Challenges
Adjusting to an Ostomy for
Young People
Contents
·
Adjusting to an
Ostomy
·
A Teenager’s
Ostomy
·
I’m a Stoma
·
The Nicest Thing
They Could Say
·
Look People...Things
Change
·
A Loving Wife Speaks
Out
Adjusting to an Ostomy
By: Marshall
Sparberg, MD
An ileostomy,
colostomy or urostomy is a major development in anyone's life. Yet adjustment can be still more traumatic
for a teenager or young adult. The older person who is married and
established in the world, may rapidly readjust to his new situation aided and
encouraged by his/her spouse. There is a
job to return with renewed vigor and strength.
Life is resumed. For those with
long illnesses, ostomy surgery gives them their lives back.
The younger
ostomate may not have such a feeling of
belonging. If the surgery is preceded by
a long illness, then he/she will have fallen behind his/her classmates, both
academically and socially. Returning to school without familiar friends will seem strange and disquieting. A major difficulty for the young is being different, regardless of the cause. Not being "one of the crowd" is a
major consideration. Already singled
out previously by the ulcerative colitis, Crohn's, or other condition with its
sometimes dietary and physical
restrictions, the younger person may feel this difference from others more
acutely when returning to his/her social
circle with an ostomy. True, no one need
know about the ostomy, yet an inner feeling of being different still
exists. Gym classes and swimming must be approached carefully, not to mention the more intimate aspects of dating.
Another obstacle
for the young is the choice of occupation. For the adult individual who is self-employed
in a profession or
his/she own company, there is
less reason for concern. But those who
want to work for companies or
government may face a great fear of
rejection because of the ostomy. If
physicals are required, the young ostomate will probably find the medical
examiner or nurse to be unfamiliar with the daily life of a person with an
ostomy. He/she may assume it is a
handicap to achieving productive
work. He/she may be unaware that the ostomate is actually now freed from
debilitating disease, and eager
to make his/her mark in the world to show he/she is normal again. Ostomate do most kinds of work, just like
everyone else. An ostomy is an
obstacle that can be overcome. It
requires a person of character to overcome it.
A constant battle
is being waged against job discrimination
based on lack of medical knowledge. The
only way victory can be achieved is by facing unafraid such practices. One approach is to ask a physician, such as the surgeon who
performed the ostomy, to make a
call or write a letter to the medical
examiner.
The United Ostomy
Association and its chapter are one of the best sources for accurate
information on the potential capabilities of people after ostomy surgery. Do remember that this is becoming less of an
issue all the time. With the
implementation of the Employment Disabilities Act, employers are very aware of
the issue of unfair discrimination for those with adaptable physical
conditions. An ostomy is not a
handicap. Just try and get a disability
pension with it. They'll laugh at you. And for good reason. It is a physical condition. It is like wearing eyeglasses, or a hearing
aid, or missing a finger, or toe, or teeth, or hair etc. It should not restrict an ostomate from
virtually any career he/she may choose.
Just like the man who is 5'1" tall and wants to be a professional
basketball player, it may be possible, but it may be more prudent to choose an
occupation more compatible with your gifts.
A little issue may
be that of finding a mate. It may not
be much of an issue for the well adjusted and self confident, but will be a
large a issue for one who makes it so.
Since the ostomy is not noticeable externally, casual meeting and dating
should not present a problem. But for
some, even this will cause a problem because of the diminished self-image one
has. When a deeper relationship is
established, the ostomate must decide when the other person should be told
about the ostomy.
Let us be
clear. It is necessary to tell the
person you love you have an ostomy sooner rather than later. You want to be fair to yourself and to the
other person. Some people will have a
serious issue with it. It is their right
to feel that way even though it may be unfair
to you. Some will not. The other person has a right, just as you
do, to pick the mate of his/her choice.
This may not be what you want to hear.
But you always want to do what is best for the both of you.
I'll tell you
honestly, you will definitely find someone who loves you with your ostomy. It may not be the first one you meet. But I am sure it will be by the 20th
one. Don't settle. You have a right to be happy. Choose the person you love and the one who
will love you back. Make sure you love
what is lovely. Our modern society has
distorted the beauty of marriage and living a life long commitment with
someone. It you decide to degenerate
your values for something superficial and hollow, you will not be happy. If you set you sites on the real prize of
true love, I guarantee you will find it and be happy.
