Happy New Year!!!!

I am SO hoping this blog will help someone who is going to need a cystectomy!  I really thought I was prepared for what I was going to be going through, but I definitely was not!  I would recommend going back to the first entry in this blog and reading the whole thing at some point to get the full picture.  But for this day, I'm going to list out everything I can think of that happened to me that I wish I had known about, be it just information or practical advise.  I'm sure not everyone has the same experience I had, but if you do experience anything of what I did I think it will help you to hear about it before hand!  So here we go:

• After surgery I had an ng tube in my nose - had no idea I was going to have it.  I think I had it for about 24 hours, and thankfully I was out of it for most of that time, but still, would have liked to have known about that  ahead of time.
• I was told I would have 4 holes for 4 robotic arms in my stomach, but I think I really had more like 6 holes.
• One of the holes on my right side was used for my stoma to stick out of my stomach.
• Another of the holes was used for a JP Drain (I would recommend looking that up and reading my entries on that because I had never even heard of it before my surgery and had no idea I was going to have it)!
• The hole was bigger than the JP Drain tube, so I was also leaking fluids out of the hole around the JP Drain.  After the nurses spent every hour or 2 changing guaze around the opening for a whole week, my doctor came up with the brilliant idea of putting a urostomy bag on the site so it could easily drain into that and be easily emptied (check out my entry on that on November 28).
• I was also draining like a waterfall from my vagina - especially every time I got up.  They gave me pads in the hospital for that, but I discovered adult diapers were WAY more effective! 
• They tried to give me something to eat the day after my surgery if I remember right, but I just couldn't eat.  I wasn't progressing as I should have been (I honestly don't know what the indicators were) so then I was on NPO (basically, nothing by mouth) for the 5 days after my surgery while they tried to figure out what was wrong with me.
• When you are on NPO, you can have your mouth swabbed with a sponge dipped in water, and maybe some ice chips, but that's it.
• I noticed my upper left thigh was numb.  My doctor said he remembered moving that nerve to the side so it definitely wasn't cut and he believed I would get the feeling back, but now 6 weeks later I think it's just as numb as it was, so me thinks the feeling won't be coming back.  Not a huge deal, but would have liked to have known that was a possibility.
• It was finally discovered that the end of one of my ureters necrosed (died), and that was why I wasn't progressing as I should.  My doctor explained that your ureters get their blood supply from the kidneys and the bladder, so when your bladder is removed the kidneys need to step up and supply all the blood to the ureters.  He said normally it is not a problem, and he had never seen this happen before, but obviously my one kidney didn't supply enough for the ureter that was connected to it, so he had to go back in (this time cut me open) and remove the necrosed part of the ureter and reconnect the rest of the ureter to my stoma.  This sounds like a rare thing that probably won't happne to you, but it did to me so I'm putting it in here.
• You will have 2 stents coming out of your stoma about 2 inches long that some doctors remove a week or so after your surgery, but my doctor evidently allows them to just fall out eventually.  Mine have been slowly coming out a little at a time so I clip them when they get too long, but it's been 6 weeks and I still have them.  When one started coming out a week or so after I got out of the hospital I freaked out thinking it shouldn't be doing that - would have been great to know this was normal.  Wish I knew how long they will be around.  I'll update this bullet point when I know.
  
• At my follow up visit a week after I got out of the hospital, my doctor removed my JP drain and put a bandaid on the hole.  I subsequently developed shoulder pain whenever I was verticle that lasted about 24 hours.  My home health nurse said it was due to our bodies normally being in a state of negative pressure, and when an open hole in our body is closed it takes awhile for our bodies to regulate the pressure and shoulder pain can exist until we are regulated.  Another side effect that I think was related to the JP drain removal and negative pressure was that my waterfall that had still been coming out of my vagina 2 weeks after surgery completely stopped right after the JP Drain was removed that day.  Bye bye diapers!
  
• I highly recommend staying on a stool softener for about a week to 10 days after surgery, and then switching to a good probiotic after that.  That seemed to work great for me!
  
• I didn't know ahead of time that I would have a home health nurse coming to my house regularly after I got out of the hospital to help instruct me on how to change my urostomy bag.  Had I known I would have researched ahead of time what Home Health Care companies are in my area and covered by my insurance and which have the best ratings.
• CLOTHES!  This is a really big deal!!  Get some smock type dresses on hand (at least 5), especially if you are relatively thin, because if you wore form fitting clothes before, they WILL NOT WORK!  I'm 6 weeks post surgery and my belly still is a little swollen and my stoma sticks out a least an inch.  Even hip hugger pants still feel tight to me, so the only thing comfortable at this point is a dress.
  
