The blog is handy sometimes. I can get away with one update.
My support team was very active today with thoughts, wishes and prayers. I love it! Thanks guys. It helps.
Today was a gong show. I don't want to be whiney and complaining. I'm hoping to do my battle with grace and thanks. It was hard today. My body was uncomfortable. My sensory issues were on overdrive. It was super, super hard to get my comparmentalization skills to stay on task. It was a LONG day for for both of us. We left Duncan at 9. Home at 8:30.
Small summary. The plan changed. I ended up not getting into the operating room until 3:30 - 4. Then out at 6:30. The general anesthesia was switched to max dose sedation instead. Easier for healing. There wasn't any good news.
The surgeon will be passing me on. I will have a team, for good practices consulting. She is going to stay on my team and will be in the operating room for the big surgery. She was clear that my best chances will be to go with a stoma.
She also let me know that her patients who fare the best in their battles are always the ones with a good attitude. So when I say that mental health is the main goal. I mean it.
For today, we picked up some pain meds, opiods, so of course I'm too scared to take them. I'm uncomfortable but no where near the point of taking an opiod. Today was more than I expected. The recovery is a lot. Now that I have my list of things to do and not do I can see why she thought I should cancel the trip.
The trip is going to be extremely challenging for me in a few ways. But mostly in that I need to do a sitz bath after each bowel movement. Reminder, with a total colectomy, the average is 8 times a day! That is a lot of sitz baths! Uh....how does that work on a road trip, in hotels, public bathrooms and on a cruise with no tub. We just bought a peri anal wash bottle, like a portable bidet. We can pack a kettle and thermos for warm water. This will keeping things interesting or annoying, or both ;)
Eric and I have made it to Noddle Box. My little kids box. So cute. I couldn't eat it all. I was starving after my 22 hour fast. Thanks again everyone for your support. It definitely helps.
