ILEOSTOMY WOUND NOT HEALING

October 2015 to December 2015 —To make a long story much shorter, in my followup visits with Dr. Strobos he said my incision wasn't healing completely.  The incision area sank inward causing the wound not to heal.  It was so concave it literally looked like a belly button.  (I teased him that the right side of my abdomen looked great, except for the extra belly button, because it looked like he gave me a tummy tuck,  I told him it would have been nice if he'd evened me up and done the same to the other side!)  There are a lot of people who've gone through this same surgery and post photos of their belly on line.  I'm not one of them ;)  But a lot of us have the same-looking belly.  So picture me that way, but with a second belly button.  If you think your complete-lack-of-muscle-tone-lopsided-butt-looking belly can't get any more displeasing-looking, try adding a second belly button.  

Before attempting to fix it, which would require slicing the wound back up, he sent me for an ultrasound to make sure I didn't have a hernia because of how much pain I had,  He didn't want to risk opening me up if I did.  No hernia, thank goodness.  So in his office he did the procedure, and I'm glad he had something to numb the area first!  He cleaned it out and re-stitched it and it looked great. But a few weeks later it just sank again.  He tried again and it seemed to work.  The final attempt was the end of November.  He said if that didn't work I'd have to see a plastic surgeon!

The only way to make it stay was to pull really hard from as deep as he could to bulk up enough support to hold the incision up.  Even with the numbing meds that really hurt.  He said he was really amazed I was able to tolerate that, and he didn't think many people could.  Yay me.  But I wasn't trying to be brave, I just wanted it over with and didn't want the big to-do of going into the hospital.  (I wouldn't recommend it.  It was very painful, and not to mention gross.  I tried not to watch but I just couldn't help it).  It took and it has stayed!

GOING HOME AFTER ILEOSTOMY REVERSAL

Monday evening, Sept 21, 2015 I got my chest port taken out.  I was pleased when they said they'd just push my bed down to the OR for it since I was so nice and warm and snuggly, but I was nervous that I might have another bout of needing to run to the toilet.  Then I got to the OR and they said I had to move over to the OR table!  That flat, very hard table.  It was so cold in the operating room but they quickly covered me in those warmed up blankets.

They had me lie down with my head on a round squishy gel pad that was pretty darn cold, and I said, "Wow, you guys are a bunch of meanies.  Are you afraid my head's going to sweat or something?" Dr. Strobos got my sense of humor and he laughed.  He took the cold gel ring and said he'd warm it up.  He was squishing his hands all over it.  I don't remember much else, other than being afraid that the cold room was going to make me have to "go".  Luckily I made it through with no accidents!

Tuesday morning, Sept 22, 2015—Here's what I said on my Facebook page:  I'm home! I got home at 11 am today. It's nice to be home, nice to be out the hospital. It'll take at least a couple weeks for my colon to remember how to work again, oh joy. One of my CNAs was a 25-year-old man. I told him, "This isn't something a woman wants to say to a cute young guy, but do you mind getting me some more diapers?" He said, "You mean the pull-ups?" I said, "You know why I need them. Let's face it, they're diapers." He said, "It's ok, you can call them pull-ups. You're a big kid now."  :) That cracked me up.

Thank God for those pull-ups.  Just as the nurse was about to wheel me out of my room in the wheel chair I had to literally jump out and run to the bathroom one more time.  I literally just barely made it.  That was nerve-wracking!

DAY 5 AFTER ILEOSTOMY REVERSAL

So it was Sunday, day five since being admitted, that things finally started working down there.  That morning I had planned out my day:  I would go do my laps around the surgical recovery unit and then come back and take a shower.  I hadn't showered since the morning of surgery and I wanted one so badly.  When I told her I wanted to take a shower that morning, my CNA brought me a new gown, new slip-proof socks, shampoo and conditioner, a washcloth, and several towels.  I had brought a bar of Irish Spring, my favorite soap, with me.

She got me unhooked from my IV and said to call if I needed help.  I took such a long hot shower that she came to check on me twice to make sure I was still ok.  I was definitely ok.  That shower felt so good.  Afterwards I did my hair with my new leave-in conditioner that smells so good.  I rubbed Eucalyptus Tea aromatherapy cream all over me, got dressed in my clean gown and socks and got snuggly back in bed.  I felt so good that I didn't even feel like doing any more laps that day.

Despite me not even having passed gas yet, they said I could be on full liquids, so I had the cream of potato soup, which was pureed and really thin.  I was so hungry that it seemed like it was the yummiest stuff I had ever tasted. I'm glad they finally saw reason.  I kept saying that nothing will be coming out if nothing's going in!  And it worked.  Out of all the tummy rumblings I'd had up until that point, I knew this one was the one I'd been waiting for.

They'd kept saying I'd have gas first and then the bowel movement would be later, but this first bout was nothing but diarrhea.  Sorry, I know that's gross, but that's what happened.  Surprisingly it didn't do a thing for all that bloating and pain.  I was just in more pain!  The bowel spams were horrendous.  I'd sit on the toilet for as long as I could hoping to get out as much as I could because of those spasms, but there was really no telling when the next bout of diarrhea would actually come.  Sometimes I'd get all cleaned up and back to my bed only to jump right back up and run to the toilet again.  It was nonstop for hours the rest of Sunday.  So much pain.  My colon was having spasms from not being in use for nearly a year.