• If you use a night bag (which I highly recommend), clean it every day and then get a new one twice a month (had I known that I think I wouldn't have gotten a UTI a month after my surgery).
  
• The way I clean my night bag is as follows (this may be overkill, but after having a UTI, I would rather err on the side of overkill!):
  
  • I take a funnel I ordered off of Amazon (https://www.amazon.com/Ajax-Scientific-Polypropylene-Funnel-Diameter/dp/B00EPQ466O/) and I insert it in the top of the tube of the night bag that connects to my urostomy bag and I put 2 pumps of hand soap in the funnel and chase it with about 2 cups of warm (not hot) water in the funnel and let it pour into the night bag.
  • I swish it around a bit (not too vigorously as you don't want it to get too soapy) and then drain it.
    
  • I then pour about 2 cups of cool water into the funnel into the night bag and swish that around and drain it.
    
  • I then take about 2 cups of a vinegar solution (1 part vinegar to 2 parts water - it doesn't have to be exact) and pour that down the funnel into the night bag.
    
  • I swish that around and then let that sit for about 30 minutes and then drain it.
    
  • I then take another approximately 2 cups of warm water and pour that down the funnel into the night bag.
    
  • I swish that around and then drain it.
    
  • I hang the tube attached to the bag in my shower with the bag drain unclamped to let it dry out as best as it can (the bag will still have wet spots in it).
    
  • Before I connect my urostomy bag to my night bag I take an alcohol wipe and clean 3 things - the drain of the night bag, the top of the tube that connects to my urostomy bag, and the drain on my urostomy bag.
    
• When you connect to your night bag, make sure you have opened the drain of your urostomy bag and that you have clamped the drain of your night bag (have made both of those mistakes more than once!).
  
• Before you disconnect your night bag in the morning, make sure you close the drain of your urostomy bag (I know these are common sense instructions, but it is easy to not remember these little details when you are recovering from surgery and anesthesia!).
  
• If you think you are going to get a lot accomplished while you are in bed recovering (whether it be reading or catching up on TV shows or just watching movies), don't be surprised if you just don't have the desire to do anything but sit and stare.  It's OK. 
  
• When my Home Health Nurse came the first time (2 days after I came home from the hospital only after I called multiple times to make sure someone was coming) she changed my bag, had me sign a bunch of paperwork and then ordered supplies for me for the month.  I had no say in it (wouldn't have known what to say anyway), and she ordered urostomy bags from one company (Hollister) and base pieces (also called phalanges) from another company (ConvaTec).  If I had that to do over again and knew about it ahead of time I would have requested all ConvaTec supplies.
• If you're not happy with your Home Health Nurse, call the director and ask for someone else (which is what I did - so glad I did!).
  
• If people offer to bring meals, say yes!!  Have a friend set up a meal train if possible.  A great site for that is takethemameal.com!  Then write a thank you note to each person who brings a meal.
• Ask someone in your family to document who sent you flowers in the hospital or to your home and write them thank you notes.
• If people ask if there is anything else they can do for you, I recommend either mowing the lawn or cleaning the floors in your house and maybe dusting.  
• Make sure you have a shower chair when you get home from the hospital!!!
• I thought I could do an outing a day starting 3 weeks after my surgery - I should have only done 1 outing every other day for at least the first week of getting out.  A friend told me that whatever I think I feel good enough to do I should cut it in half, and that's what I should have done.  One outing every other day would have been smart.  
• I recommend cleaning your stoma every day or every other day by first washing your hands and then leaning over the sink, removing the pouch, taking gauze and gently wiping the goo off, and then replacing the bag.  It's simpler than trying to do it sitting down and trying to keep the pee from getting everywhere.
• I have read some people completely change their bags and bases every day or even twice a week.  I've been doing once a week and that has been working very well.
• My favorite way so far to change my base and bag is as follows:
  
  • After a shower, I sit in my bathtub with all my supplies around me on the side of the tub. 
    
  • I place gauze on my right leg to catch the pee and set to work removing the base with the bag still attached (see no need in taking an unnecessary extra step by removing the bag separately). 
    
  • I use my left hand to push down on my skin while my right had pulls up on the base until it is free from my skin. 
    
  • I then take adhesive remover and get all the adhesive off of my skin. 
    
  • I sit there for about 5 minutes and just let my skin air out. 
    
  • I then take a skin prep pad and rub it on the skin where the new base will go. 
    
  • I give that about a minute to dry, and then I take the new base and remove the circle piece that protects the circle and thread my stents and stoma through the hole and then press it firmly down on my skin. 
    
  • I then remove the rest of the things and press the rest of the base firmly on my skin, holding it down for about 30 seconds to let the warmth of my hand cause it to bond with my skin.
  • I then connect the new bag to the base, and I'm done!