Encouragement for the New Ostomate

Articles Included:

· Encouragement for the New Ostomate

· How Does an Ostomy Affect You

· The Most Asked Question

· Poor Ostomy Management Ideas

· Life As an Ostomate

· Health Care and Ostomies

Encouragement for the New Ostomate

Edited By The New Outlook, Chicago's North Suburban Chapter UOA

Don't forget: Rome was not built in a day!

Even if changing your appliance seems to take forever when you just get home from the hospital, with practice, it will soon become a very small part of your normal schedule. "Waste disposal" for you once again will become a private matter…honest!

Learn to care for yourself from the start. It is nice to count on others in an emergency, but you should perform all ostomy care the same as you would if you had your natural parts. You should not rely on always having someone around to assist you. Do not make yourself an invalid. This may sound insensitive, but it is meant to tell you that your really alright. If you have physical issues, it is an entirely different situation. But, most of us have no physical issues when performing ostomy care by ourselves. Be independent.

Think of a healthy baby boy when he is due for potty training. He is not happy about it. Boys are the worst. But with gentle coxing, and persistent encouragement, he finally goes to the toilet by himself. Ostomy surgery is similar. We have to be potty trained all over again, and just life before, the boys are the worst. Just like when they got their diapers changed, they like their mamas, their wives, to do it for them. Just to let you know, this is not that common. Of course, you feel bad because your sick and needed ostomy surgery. That's alright, for a while. You'll smile again. I'm sure of it. The sooner your able to begin a healthy adjustment, the sooner you'll come to accept your new life. Most of us want complete independence. We got a new life, and we're going to do it right this time.

Do go to local, regional and national UOA ostomy meetings. This may be the only place where you may talk to others plainly, openly, without anybody wincing, about any ostomy issue. Some people have serious health issues that are still there to support others about their individual problems. You'll be surprised at the ease with which you can discuss ostomy issues, once you're there. Or if your shy at first, you may just want to listen to the program and advice presented. There is much good advice shared. Not only that, but whenever we get together with other ostomates, we somehow have a good time. I don't know why, but I always feel better that I came.

Bring family members with you to the meetings. It is important to have them understand ostomy issues and potential solutions. It is good to expose them to other ostomates. They may receive some insight regarding the benefits of living as an ostomate. Let's be honest. If we didn't have surgery, we'd probably be dead or near death and in terrible pain. The people that love us would rather see us alive, without pain. An ostomy is more our issue that anyone else's anyway. But is good to share it with them. It will make you feel better to have the support and understanding of someone close to you, and it will help them to understand your new life.

A special note to new ileostomates, if you are concerned that your ileostomy seems overactive, think back if you can to the coal stove. The more coal you put in, the more heat it gave. Your ileostomy works in much the same way. The more food you stuff yourself with, the more active your ileostomy will be!

How Does an Ostomy Affect You?

By Robert H. Phillips, Ph.D.

Each person is unique and deals with the circumstances surrounding ostomy surgery in a different way. You need to analyze your situation to determine how to best live with your illness. Because having ostomy surgery affects different people in a number of ways, you may experience some or many of the following concerns:

· Interference with daily activities;

· Interference with physical functioning;

· Changes in lifestyle and/or personality;

· Emotional reactions such as depression, anger, anxiety, helplessness, or guilt;

· Changes in relationships with family members;

· Alteration in your social life; Interference with your sleep;

· Feeling that you have less control.

What can you do? Your ultimate goal is to take charge and live a happier life, despite having an ostomy. Here are a few strategies that can help you better handle your ostomy and improve your overall health, happiness and productivity.

1. Be a person—not a patient. Make this the foundation of your thinking. You are a person who has had ostomy surgery, not an ill person. The only time you are a patient is when you are in the doctor’s office or the hospital. The way you see yourself living with an ostomy is an essential part of coping successfully.

2. Understanding the unique way that your ostomy affects you and your life. Identify the ways that your ostomy causes problems for you. Are you experiencing any problems with the pouch system, leaking, odor, skin breakdown? How does having an ostomy affect others around you? Does it limit your activities? There are many other factors that may affect you. You’ll want to identify them and determine how you’re going to deal with them.