Tell the other
person long before serious plans are made about marriage. A simple, calm manner should be used to
explain about the ostomy. For example,
"I was very sick at one time and was cured by an extensive operation
requiring removal of the colon (bladder, etc.)." " I am fine now, but I now go to the bathroom through an opening
in my abdomen." If you are aware,
you'll know in a short time after this how the other person truly feels.
There are many
stories of how people stay together and even marry out of sympathy for the
other. Don't do this! You both have an obligation to be open and
honest about how you feel about each other including the ostomy thing. Be happy.
An ostomy is not an impediment unless you dwell on it, and make it a
self-fulfilling prophesy. Regardless
of the situation in which an ostomate needs to explain his/her condition, the
emphasis should be on good health, happiness and gratitude with the ostomy the
vehicle for the beneficial results.
Have a Great Life!
A Teenager's Ostomy
By Renard Narcaroti
"Life at its
best is not easy to live. Life at its
worst is not impossible to live."
Teenagers in all cultures have the challenges of learning about
themselves and their place in the world as they
become adults. Having a sickness
makes this process more difficult.
Young people have ostomy surgery for a number
of reason. It may be from an acute case
of Crohn’s disease or ulcerative colitis.
It could be a birth defect such as Hirschsprung's disease, a damaged
sphincter, urinary tract problems or a laundry list of other medical conditions. A few received surgery to save their lives
from an incidence of violence, or a car accident. At the DuPage County, Illinois Convalescent
Hospital, the largest group of permanently disabled people, paraplegics and
quadriplegics, come from motorcycle accidents. Many of them have ostomies.
People who have
had long time illnesses like UC will feel healthy again after surgery and be
given their lives back. But, consider
the case of Virginia Miller. She was a
popular, healthy and active 17 year old coming home from her senior prom with
her date after a magical evening.
Everything was wonderful. A drunk
driver slammed into them killing her date and driving a steel rod through her
abdomen. She didn't even know the
accident occurred until she woke up in a hospital bed. It was days later when she saw the
"bag". Although these types
of ostomies are usually temporary, hers would be permanent because of the
complications resulting from her particular injuries.
Virginia tells
how she gradually went into despair in the weeks after the accident. She was rapidly becoming strong and healthy
once again, but didn't want to know anything about her prosthetic. Her mother would change it for her. She would never leave the house, never see or
talk to friends, cry all the time.
Virginia did not even want to look at the stoma or acknowledge the
colostomy. She was regressing into a
dependent childlike state.
A member of the
local ostomy association called to schedule a visit, but Virginia wanted no
part of it. The visitor persisted and
one day just showed up at her door.
While her mother let her in and Virginia was running into her room,
Virginia caught a glimpse of the visitor and stopped dead. It was a young woman with a perfect shape
wearing form fitting jeans. It is not
what Virginia was expecting.
Virginia thought
she might be tricked. This girl couldn't
possibly have one of these "things" in her tummy. But, when the visitor heard the complaint she
laughed and immediately opened her jeans reveling a scar and an appliance.
Virginia
chocked. The visitor told Virginia how
she had UC as a child and could not have one of the new continent
procedures. The ileostomy gave her a new
life. She dated, went to college, had
friends, went to parties, swam, ate pizza, played volleyball, downhill
skied. She did all those things and more
that Virginia herself did before the accident.
Maybe there was hope?
This all happened
in 1995. Virginia tells us how, through
the caring, persistency and dedication of an ostomy visitor, she did adjust and
took her life back. She is now a fifth
grade teacher and open about her ostomy.
She admits, "I would rather not have an ostomy, and be put together
like everyone else. But, I think this is
a rather little thing when you consider that without it I would be
dead." "I don't think I'll
ever get used to it. Yet, I never
complain that I have my ostomy. It is a
gift from God. Who am I to turn down
such a gift?"
We all remember
being teenagers. We wanted to be
independent, make our own path but being sure not to be too unlike everyone
else. We were urgent about acceptance
from our friends. We planned on how we
would spend our lives, and how it would be successful and fun. This is good.
An ostomy may make one feel different in a bad way. Although, other people are not going to be
aware of an ostomy unless we actually tell them. It is not like being skinny or fat; pimply
faced or bearded; blond or brunette;
short or tall; big nosed or small; young or old, etc. These traits people can see.
