Time for an update… I didn’t realize the storyboard had been transferred to the new format. So, where was I with my story…
2/22/2006: Bowel Prep day. Yuck.
2/23/2006: The Big Surgery. I had my cystectomy at the U. of Michigan hospital. I was in surgery for 7 hours. It took a little longer than it might have otherwise because my doc didn’t get a clear margin on the urethra because my tumor was near the bladder neck. Knowing I wanted a neobladder if at all possible, she decided to try again and did get a clear margin. I spent 3 hours in recovery where I apparently got something in my eye because once I was taken up to my room and talking with my family and friends, my biggest discomfort was that my eye was watering like crazy. They thought I might have stuck my finger in my eye as I was coming off the anesthesia, or something could’ve been dropped in it. Otherwise, it wasn’t too long before I had the bed cranked up so that I was pretty much sitting upright. Everybody was amazed — including myself how well I was doing so quickly.
The next day (Day 1) I got a chance to do a little inventory of what new "attachements" I had. They had 2 stents coming out of each kidney which drained into an external pouch, a Foley catheter, an IV line, and a Jackson-Pratt (JP) bulb to drain the surgical area. My incision was 5 inches that ran north/south starting about 2 inches below my navel. I got out of bed in the morning to sit a chair while my bed linens were changed. I got up again to sit in the afternoon and shuffle a few steps around the bed and then finally my big walk out the door and into the hallway for a grand total of about 100 feet covered. It was definitely a slow go and I was happy to get back in bed.
(Day 2) I felt pretty grimey so I got myself out of bed in the morning and decided my project for the day would be a shower. It was quite an undertaking with all the attachments but I managed to do it myself. I also walked a little farther down the hall and back a few times as directed.
(Day 3) Walked a little farther.
(Day 4) Bowels started waking up. Felt a little queasy, but not too bad. Walked a little farther
(Day 5, maybe sooner) JP bulb removed. One less thing to have emptied.
(Day 7) Staples removed. Found out pathology results from doc: lymph nodes removed were all clear, the tumor hadn’t reached muscle. 🙂
(Day 8) Had a bowel movement after my post-lunch 3 lap stroll around the 8th floor and thus got my "get out of the hospital free" card.
All in all, the worst part of that first week in the hospital was my total inability to sleep due to: me being a light sleeper, noisy/much sicker than me roommates, the nurse’s station being right outside our door, the residents and interns flipping the lights on at 6 in the morning during rounds — just when i would start to feel tired enough to sleep. One word: Ipod (with good noise-cancelling earpieces)… a Godsend with all those hospital noises. Sign up for a private room if you can. I didn’t really have much in the way of pain. I only hit the morphine button the first night to help me sleep (it didn’t work) and never had to take the vicadin they sent me home with.
A week or 2 after I left the hospital the kidney stents and external bag were removed and I think it was another week after that the Foley was removed. None of that really hurt either. The Foley didn’t bother me as much as I thought it might… it was just kind of a hassle irrigating it. Toward the last week that i had it in it got clogged up by the neobladder mucus a few times. The first time it took about an hour of me being in severe pain in my kidney area to figure out what the problem was. Once I irrigated the pain was relieved.
After the neobladder "training wheels" (the Foley) were figuratively taken off I thought I’d be peeing all over the place uncontrollably. It didn’t happen like that at all. I had daytime continence within a week at most, except for some leakage during a walk. Nighttime continence took longer, as advertised. I don’t remember how long exactly, but the size of the pads I needed decreased pretty quickly. After a few months I would be dry when I woke up in the middle of the night to pee.
Being a bit of an athlete I was anxious to get back into shape, but I didn’t want to screw up the surgery so I did nothing but walk until 8 weeks — 2 weeks later than the doctor said I could resume regular exercise. I started lifting weights again (very easy at first) and started jogging (.5 miles at first). About that same time I think I strained an abdominal muscle — I think from straining to urinate. i thought I gave myself an incisional hernia, but it wasn’t. The muscle strain eventually got better, but I continued to need to really push to urinate. I would need 10 or 15 minutes before I felt like I was close to empty. What was happening was I was gradually becoming hypercontinent. By 5 months I could only urinate if I had at least 350 ml in my neobladder. My doctor had warned me before the surgery that hypercontinece happened to roughly 30% of cystectomy patients. In my case her theory is that my reproductive organs make for a crowded lower abdomen which pushes down on the neobladder, which puts a kink in the urethra/neobladder junction. Testing will occur soon to discover a cause. In the meantime (and perhaps forever), I’ve been self catheterizing 4 times a day. Initially it was a little depressing especially because I was having a hard time doing it, but now, 2 months later I’m pretty close to having completely adapted to my new "normal". Considering this has been the only price I’ve had to pay for my cancer diagnosis, I can’t feel too sorry for myself… I’d been sailing along too easily. Something had to go wrong I guess.
I am happy to report that I have regained my previous level of fitness — and then some. I was jogging 2 miles a few times a week after 4 months and 3 miles after 6 months. After about 3 months I went rollerblading and biking along with the other fitness activities. I was told by my doc I had absolutely no restrictions, but I waited 6 months to play "twisty" sports like golf, softball and tennis as advised by a golfing resident who pulled my staples while in the hospital. He sufficiently scared me about the horrors of incisional hernias. I also started playing in my competitive volleyball league again a few weeks ago. Prior to my surgery I didn’t know if i’d be able to do all this stuff again because nobody my age with my activity level wrote about it. So here’s some data for you active, youngish neobladder candidates.
As for my shortened small intestine… it has been a gradual process to get back to normal bowel movements. It took weeks — perhaps months. I still don’t think I’m done healing. I occasionally have had bouts of total emptying after eating large meals — especially if they are greasy. I kind of had this problem pre-op, but it was worse initially after I started eating normally again. It’s gotten better though gradually. I hope it will continue. I’ve had a couple episodes of rather severe abdominal pain combined with diarrhea and nausea. The first time it happened, 6 weeks post-op, I thought I was having a bowel obstruction, but my doc thought it sounded more like a stomach bug since after the pain relieved i still had diarrhea for a few days after. The second time was last week, but that could’ve been because i had bagged spinach the night before i became symptomatic and a day later the fda released an alert for e. coli tainted bagged spinach. This time the doc suggested I start keeping a log to see if perhaps I’ve developed some sort of digestive problems (e.g. gallbladder). If it weren’t for that first bout I would’ve been back to work at 6 weeks instead of 7.
Hopefully, my story illustrates that getting a neobladder isn’t the end of the world.