ILEOSTOMY REVERSAL SURGERY

The reversal surgery itself went so much easier than the ileostomy.  The worst part was the pain from the abdominal bloating which lasted for nearly a week.  I had the surgery on a Wednesday and didn't have a bowel movement until Sunday.  It wasn't the bowel movement but the gas I was trying to relieve.  I get that after surgery like that you're not going to pass anything for several days, especially since you're not really eating anything.  But all that gas and bloating….that was unbearable, and to not be able to pass it, ugh.  I'm just so glad it's over.

They give you morphine or Dilaudid, but all that really does is make you want to sleep.  It never makes you feel like, "Hey, I finally don't feel like my belly's about to explode."

I thought I’d miss my stoma and the convenience of the ostomy bag but I don’t.  It’s so much more convenient not to have it.

I was happy to wake up with no bladder catheter but it meant I needed help getting up each time I needed to go pee.  But by the third day I just got up and helped myself and they decided I could be listed as "independent".  Not only to go pee, but I was constantly feeling like I was going to have diarrhea at any moment, so I needed the freedom to just get up and rush as needed.

I also woke up with my chest port still in and my surgeon, Dr. Strobos, said he simply forgot to remove it (but he got me into the operating room the evening before discharge and took it out).

My nurses were especially proud of me for getting up out of bed on my own and for walking as much as I did.  I appreciated their compliments.  They said I was an inspiration and that they should take me around to inspire other patients.  But I was trying to do all I could just to relieve the gas and pain.  It's torture lying in a hospital bed hardly able to move, unable to get comfortable, and in constant pain and pressure from a grossly distended gut.

The first time I made it to the end of the hallway I said "I'm gonna be sick", and fortunately my nurse plopped me in a nearby wheelchair and handed me a bucket.  Not much came up, but it sure felt like there was gonna be a lot.  The next time I got up to walk I made it around the entire hallway of my unit.  And after that I took on the entire hallway of the unit next to mine too.

First you can only suck on a soaked minty-flavored sponge (well you're not even supposed to do that but I did), and chew a couple tiny ice chips.  Then I got moved up to clear liquids but then got demoted again back to ice chips.  By the fifth day, Sunday, and still no food, (not that I was hungry anyway) I was so determined to get stuff moving!

I had been doing my laps around the entire two units up to four laps at a time, several times a day.  And to give me some kind of routine, I carried my phone so it could count my steps, until I realized that the only way to carry it hands-free was to insert it into the little tiny pocket of my gown, which was really a pocket for a drainage tube.  But after noticing that the weight of the cell phone caused significant droopage of my gown and allowing my left nipple to be fully exposed through the slit for the drainage tube line well, I didn't bother to carry my phone with me anymore after that!  So then I started timing myself.  I found I could do four laps in thirty minutes and at a pretty good pace considering I had to push this thing with me everywhere I went.

It was probably by the second day after surgery that I talked them into letting me be off the oxygen.  I hate the way it tickles my nose.  And I think it was by the third day I convinced them to disconnect me from the IV machine when I did my walks.  I could pick up the pace and not over-exert myself if I didn't have to push that thing around.

Dr. Strobos must have exaggerated when he said I needed to do 50 laps a day.  Four laps at a time cramped me up so bad.  I don't think I ever did more than 16 a day.  But I had other ways to get moving and alleviate the boredom.  I'd get up and make my bed, put movies into the DVD player, and if I stretched the IV machine cord all the way out from the wall and then allow my IV tubes to stretch as far as they could go, I could reach the blinds.  I had to reach extra hard to get to the wand.  I liked having the blinds open until the sun came in too much.  And then I opened them again at night so I could see all the lights across Denver.  I watched people coming and going in the parking lot.  Then I found out that it was ok to unplug the machine from the wall as long as it wasn't for too long or the battery would run out.

I had to be careful maneuvering with that machine once things started moving.  I was running to the bathroom at a moment's notice.  Gladly I always made it.  There was only one time that I didn't think I'd make it. 

LONG OVERDUE UPDATE

Today is February 4, 2017.  I'm finally getting around to updating my blog.  It's been a pathetically long time, I know.  Sorry.  I'll give a quick timeline update from my diagnosis in September 2014 to my ileostomy reversal surgery in September 2016.  Here we go!

My cancer diagnosis was September 10, 2014. Six weeks of Radiation and chemo pills (Xeloda) started September 25, 2014 (a day after my 44^th birthday).  Six-week waiting period before surgery (the sweet spot between not having so much radiation still in me when the surgeon opens me up but not waiting so long that the tumor can start growing again).  Cancer surgery with diverting loop ileostomy was December 15, 2014.  Three weeks later I was back on Xeloda and starting IV chemo.  The pills for two weeks, then one week off, and the IV every three weeks, for a total of up to 12 doses. I only made it through 11 doses because I couldn't tolerate it anymore.  My oncologist said it was ok if we stop. I had worn my ileostomy bag for 9 months and came to love seeing my little nub all the time.  My surgeon said I could just keep it if I wanted to, and for a moment I considered it.  But, I really did want the reversal surgery and be back to normal.  

So that brings me to my ileostomy reversal surgery on September 16, 2015, where I left off in my blog.