An important
question that is always on the top of any list about ostomy concerns for young
people is dating. The question seems to
go something like, "When should I tell the person I am dating about my
ostomy?" It appears that this is a
serious concern teens have when sharing time with the opposite sex. This should not be discussed without further
analysis. The person you date will
probably not know you have an ostomy. If
after a few dates, it is revealed, then it is still only an intellectual
concern because the ostomy is hidden.
Intimacy is a separate matter.
This is a relationship between two people who are in love and are
planning to spend their lives together.
It is a
legitimate concern. Unfortunately, we
usually discuss this in terms of how multiple partners could view an ostomy of
someone choosing to live a promiscuous lifestyle. There is no satisfactory solution to an
immoral life for many other reasons unrelated to ostomy surgery. We want to raise the concern to that of
potential mates.
As we live our
lives, we find some people like us and some don't. Some don't like us because of the color of
our eyes. As long as they don't infringe
on our freedom, they have a right to think whatever they want. It is a free country after all. It may be hard to believe, but some people
will not like us because of our ostomy.
We cannot control and should not control other people. They have a right to free thought as well. But, we may persuade them. As a practical matter, we like people who
like us, despite our faults, shortcomings or ostomy.
We persuade
people every day to do things we want them to do just as we are persuaded to
actions and thoughts by other people. This is how we live. You will be rejected by someone you date
because of you ostomy, or because your blond, or because you talk too much, or
(fill in one of a trillion reasons here).
What matters most, what is important to remember, the thing you want to do
is keep trying.
I guarantee there
is someone just perfect for you. It
probably won't be the first or second one you ever meet. It may be the 12th or the 17th. I do know that if you quit working at it, and
it is very hard yet important work, you may give up on the 18th one
when number 19 is the person of your dreams.
Never settle. You have a right to
find someone you love and that will love you right back. Never quit.
It is worth the journey because you are worth it.
One reason we try
and persuade people in the public's eye to be open if they have ostomy surgery
is to set an example so others see it may be a good thing this living with an
ostomy. Regardless, an ostomy is just
like everything else in life, some great, some not so great. If you respect your ostomy, many others will
be persuaded to respect it too.
"Will I be
able to be a sports star?"
"Will I be able to find a job?" After surgery, one of our members asked his
doctor, "Will I be able to be a great golfer with this ostomy?" The doctor looked at him and said, "I
don't know. We're you a great golfer
before?" Of course, he wasn't. An ostomy will not improve sports
performance. It is an issue that must be
addressed. You must protect the stoma in
contact sports, and consult with a trusted medical professional about your
exact health situation. But this is true
if you have an ostomy or not. A career
is about the same. If you are 5'7"
tall and weight 97 pounds, it may not be prudent to consider a pro wrestling
career with an ostomy or not. Clement
Stone in his book The Success System
that Never Fails says that one of the three requirements for success is
a burning desire. Nowhere does he say
that one needs a burning desire for success except if you have an ostomy.
The world is
complex. Easy answers are often wrong
answers. That is why we have groups like
UOA. We may come together and discuss
our individual situations as they develop throughout our lifetimes. We don't have solutions, just ideas. A lot of us have lived most of our lives
already. In virtually every culture
since time began, the elders have been the key source of judgment, knowledge,
wisdom and advice.
In reality, they
know every feeling a young person is having.
They had the same exact ones. You know, every teen thinks whatever
he/she is feeling or experiencing is completely unique in the history of
mankind. I know I did. It is good that young people talk to their
peers about their concerns, problems and feelings. It may very well help.
Unfortunately,
some people, both young and old, are unsympathetic to the challenges faced by
us because of ostomy surgery. Still,
talk to a friend. More good will emerge
than bad. Our experienced people who
have lived life and considered the problems of youth for 50, 60 or more years
may have empathy about your issues because they have first hand experience with
similar issues. They may have an insight
developed over a lifetime. UOA has a lot
of these people.
It is not easy
being young. It is not easy having an
ostomy. But both are worth having, big
time. There is emotional support for
you. In addition, when you become more
at ease with your ostomy make sure you in turn offer emotional support to
someone else. We are all in this together. You will discover the very best way to find
the answers you are looking for is to help others find their answers. Be happy.
You have been given a new life.
