It’s hard to believe that it’s been 10 days since my emergency surgery (which resulted in a new diverting ileostomy). The whole thing still seems a little surreal. Surgeons, anesthesiologists, residents, and interns driving in from home to cut me open in the middle of the night. Crazy stuff.
Here’s where things stand today:
- Pain: Moderate. I’m still experiencing a good amount of pain around my incisions, though the “electric” pain near my JP Drain site is now gone. My lower back continues to bother me, and I get occasional cramping pains on both sides. I am also still dealing with the occasional pressure/pain in my J-Pouch. My primary pain reliever is Norco (5mg oxycodone/325mg acetaminophen). I’ve been taking two every six hours or so. I also have plain old oxycodone to use for breakthrough pain (because you don’t want to double-up on the acetaminophen in Norco). I haven’t used the oxycodone too much, but I have used it occasionally at night, and it helps. The challenge is that narcotics cause constipation, which can cause the ileostomy to back-up, which results in pain (and, if it turns into a full-fledged blockage, a trip to the hospital). It’s wall about finding the balance. I’m also using soma and lidocaine patches at night for my back pain to minimal effect.
- Stoma: The good news is the opening on my new stoma is much higher, which hopefully means that I won’t have as much trouble with stool being released at skin level and seeping through the appliance wafer. The less good news is that the stoma itself doesn’t sit up quite as high. My surgeon had a difficult time pulling the loop through because of the scar tissue from the former stoma site and the severe inflammation of the bowel (which is why she used the rod to prop it up initially). I don’t think it will be an issue, but it’s something I’ll have to keep an eye on. The stoma itself seems to be working fairly well with decent consistency, though it’s definitely not yet up to full functionality, and I believe I’ve had a couple partial blockages as a result. As a result, my diet progression will be slow. There’s also a little bit of skin irritation on either side of the stoma from where she cut through the former scar, which I will need to monitor. Finally, I have one external stitch that will need to be removed.
- J-Pouch: I’m still experiencing the pain/pressure in my J-Pouch, which seems to be caused by mucus buildup. Unfortunately, I’ve yet to figure out what I can do to release the mucus. I’ve tried everything, but the results are inconsistent at best. Although I don’t think this discomfort is as bad overall as what I experienced after my first surgery (and I definitely have more control over it—only one nighttime “accident” so far), when it’s bad, it’s bad.
- Prednisone: I’m back to 20mg/day, tapering by 2.5mg/day every week. Due to my pre-surgery flare and all of these surgeries, I’ve been on fairly high-dose steroids since April, which is less than ideal. Fortunately, I haven’t experienced any of the outward side effects of prednisone, but who knows what it’s doing to my insides (e.g., bone density). I want off of it as soon as possible and may consult with my regular GI about accelerating the taper a bit.
- Diet: Low-residue. Taking it very, very slow. At any sign of a slow-down/partial blockage, I switch to clear liquid until it passes.
- Weight: 175. I’ve lost about 20 pounds since June and about 10 pounds since my takedown surgery at the end of September. This is my lowest weight since 2007, when I was living in Phoenix, working a 9-6 job, and working out/hiking at least four times a week. 175 is not necessarily a bad weight for me, but I would much rather I got there through fitness than diet and surgery. I expect I will gain weight back as my diet expands and hope to be able to start a light workout regimen in about four weeks.
- Books: Steve Jobs: A Biography; Wildwood; Sarah’s Key
- TV: The West Wing (haven’t seen a single episode yet!)
- Beard: Full effect.