Hello again,
My surgery was completed successfully on 5/30/2013! I am recovering well I think. A lot of people were telling me this while I was in the hospital. It's hard to think that you're "doing well" when it feels like you've just been hit by a truck... but I guess all things being equal I was/am recovering quickly. I was discharged on 6/3 and have made it successfully through the night at home! Ahhh
I think I am starting to round the corner with the pain too - I can take 1-2 pain pills (oxycodone) every four hours. Yesterday and last night I needed 2 pills every four hours and this afternoon I seem to only need 1 pill every four hours.
I cancelled all of my long term "maintenance" medications today; Humira, Remicade, Lialda, and Mercaptopurine. I have a few weeks of Prednisone to taper, taking 30 mg now. I can't wait to get rid of all of my "travel supplies"!
The Adavan really helped me pre-op and I should have asked for it much sooner than I did. I was quite nervous before the surgery as I didn't really know what time it was going to occur. I was told conflicting times, 7:00 pm... 2:00 pm... "the schedule keeps changing" seemed to be the chorus. I was also under the impression that the surgery would last about
5 and a half hours and I certainly didn't feel very comfortable going into surgery at 7:00 pm for completion at midnight! Turns out that I went into surgery at 2:00 pm and was given a nice dose of anti-anxiety just about
an hour before surgery. I remember scooting over from one bed to the operating table and then having my arms laid away from my body; then I started singing "soft kitty" as the mask was put over my face.
After the surgery I did wake up with a bunch of tubes coming out of me, I didn't feel too much like Frankenstein though. The rectal drain was in for a day, it wasn't painful but it was uncomfortable when I tried to move which made it difficult to get out of bed. I felt some great relief when that was removed! The worst tube was the JP drain; it drained the excess fluid from my abdomen. At times I could feel it sucking juice out of me on its own which wasn't painful but was a weird sensation. My surgeon came by one day and stretched out the tube and OMG, AHHHH, it felt like I had marionette strings inside of me that all pulled together into this external drainage sac! "STAHP!" I screamed. His colleague had done it to me a day earlier as well but I was still pretty groggy from anesthesia plus the pain pump was kicking pretty good at that time too. I was so relieved when the JP drain came out, definitely my least favorite part of the surgery.
I learned a bit about
caring for my stoma the day before surgery and then got a refresher course before I left when I changed my bag for the first time. This will take a while to adjust to and I'm glad that I will have an in-home ostomy support nurse coming by for the next few bag changes. I feel confident that I can complete the change successfully but need reassurances that I haven't missed critical steps!
My surgeon was/is awesome, he is quite talented; apparently the stoma is perfect (and not just according to him either). In general the nursing support staff was exceptional and they all took really great care of me; three nurses specifically will be getting extra extra extra "thank you's" in some form of gift card (or other ideas if you have them?). My second night post-op was not very good; my bag was starting to fill and get really heavy. When the nurses came in to care for me they admitted to having never seen the type of bag with velcro on it before... they couldn't get it to
open to drain and then started pulling on it with some force. I managed to calm them down and had them stop trying to force it
open. It felt weird that this is the first time I'm draining poop from my side and I'm showing the nursing staff how to do it?! I pain pumped my way past that when they left the room. The next night was so much better, the nurses changed my bag for me and made sure I felt clean and comfortable. The remaining stay at the hospital was quite good, although I did have another bout of anxiety when the surgeon tore down my pain pump.
My wife stayed with me during the days and was a great support to me while I was recovering. She continues to take excellent care of me at home while I'm still awkwardly shuffling around and on pain meds. I am so lucky to have her in my life <3
This may be my last update in this thread, maybe not (depending on replies). I am doing a great so far and am looking forward to my life without UC!!
-R