Slight Mayhem

increased pain, increased urinary complaints. it's not been terrible, and i've just not been sure what level the increase should be expected since i switched to peeing out of my new anatomy versus a catheter. l expected some difficulties, but when i was peeing, it was slow- difficult. it would literally take me 3 minutes (i timed it) to empty my bladder, during which time i felt like i was going to explode, and i would literally have to push like i was constipated, only from the front. (i wasn't constipated. )

I was able to do a zoo trip on Tuesday, the day before my most recent dr visit- we were there for about 4 hours and I walked at least 2 miles, using lots of ice, lots of breaks, and a walker. I very much doubt I could have done it with my cane. I'm not sure about the FA crutches. Wednesday was my 3 week McClung update- I explained the increased burning with peeing, pressure, discomfort. Being back on the full dose of Tylenol maxed out, back on the azo/Pyridium, maxed out. I definitely have a UTI and what they are considering a "weak stream".

What they are hoping for now is that the treatment for the UTI will help improve the stream that it's just decreased currently because of the bacteria and response to the bacteria- rather than it being a stricture issue (the two other options are a stricture or the tip of the SP catheter is bending and partially blocking my urethra). So I'm supposed to leave the catheter open to drainage for the next couple of days while the antibiotic builds up in my system. And then try again with voiding before a 4-week follow-up next week. I'm definitely out for work for the next 2 weeks, minimum.

Before the UTI, which I think started mid-week last week, I was very decreased on my pain meds but I'm back up to maximum doses of all my meds with near-constant ice again.

I can't take narcotic /opiate pain killers due to all of them giving severe migraine. My surgeon was aware of this and he said it wouldn't be an issue, we would rely on other meds and the anesthesia/pain management team would be on board. I had a list of recommended options from the American Society of Pain Management Nurses and I Brought it to both my pre-op apt and my surgery day. When I talked to the anesthesia on surgery day he was totally agreeable and said he understood, he gets migraines too. They put me out without any, and I learned I got ketamine while I was asleep. Secretly, I was hoping for this because of all the positive after effects of ketamine for chronic pain, depression and anxiety, but that's a side topic. The surgery lasted about 4 hours.

I woke up and the pain wasn't too bad. I had an epidural- my right leg was basically dead to the world. I couldn't lift it or feel it, except my big toe- but my left one was okay, no weakness or anything. They guessed the epidural catheter was laying too much to the right. As the day went on, the anesthesia wore off and I was able to sit on the bedside, leaning off my genitals and onto the side of my left thigh and later, stand using one leg, for about 10 minutes. I was able to lock my right knee and place weight on it, but I couldn't move the leg with weight on it- the knee would instantly buckle.

I was also constantly using ice for pain control besides the epidural, and my bed kept getting wet, assuming from the ice leaking, but the nurses/aids were all so busy and didn't seem too concerned so I just kept covering the wet areas with blankets, etc. My pain control was great! 0-2 this day, mostly because of the after-effects of the anesthesia and the epidural bolus- everything was numb.

Day 1 post-op (Tuesday)

The anesthesia started wearing off more and I was beginning to be able to move my right leg more. The pain came after that, maybe as high as a 6. The epidural had a "bolus" setting so by pushing the button to get an extra dose I could manage it mostly, with the ice. Around 9am the pain was getting worse even with the boluses so I told the nurse who said she'd be back. I waited, she didn't come, I told the aide who said she'd get the nurse. She never came. It was constantly climbing from a 6-7-8 so I pushed the button after 10 am. I had tried everything- getting on my hands and knees to relieve pressure, pillow under my hips and between my legs, one leg on the side rail. Nothing helped.

The nurse came and asked which med I wanted and I said the strongest thing that wasn't narcotic (because of the migraines). The only thing ordered that wasn't was two regular strength Tylenol. So much for my several month long careful planning about pain control. I assume they assumed I would take the other stuff if the pain got bad enough. I got ice and Tylenol and asked her to call for IV nsaid medication called toradol (like a very strong ibuprofen). They got that ordered for me later that day and that made a big difference. Later that day, I was able to get up to the chair because my right leg was more functional- I found out if I sat half cross-legged on my left leg, it let my genitals "dangle" and be without pressure and I could sit mostly in my right hip. I also stood for about 20 minutes and marched at the side of the bed. It felt so good to get up.

One thing I realized when I got up- the "leaking" of the ice bags was actually leaking around the catheter- I was laying mostly in a pool of my own pee. I wiped down some, and got a gown change, got them to put a "puppy pad" on the hospital bed and was able to convince them to change the dressing around the catheter more to keep the urine off the incisions. I still had a wet gown when I woke up in the morning but it was a lot better than this day. To date this was the "worst" day.