I’m a Stoma
By
Mary Lou Thomas, RN/ET
Hi! I’m a stoma. I am great when you think about it. I must admit I have upset many people, some
even consider me crude, rude and socially unacceptable...well, excuse me!
Just about everyone gets bent out of shape when their doctor says it may
be necessary to create a stoma. They
make it sound like a dirty word. Listen,
it isn’t the greatest for me either.
I’m usually created from a piece of your intestines. I guess you know all about that and then maybe,
just maybe you don’t—so I will tell you now.
Becoming a stoma wasn’t my original function. I used to just lay there in your abdomen
minding my own business. Then boom! Some surgeon decided—let’s make a
stoma. How could they consider such a
thing?
Well, I guess it was because you hurt so badly from some awful cancer,
accident, disease or birth defect that you would die. Your surgeon knew that by putting me to work...you
could live. And, of course, as an added
bonus, be free of pain. You could get on
with living.
If that is the main reason I was created, then why do so many complain
about me? Did you know, I am not given
to just anyone? You see, there is a lot
of planning and evaluation for each potential human host before I am created. So, you can now say that only a chosen
million or so have ever been lucky enough to receive me. That’s a relief. You see, my people are special. My people are not like the normal
run-of-the-mill people. I must say, it
takes them a while to recognize that fact.
And, sad to say, there are a few who never do.
You think you have problems adjusting!
Phooey! Did you realize that I am
a delicate mucous membrane? Yet, I am
very durable...but some people mistake me for asphalt tile because I’m so
tough. Thank God, I don’t have
feelings, but my friend the skin does.
Do you want complaints? Give a
listen to her sometime. She really gets
upset because of ulcers, fungus, irritants, barriers, etc. We are a team, and a darn good one. I’m moist; she is dry. I’m pink-red; she is natural. I have no feelings, she has many.
One of my biggest problems is my size.
I am not always the same size from one human to the next or even on a
single human. I am not always
round. I don’t always protrude
nicely. Then why do some of you insist
that my barrier is always cut the same way?
You need to check my size once in a while to fit me appropriately. Your shoes fit don’t they?
Some of you complain because I’m not as pretty as you would
like. Well, your anus wasn’t
exactly Miss America! I think I am very
`attractive. I am the color of a
rose. I am always moist if I’m
healthy—just like a doggies nose—and I don’t smell. My discharge can’t help but be the
result of what you put into your mouth.
If you care for me with thoughtfulness and keep my equipment clean,
everything else pretty much takes care of itself.
In closing, let me say that you can live a good, long and productive life
with me. It’s up to you. I’m just a small part of you trying to
do the best job I can.
Your Special
and Important
Contributed By Jane Michnik
One day a teacher asked her students to list the names of the other
students in the room on two sheets of paper, leaving a space between each name. Then she told them to think of the nicest
thing they could say about each of their classmates and write it down.
It took the remainder of the class
period to finish their assignment, and as the students left the room, each one
handed in the papers. That Saturday, the
teacher wrote down the name of each student on a separate sheet of paper, and
listed what everyone else had said about that individual.
On Monday, she gave each student his or her list. Before long, the
entire class was smiling. "Really?" she heard whispered. "I
never knew that I meant anything to anyone!" and, "I didn't know
others liked me so much." were most
of the comments.
No one ever mentioned those papers in class again. She never knew if
they discussed them after class or with their parents, but it didn't matter. The exercise had accomplished its purpose.
The students were happy with themselves and one another. That group of students moved on.
Several years later, one of the students was killed in Viet Nam and his
teacher attended the funeral of that special student. She had never seen a
serviceman in a military coffin before.
He looked so handsome, so mature.
The church was packed with his friends.
One by one those who loved him took a last walk by the coffin. The teacher was the last one to bless the
coffin.
As she stood there, one of the soldiers who acted as pallbearer came up
to her. "Were you Mark's math teacher?" he asked. She nodded: "yes." Then he said: "Mark talked about you a
lot." After the funeral, most of
Mark's former classmates went together to a luncheon. Mark's mother and father were there,
obviously waiting to speak with his teacher.
"We want to show you something," his father said, taking a
wallet out of his pocket. "They
found this on Mark when he was killed.
We thought you might recognize it."
Opening the billfold, he carefully removed two worn pieces of notebook paper
that had obviously been taped, folded and refolded many times. The teacher knew
without looking that the papers were the ones on which she had listed all the
good things each of Mark's classmates had said about him.
