Hi, I'm Laura Cox, Shield HealthCare's Ostomy Lifestyle Specialist, and today I wanted to
talk really honestly about the things that still bother me about having an ostomy, and
then some of my solutions.
Now, I am so grateful to have an ostomy and to still be alive, but just because I'm grateful
doesn't mean that they're aren't minor nuisances that get in the way of some of my days.
At Shield HealthCare we believe in putting a positive spin on everything, but we also
believe in in being genuine and honest.
So here are some of the things that still bother me about living with an ostomy.
First, those occasional leaks.
So, it's no fun to wake up to a bed that has been leaked in.
And it can be really inconvenient.
And, when I do have a leak, it's usually at night.
Only about once or twice a year because I have gotten to be an expert at putting my
pouch on, but I still do have those leaks.
And it's inconvenient.
What I like to do is call my employer or my professor, let them know that I will be late.
I take a shower, change my pouch, throw everything in the laundry and then go to work.
Sometimes I reward myself with my favorite latte or thirty minutes of yoga, just to try
to turn the day around.
And I end up being pretty proud of how I handled it.
And being able to continue my day as usual.
Another thing that bothers me sometimes is the fact that I have to rely on supplies every
single day.
And although I don't mind pouching and I don't mind having the supplies, one of my fears
is that a natural disaster will happen or something will happen where I can't get the
supplies I need and that really worries me when I think too hard about it.
What I do to combat this worry is I make sure that I have at least three month's worth of
supplies stocked in my home, so that in case something does happen, I know that I'm covered.
Another thing that bothers me is worrying about my pouch being visible underneath my clothing.
I wear tight clothes and I'm not willing to compromise that, so what I do is when I start
to feel my pouch getting full, I'll go and empty it.
We also have a video about to dress with an ostomy, to conceal the pouch.
You can find that link below.
Another thing that I think about often is making the "Swimsuit Decision."
Do I want to wear a cute bikini and possibly deal with people looking at me and asking
me what my osotmy is and disturbing me?
Or wearing a one-piece which I may not love as much, but it will allow me to go to the
beach and not worry about people wondering what my ostomy is.
And that really is a personal preference.
I know people who only wear bikinis and only wear one-pieces.
I tend to think about what I'm doing, if I mind educating people, and making the decision
from there.
I usually opt for a one-piece.
One of the things that still bothers me the most after ostomy surgery are abdominal adhesions.
These usually happen to me when I am moving around a lot or doing weird yoga positions
and it's basically just scar tissue left over from the surgery that can sometimes get caught
on itself and cause a significant amount of pain.
The thing that I do when these abdominal adhesions are acting up: I lie flat and allow it to
work itself out and if necessary, I use a heating pad to help with the pain, Tylenol®,
and in some instances, I do use Vicoden® or Norco®.
So since the ostomy bag ends right in the inside of my legs, it does kind of rub and
cause abrasion.
The thing I do to eliminate this is I roll the ostomy pouch up a couple times and I'll
tuck it into my pants or a specially-made pair of ostomy underwear or wrap and that
completely eliminates the issue.
One of the other really difficult things is explaining my dietary restrictions.
Everyone with an ostomy will have different dietary restrictions.
For me, it means no raw vegetables or I will get a blockage - a lot of cooked vegetables
don't even work.
And any fruits with skins.
That's pretty specific and the things that are good for everyone else are things that
are bad and dangerous for me.
It's really hard for people to wrap their minds around it.
They always assume it's allergy.
I just explain it as, "My body can't digest things that are very fibrous.
So that's what I can't eat."
The last thing that bothers me is a "catch 22," because I'm so grateful that my ostomy
allows me to look healthy, to do really wonderful things, but it also contributes to people
not thinking that I'm that sick, because I do look so healthy.
This is less of just an ostomy thing, but a chronic illness thing in general.
I think it's really hard as someone who has gone through a lot of painful chronic illness
years to be told that you don't look that sick, or you can't possibly be that sick because
you look so good.
Because it does feel like that's taking away from the pain and the life lessons and the
trials and tribulations of living all those years with a chronic illness.
So just try to avoid saying that if you can.
So those are some of the things that bother me about living with an ostomy.
Although I am so grateful and I love still being alive and still being here, there are
still some things that bother me, and I wanted to be very genuine and open.
For more informational videos about ostomies, please check out our community site at shieldhealthcare.com/ostomylife.