Thursday, March 16, 2017

New Developments

I spent a week in the hospital and left without a colon.
Yes, it got bad enough that I was literally on my last legs.
I couldn't drive to work or do much more than sit in my chair
and watch TV.  The pain from my colitis was so bad that I 
couldn't wait for my surgery.

I was amazed at the cards, balloons, gifts and flowers I received.
I had no idea that so many people would be thinking about
me.  Some friends went above and beyond!  
I owe them big time.

I could barely eat and when I did it was so painful that
you didn't want to eat anything.  I got very weak since
Christmas.  My poor husband had to do everything the past few months.
I've lost 100 lbs and was very dehydrated, so much so that they 
thought I was not creating enough urine.  It turns out that I 
was so dehydrated I was absorbing almost all the fluids they
were pumping into me.

The day after they removed my colon I felt great,
comparatively so.  No gut pain, no cramping.  I had
a pain block shot before surgery that would last a day
so I would not be in too much pain when I woke up.
I was exhausted from the surgery that was around
5 hours long.  I had a pain medicine pump which I
used the first day or two but minimally.  I did use it just
before physical therapy, they recommended it so my
session would be productive; however, I stopped using it
early and they were surprised- even though they sent me
home with a prescription for a VERY strong pain medication
which I never took.  

I was on clear liquids for a couple days and then 
progressed to full liquids (add cream of wheat, 
milk and ice creams, puddings, etc.)
Then they had me on soft, low residue foods to see
 how I tolerated it before they could release me.

When they remove your colon they give you an
ileostomy.  This is a  stoma
which you cover with a pouch to collect your stool.
It's your small intestine that is brought to the surface of 
your skin and sewn on, sort of inside out.  You empty the 
pouch a few times a day and every few days change the adhesive
wafer that holds it on your stomach.

Now I need to determine if I keep this system 
or go for reconstruction,  I am leaning to keeping 
this.  It is inconvenient, the drawback is that you have a
bag attached to you that needs emptying and runs the
risk of leaking at some time, almost all do at one
time or another.  The biggest drawback is if I lose
my job or insurance, how will I pay for these very
expensive pouches?  With insurance I pay $13 a month,
without it would be $270 and that is without any of
the paste or other accessories you need to maintain them.

Reconstruction has its risks.  The Doctor says it works well for younger
people.  Older people, I'm 57, especially with auto immune issues
do not do as well, run the risk of infection, urgency and control
issues plus pain and burning.  The output would be liquid since
the drying takes place in the large intestine which I no longer have.
The liquid is caustic and can cause sores if your wafer leaks or
when you are getting used to your reconstructed J pouch
(again your small intestine that is used to create a pouch and
attached to your rectum/anus).  It can take a couple of years
to work through the issues and I just don't think I can go 
through that after the last couple years of problems.

I'm on medical leave right now.  Home Health was
coming in twice a week to watch me clean the stoma
and change my pouch.  I passed with flying colors by the way.

I couldn't do much.  Rest, eat soft foods, watch how
new foods affect me, no exercise other than walking,
no driving, no lifting.  So I embroidered the squares for 
my Bee Creative quilt along.  I'm doing the sashing now.
I will return to work Monday but on a work from home basis
for the next two weeks. I physically return in April when I can
make the hour drive and be able to lift my laptop bag in and 
out of the car.

I can eat again!  Nothing spicy or fibrous yet but I will be working
my way there after a few months.  You still have to be careful.
You can get a blockage in the stoma which is bad so avoid
nuts, popcorn, celery, seeds, etc.   

This is my gastroenterologist.  He was just named a Fellow of the AGA.
He took care of my until he referred me to my surgeon then sent 
me a nice note the other day to say he heard from my surgeon that I was doing
 much better.  I sent back a congratulations note on his fellowship.

That explains where I have been.  I don't have much to post but 
my husband has been taking good care of our granddaughter, Taylor who is 12, when
she visits on the weekends.  They are learning to read maps, use compasses,
hiking and geocaching.  We have picked up some things at REI that will be helpful.
She is learning to shoot various firearms.  She is showing interest in youth 
competition which  is available through our Conservation Department.

Finding the geocach

Without realizing it she is getting survival training.
I hope she won't have to be our next John Conner 

I don't know how often I will post but as I get
stronger and start doing more things I'm sure I'll
get back into the swing of things!


Susie said...

Hi Kathy, so glad to hear you are on the road to recovery after a long time of pain. A friend also had the same operation and is now back to normal after many months and coping really well dealing with her bags and it has given her a new lease of life after all the years of pain. I hope your recovery continues to go well and can't wait to see your quilt when it is finished.

Your Granddaughter looks like she is having a great time in the wild and learning some new skills. Our Boys did all this with our Scout Group and loved every minute of it and Eldest had to do it all again on an Outward Bound course for his job and he was so pleased he knew how to do it all.

Take care, Hugs, Susie x

Ginger Dawn...A Spice Below The Horizon said...

Oh sweetie I was so wondering what had happened to you. Thank goodness for wonderful doctors and good friends who are nearby to help and comfort. Don't worry about the job or bills. Those things always work themselves out. It will be a lifestyle change for sure. Thank you for educating me. I am so amazed at how far we have come with medical technology. Continue to heal and the stitching looks beautiful.

Lady Locust said...

So good to hear from you! And wow! Glad you are in less pain and hydrated again. I had a friend who went through that (including reconstruction) in her 70's and did remarkable. She lived to 92:). Just to ease your mind a bit. Nice that you can do some stitching to occupy your time. Also your husband deserves a big hug. You keep well and continue your recovery. Sending thoughts and prayers your direction.

Sunnybrook Farm said...

Lucky that they can figure things out and take care of things like they do today. Imagine having it 50 years ago, I guess we were living in the dark ages in a way when it comes to medicine. I hope you can recover quickly and enjoy the spring.

LindaG said...

Good to hear from you! Take care and take your time getting back to normal.
God bless, Kathy. said...

I've been following your blog for a while and enjoy your writing. So sorry you've been thru such and ordeal, but so thankful for the skilled medical staff you had. It sounds like you have a great attitude and it will take you far. Congratulations on your successful surgery and will pray for you.

Kathy Felsted Usher said...

Thanks everyone!

Ginger, I tried to comment on your blog but it won't let me, I get an error. I hope you will be feeling better soon. I would like to join the Sisterhood, I need to do that.

Manny said...

Kathy! You've been in my prayers. I have not forgotten you. You are such a survivor and so courageous. God bless you. I look forward to seeing more of your posts. I will continue to pray for you.

Yahoobuckaroo's Blog said...

Glad ye didnae die lassie. Bit then ye wid hae hud a brand freish butt, sae dying ain't sae ill as a' that.

Practicing my Scottish. Still got a wee bit of work to do....

Home you're feeling better soon. May the bird of paradise fly up your skirt and say howdy-do!