"Thank you so much for doing that," Mark's mother said.
"As you can see, Mark treasured it."
All of Mark's former classmates started to gather around. Charlie smiled rather sheepishly and said,
"I still have my list. It's in the top drawer of my desk at
home." Chuck's wife said,
"Chuck asked me to put his in our wedding album." I have mine
too," Marilyn said. "It's in my diary." Then Vicki, another classmate, reached into
her pocketbook, took out her wallet and
showed her worn and frazzled list to the group.
"I carry this with me at all times," Vicki said and without
batting an eyelash, she continued: "I think we all saved our lists."
That's when the teacher finally sat down and cried. She cried for Mark and for all his friends
who would never see him again. The
density of people in society is so thick that we forget that life will end one
day. And we don't know when that one day
will be. So please, tell the people you
love and care for, that they are special and important. Tell them, before it is
too late.
By Barb Campbell,
Winnipeg Ostomy Association
We who have had ostomy surgery know about change. We are challenged by the new
“change” after our surgery.
The challenges of change are big, but our capacity to respond is almost
endless. We must make changes that are
timely and which also provide long-range strength and health.
Change is constant. Times change,
things change and circumstances change, so we must and do change, adjust, make
new plans, turn in another direction, take a different path.
We are adept at being adaptable.
We re-evaluate priorities and tend to take less for granted. We learn much about ourselves and much about
how precious life and people are. We
learn to say good things that count now and don’t wait until later
because we are acutely aware that later may never come.
This changes us and it changes our relationships with others. We
hopefully become better people. Change is with us forever—in more ways
than one! The following are quotes that are rather timely:
·
“Change
amuses the mind.” “Change is the law of life. Johan Wolfgang Goethe
·
“And
those who look only to the past and present are certain to miss the
future.” John F. Kennedy
·
“There
is nothing permanent except change.” Heraclitus
·
“All
our resolve and decisions are made in a mood or frame of mind which is certain
to change.” Marcel Proust
·
“Never
underestimate the ability of a small dedicated group of people to change the
world; indeed it’s the only thing that has ever changed the world.”
Margaret Mead
·
“Change
is such hard work.” Billy Crystal
·
“The
only person who truly welcomes change is a wet baby.” Mary Francis Henry
By Sandie Storer, Ostomee News
Family members experience a period of adjustment to ostomies just as
ostomates do. I would like to share the
process of adjustment I’ve undergone as a spouse, in order to encourage
others. I hope other spouses or other loved ones can benefit from knowing the
process of change I have experienced concerning my husband, Gene’s
ileostomy and that they will realize any guilt or pain will pass to brighter
days.
The change in our lives seems so much smaller than it did a year and a
half ago when my husband had ileostomy surgery.
Looking back on the process of acceptance, I can see different stages
much as one experiences in bereavement:
Denial—For the year prior to Gene’s surgery, we both denied
its necessity. I tended to slip back and
forth between denial and anger. I was
angry that he was denying the inevitable—then I would deny it. When he actually had the operation, I tried
to act like nothing had happened. I
refused to look at his stoma and wanted nothing to do with the Ostomy
Association. This was a mistake. Now, I see there were avenues of emotional
support our UOA chapter had to offer; but I was pretty stubborn.
Anger—I
had little support here in our home community as we were fairly new in the
area, and I got into some pretty traumatic emotional problems. I became very
angry and withdrawn and had to rely on professional help to bring me around to
the bargaining stage.
Bargaining—I
was angry with Gene for something he had no control over. Once I admitted that, I was willing to talk
with him about compensating for his stoma.
I was expecting him to somehow be a better husband to make up for “what
he was putting me through”. When I
could have been a staunch support for him, I was expecting him to consider me.
Thank goodness he had his ET nurse, the doctors, and the UOA chapter to help
him.
Depression—I
finally reached the depression state and spent a lot of time sleeping. It was difficult to do housework. I started to feel guilty about not giving him
more support. I was so upset with the
procedure that would put an end to the dreaded ulcerative colitis he had
suffered for ten years—a procedure which saved his life.
Acceptance—Now,
I am more accepting of his ileostomy. I
will someday make some fancy pouch covers—maybe a Santa Claus! Seeing how well other ostomates get along in
the world has been encouraging to me.
What has happened is not something thing terrible, but something life
giving and wonderful.