Dear Meghan,


hubpages.com/anitariley65
The contents of my hub pages are pretty hard for some people. But I started
writing about it all because I was tired of feeling alone in all of it. I also
knew that I wasn't the only one. It's so tough when no one else close to you can
even begin to understsnd what you are going through.
First thing that is so important, is make sure to try and be as positive as you
can around your son. How you both deal with things sets the stage in his mind
about how life will be for him. And believe me, it makes all the difference. My
girls have only seen the good for me. They never knew me any other way, and they
will both tell you that they will be fine if their outcome is the same because
they have watched me deal and they will know exactly what to do.

My girls never had to be awake for their I.V.'s. Their test are done at the two
Children's Hospital's (Akron, Columbus) and they do a great job. The girls get
to pick out a chapstick flavor which is used to coat the inside of a gas mask.
They put them out then do the I.V.'s

I had a hard time trying to get the magnesium citrate down them when they were
younger. But someone taught me a neat trick. Mix the M.C. with kool aid and make
a couple of slushies in the freezer with them. They hardly notice the flavor, so
long as they eat them before they melt. LOL
The enema's are another story. They actually wanted me to teach them how to do
it themselves, and that's what they did, with me very close at hand to help if
needed. They are private, girls are.
I was so happy to get myself put on the registry. I have been so hateful and
depressed in the past about "why me and no one else". I want my future
generations to KNOW.
But it won't do a whole lot of good until they locate the specific mutated
genes. I am waiting for a call from The James Cancer Center to tell me that the
other tests are back to an "open" status so we can have them done. I am on a
medical card so I have to wait for certain dates to open up for this.
You know, I think I was better off all those years without know too much about
any of this. I didn't look for problems, I just went with my gut feeling
(lol-joke) and didn't dwell on what COULD happen. Sometimes (especially now for
me) me can talk ourselves right into some problems. Most of my problems were
with having to deal with skin issues.
I was such a stubborn girl too. I would never ask for help unless I got to the
lowest of lows in my life. There were times that I didn't have insurance, a
medical card, or money, therefore I didn't have my ostomy pouches. I would
simply tape a papertowel around my stoma, and then rinse a bread bag out and cut
a hole in it.
Yeah, it got bad. Then I found out about a place in Zanesville Ohio through the
Cancer Society that had free pouches. When cancer patients pass or they get
better and no longer need pouches, they would donate what they had left to this
group, and in turn gave them to the needy.
I thank God every day for making me an independant lady, and a smart one. LOL
A lot of that all was back in the days when I was hateful and blaming and did
not want any help from anyone in my family.
What kind of work does your husband do? His going back to work all depend upon
that. If he has to sit a lot, then get a donut. Just put a pillow case over it
for work.
The rectum area, for me, was sewn shut a little (very little) inside. They put a
drainage/flush tube in it at first. They will flush it out while in the
hospital, and then when he gets home you will just have to flush it externally
for a little while. Back then they used a betadine solution for me. They want it
to grow shut from the inside out, and it is better that way.
****Just make sure, in the hospital, that they listen to HIM. When they did
mine, they tried to put WAY TOO MUCH solution in during flush, and it hurt like
heck. It also stresses the area (tears) if too much is put in. Be very
pro-active in this, when it hurts or feels like too much, say so.

There is a BIG difference between the J-Pouch and the BCIR.
I just started looking up information on the BCIR after my mom saw something on
TV on it. There are several hospital throughout the US that do this. I had mine
done in St. Louis Missouri. It was the closest for me. My boyfriend drove me
down, stayed 2 days until after the surgery, and I flew home. They make it so
easy for you. Everything is included in the cost, including the flight home.
And, you don't have a co-pay. They eat that for you.

Though, I would start with the regular ileostomy. As far as the gas problems
go, internal/abdominal is always hard to get rid of. I just make sure I get
adequate pain relief from the Dr. to deal with it. Gas with the ileostomy is
different. Sometimes you don't always feel like eating, or the things that you
eat don't like you.
*** Make Beano your bestest friend. Life is so much easier with it, and, less
embarrassing too.
Some of the pouches they make these days have a little filter on them which will
release only the gas from the pouch. When you use these though, make sure you
get some of the odor remover drops so it doesn't smell for those around you. I
know a lot of my mess problems were because of my pouch being full of air and
pulling the pouch loose from my skin.
I will stop for now, but always know that I am here.
anitariley65@...

Sincerely,
Anita