3. Set overall goals for improving your life. You’ll find that your efforts can include many of the following:

· Improving your ability to cope with a situation;

· Setting reasonable, realistic and achievable goals;

· Aiming to control your life; Improving day-to-day functioning;

· Improving your perspective on any problems you may be facing;

· Being more assertive and taking an active part in your healthcare (including dealing with medical personnel);

· Accepting and improving your ability to deal with the emotional consequences of your ostomy;

· Increasing your ability to handle negative emotions;

· Focusing more on your strengths and diminishing the impact of weaknesses or limitations of having an ostomy;

· Doing things that you like and spending less time on things you dislike;

· Enhancing positive relationships;

· Improving participation in your social network;

· Improving your life satisfaction and quality of life.

4. Pinpoint what you need to help improve your life. Think about all the difficulties you have living with an ostomy. Write these down on the left side of a folded piece of paper. On the right side, next to each item, write down things you can do to improve each one. Note as many alternatives that you can. Ask others for additional ideas, especially if you are not sure what to do about certain things. Keep adding to your list and plan how you will use these ideas to improve your life.

5. Anticipate the negative. There are negative things that can happen during life with an ostomy, but some of these things could happen if you didn’t have an ostomy! The more you anticipate and prepare, the better you will cope. Isn’t this true of us all—ostomy or not?

The Most Asked Question

-- Pensacola Stoma Gram

The most frequently asked question is: What is the correct way to empty an ostomy appliance—regardless of the type of ostomy?

So many ostomates want to make this so complicated and unnatural.

· Some kneel on the floor in front of the toilet....

· Others take off the pouch, empty and then rinse it in the toilet bowl.

· Some remove the pouch, empty it in the toilet and then wash it in the sink....

· Still others fill the pouch with water, swish it around and then empty it again.

We could go on and on about the way pouches are emptied. Name it and it has been done before.

Why not make life as easy as possible. Make pouch emptying as natural and stress-free as a normal trip to the restroom. When the pouch is less-than one-third full, empty it. Otherwise, the weight may cause tension and loosen the adhesion of the appliance resulting in leakage.

Throw away the syringes, plastic bags, tin cans and whatever else it is that you use. Maybe the nurse at the hospital told you that you had to wash it out or that you had to kneel or face the toilet. But think about an easier system.... One suggestion when using an open-system is:

· Sit on the toilet with the pouch between your legs.

· Lean forward.

· With the enclosure clip on, turn the contents upward away from the body.

· Remove the clip carefully, aim the end of the pouch into the toilet and empty.

· Wipe off the end of the pouch with toilet paper. Refasten with the clip and ... presto!

Editor's note: Place a removable clip away from harm's way when emptying your pouch. The top of the toilet paper dispenser, inside your watch band, between your lips, etc., all work from time-to-time. Always carry a spare pouch clip with you when you will be emptying away from home or are traveling. Take your time when refastening the pouch clip as you may be more apt to fumble the clip into the toilet when you hurry.

Also, there are ostomy washing systems that attached to your household plumbing that make rinsing out a pouch fast and easy. These are excellent products and offer a fresh alternative.

Poor Ostomy Management Ideas

Adapted By The New Outlook

The following are poor procedures we found some people implement to manage their ostomy system. They are not recommended because they will yield less than optimal results. Sometimes we all do things that seem logical at the time but inadvertently lessen our quality of life.

· Using alcohol regularly to clean the peristomal skin. This may result in itching, skin irritation and damage to sensitive tissue.

· Wrapping the drainable pouch tail around and around the clamp before closing it. This will not make the clamp work better. All it will do is spring the clamp out of shape. Replace you old clamp with a new one every month.

· Wearing an ostomy system for as long as you can until it leaks. The actual goal is to change the appliance before it leaks.

· Using the same pouch too long. Seven days is the maximum recommended. Pouches become saturated with odor which cannot be removed.

· Ignoring skin problems. Always treat any skin irritations when you change your ostomy system. Barriers covering damaged areas are made to actually help heal them if used properly.

· Let the pouch get full before emptying it. Excess weight will separate a two-piece system and will also put too much weight on the skin barrier resulting possibly in multiple problems. Empty the pouch at least when it is about one-third full.

· Not wearing seat belts in a car. A well placed and adjusted seat belt should not cause a major interference with stoma function or damage your stoma. In an accident it is possible that your stoma is injured, but it is much easier to repair a bruised stoma than a crushed skull.

