Young people have ostomy surgery for a number of reason. It may be from an acute case of Crohns 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 ogether.
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. UOAC 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.
