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!