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Day 16 Post Cystectomy

12/6/2019

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Still haven't slept all the way through the night yet. I did try to sleep on my left side for a little bit, but it felt like it was pulling at my stomach, so I went back on my back.  I finally fell asleep around 1am, and then woke up around 2:30am and finally got up around 3:30 and ate a piece of bread and butter and drank some chocolate almond milk and then fell right asleep until about 7am.  So not too bad.  Except this morning I woke up with my bag leaking (I KNEW we should have changed it yesterday!!), and I have to say, it was a little traumatizing!  I was surpised at how much it affected me!  Thankfully, since my husband had just washed the sheets yesterday, they weren't affected!  Whew!  But my nightgown had 2 big wet spots and my underwear was a little wet and I smelled like pee (boo), and I hadn't ever changed my bag on my own so I felt a little overwhelmed with the prospect.  But my supportive husband stood with me and helped me talk and walk through changing the bag, and so we started the process. 
  • I put a waterproof pad underneath my bag and began peeling the base piece away from my skin slowly.
  • Once that was done I slipped the whole bag up around the stoma and the stents to take it off, which caused the one stint that had already come out like 3 inches on Wednesday to come out probably another inch more!  Ugh! 
  • Once the bag was removed I used some adhesive remover to try to clean the residue glueish substance that was still there, and once I did that I wiped the area with a skin prep wipe to prepare to put on the new flange. 
  • After letting that dry for about a minute I opened the flange and stretched it to what I thought was the size of the stoma.  I hope I did that right! 
  • I then slipped the stents and the stoma through the hole of the flange and applied the flange to my skin pressing down for quite a while.   
  • I then took the bag and slipped the stents through the hole in the bag and began snapping the bag to the flange.  It was a little difficult getting it connected all the way around, but finally, it appreared to be secure all the way around.
OK - I think we're good here.  And then a friend called and asked how I was doing and I started crying!!  It was a lot more traumatic than I would have expected it to be!  I remember reading about the possibility of the bag leaking, and I remember thinking in the back of my mind, 'well, that won't happen to me!'  Didn't realize I was deflecting like that until this happened and basically wigged me out!  The ramifications of this are pretty big.  I'll need to make sure I always have a change of clothes and a new urostomy bag ready to go.  Wow. 

Well, my sweet husband took some new pjs and my robe and threw them in the dryer.  After I cleaned up he presented me with warm pjs and robe!  It felt so good!  So I told him I wanted to make him some breakfast, which I did!  3 eggs, over easy, bacon, and rosemary bread and yogurt! And I made myself a bacon, egg, and goat cheese sandwhich with a side of yogurt and blueberries.  Yummy!  All is good with the world!  He left to go meet some friends and I was faced with what to wear again today.  I spied a long shirt of mine we had washed yesterday that was hanging there drying, and I thought - maybe I could wear that!  I found an old pair of hip hugger, flare legged black jeans, put those on, and slipped on my shirt, and it just covered the bag (see inset picture). So that's what I wore all day!  I had to be very careful when I sat down as the bag would peek out from my shirt if I didn't pull it down as I sat down, but it felt pretty good being in my own clothes for the first time in over 2 weeks!!  This made me want to go on a walk NOW!  But I didn't want to go alone, so thankfully, our 2nd daughter (as we call her - my daughter's friend who is staying with us until she gets married next month) was here and more than willing to come with me.  We went on a lovely walk together and enjoyed the beautiful sunshine here in Florida - it was divine!  Now it was time to think of that blasted stent that now ran the full length of the urostomy bag.  It was bugging me so much I decided I wanted to just head into the doctor's office and have him look at it and tell me what to do.  So when Tim got home, we grabbed some lunch, and then he took me to the doctor's office in Tampa.  They were very gracious at the office and the doctor saw me right away.  I explained how difficult it has been to get ahold of anyone when I had questions, and he told me to just text him since he had given me his cell phone number at my follow up visit.  He then looked at my stent and said it was fine and it would eventually fall out anyway (oh really?  That would have been nice to know ahead of time) and I had nothing to worry about.  I asked if I could cut it so it wasn't so long, and he said I didn't need to but I could if I wanted to, so that's what I'm probably going to do.  I'm really glad I did that because for some reason it was bothering me so much since Wedneday - it was just reassuring to have the doctor look at it and look me in the eye and say it was OK.  I just needed that.  And they didn't charge me an office visit or anything.  I kept that outfit on the rest of the day, but by the evening I realized just how uncomfortable I was, so I changed into my pjs early.  The rest of the day was blissfully uneventful as I continue learning how to live this new normal.

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