Thursday, June 22, 2017

It's Been Awhile


Gosh, I sure hope this doesn't set the tone for the post!
No, no worries, it's all OK.

While I have had my issues we were able to take off
a day (that was not in a hospital) and drive down to 
Branson, taking my granddaughter to Silver Dollar City.
She's 12 and good company on roller coasters.
Not that I ride them but my husband does so they took the
death defying rides together while I roamed around the shops.

This is at the fish hatchery at Table Rock lake.  I got a kick
out of the buzzards that perched above the tanks hoping to grab a bite or two.

We had a day at Silver Dollar City, played mini-golf, stopped at
Bass Pro in Springfield on the way home and made 
another stop at an outlet place on our way back home.


Since my last post I thought I was out of the woods but ended up with another
 bout of C-Diff that was diagnosed after two ER visits missed it.
I was down to 109 lbs and the doctor had to scope me to figure
it out.  It seems that you don't normally get it in your small 
intestine so it was missed. In a couple weeks I was feeling
much better after the antibiotics took care of it.

I was ordered to gain weight or I wasn't getting my final operation.
Since I have met all my out of pocket expenses I'm not going to miss
that one.  I wish I would have had the order in writing because I would
have framed it!  It was the first time a doctor ever told me to GAIN weight!

So, next operation is on the house in addition to all prescriptions!
I received a text from CVS pharmacy asking me if I wanted to refill
my prescription that started with (they give the first 3 letters).  
I wasn't sure what it was but had a good guess.
"Why yes!  I do indeed want you to fill any and all prescriptions!"
Remember- it's all at no out of pocket expense now.
I'll take anything they want to give me!
Turns out it was my EpiPen that I keep just in case due to the bees.


It's another year with a crappy garden since I have been so sick; 
however, I'm posting some photos of some of my gardens.
Blackberries, cone flowers and elderberry flowers.
I have cantaloupe, watermelon, tomatillos,
zucchini, tomato, peppers and herbs planted.


The bees are still alive but I don't know what the honey yield will be. 
It would nice to get some this year.  Last year we had to leave it all
for them to eat over the winter.


Elderberry flower

I had my 58th birthday on June 19th, another reason
we spent the weekend in Branson.  The 19th was Monday
so I took off work and did some shopping plus
my annual breakfast at Denny's.  This year I had to drive into
town because the Denny's in the closest town, Eureka, burned
and it's not rebuilt yet.  I really like their breakfast!

I'm still limited in my diet but adding new things all the time, 
hoping I don't run into a blockage- my biggest fear with this
ostomy.  That and any leaks that could happen, based on 
what my Facebook group tells me can and eventually will happen.


I love a nice mimosa!

So, I have another operation in August/Sept and that should be it!!
I have been terrible at the internet too.  I seem to get a couple of
comments posted on FB but that's about it.  I'm hoping to start
getting some vegetables and canning/dehydrating or freezing them.
I need to get back to those bucket list activities that I had planned
and learn some new skills but it might have to wait since the next
recovery period will be 3-8 weeks depending on how extensive the 
surgery needs to be.  I sure have missed a lot of work but they
have been very supportive!  I'm pretty lucky.

I hope you all are doing well and will try to catch up on things. 




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!