid to just liquid again.
That incident kept me in the hospital another day. And to be honest I wasn’t in great shape when I got home. In the previous (and more major) surgery I felt ready to go home on Day 2. In fact I really wanted to leave on Day 2 but was discharged on Day 3. This time I wasn’t chomping at the bit to leave though I felt I was in a shape where I could get by at home. When I got home I walked to the mailbox and back. And felt wiped out. I’d never felt so weak, even during chemo. I suspect it was a combination of factors – GI issues, lack of sleep, lying in bed for five days. Basically, post-hospital syndrome. It’s been a bit more than a week and I’m starting to feel that my energy is to a level where I can do things like walk to the Safeway across the street without being winded. (It’s amazing how even with that fatigue, my body somehow finds the energy to sprint to the bathroom at breakneck speed whenever I need to go. Maybe that’s why I don’t have much energy for anything else…)
Things seem to be ever so slowly be headed in the right direction though. I’ve heard it can take weeks or two to three months for bowels to settle after an ileostomy reversal. And I had the ileostomy for three months, which was a bit longer than the six to eight weeks we initially planned. Hopefully by the next post things will be well on their way to the new normal.