· Living with unsatisfactory ostomy management. If you are unhappy with how your ostomy system works, make an appointment...now with an ET nurse. Most ET’s really have great ideas.

· Not coming to Chapter meetings. Once you figured out this thing, sharing with others turns out to be a surprisingly good way to keep yourself proactive and happy.

Life as an Ostomate

--Vancouver Ostomy Highlife

Will you bulge?

No. Actually, without a part of the intestine or bladder, and its contents, you should have a flatter tummy than before. You can expect to wear, with little exception, what you wore before—and this includes tight clothing and bathing suits.

Will you smell?

No! Those with ileostomies and urinary diversions will be fitted for appliances which are completely odor-proof. Colostomates can control odor with diet. Or, just like ileostomates, use an odor-barrier type ostomy appliance—like virtually all that are now sold.

In addition, for all ostomates there are deodorants for external use and odor-reducing compounds to be taken by mouth, should they be needed. I have never met a smelly ostomate.

Will you make noises?

Everyone produces gas. Normal people release gas about 15-20 times a day. Air-swallowers produce even more.. But you don't make noises so often that you can't pretend that your stomach is growling. Be the fastest elbow in the West, or wear a two-way stretch binder, girdle or pantyhose to muffle the sound when it is audible. Avoid skipping meals, gassy foods, drinking through a straw and chewing gum.

Will you feel the waste discharge?

Sometimes, very little. The intestines have no feeling, but fecal ostomates will on occasion feel the peristomal skin move because of peristalsis. Colostomates usually are aware of intestinal movement when it happens.

Those with urinary diversions probably will be unaware of kidney discharge. The ileostomate or urinary diversion should check his/her appliance occasionally to see if it is full, or he/she might find his/her pouch sagging—like a cow in udder misery needs to be milked.

Will you be a captive of the toilet?

At first you may find yourself spending more time than usual in the bathroom. Soon you will become efficient with the management of your stoma. Then your routine will not involve any more time than normal bathroom visits, except for the few minutes used in changing the appliance or irrigating. Plus, there are a great many manufacturers inventing better equipment every year. Make sure you stay informed about the state-of-the-art in ostomy care.

Will you starve?

No. In fact, make sure you don't get too fat. Follow you doctor's orders at each stage of your adjustment. Some ostomates will be able to eat and tolerate just about anything. Others may find difficulty with some foods. Each person is so individual in his/her tolerance of foods that he/she must determine what is best by trial and error. All ostomates must drink plenty of the proper fluids.

Will you be a social outcast?

No. I have never met any outcast ostomates and don't know anyone who has. Why would you be the first one? If you don't smell bad, bulge, make rude noises and dwell in the toilet, what is to make you obvious and repulsive? Only your own attitude—your morale—will affect your companions. No cheerful, brave and triumphant person will be an outcast just because of an ostomy.

Health Care & Ostomies

By Peggy Christ, RNET and Ed Gambrell

What do health care personnel need to know about ostomy surgery? Communication is the key.

Now that you have an ostomy or an internal diversion, some changes have occurred in the normal routines of life. This is especially true of medical treatment and hospitalization.

Some medical and hospital assumptions and routines applicable to non-ostomates may no longer apply to you. For your comfort, well-being and in some instances, your health and personal safety, it is important that you know how you need to be treated differently. You need to communicate this information appropriately to doctors and medical attendants who need to know.

Your doctor, ostomy nurse and others who normally attend your ostomy are no doubt well-informed of the differences in treatment you require and will help you communicate with medical personnel uninformed about ostomy matters.

The fact that some health care personnel may be uninformed is quite understandable. The staffs of the thousands of hospitals in North America see relatively few ostomy patients. Few nurses and other hospital attendants have ever cared for an ostomy patient. And many of those who have are not aware of the different types of ostomies and the special considerations each requires.

Doctors have become highly specialized to bring more expert care to patients. Therefore, many rarely have the occasion or the time to develop expertise in ostomy, which is very much a specialty in itself.

So don't be shy about communicating your condition and its special requirements to all who attend you for non-ostomy ailments. This is for their benefit as well as your own. If strong insistence should fail to bring about understanding, you have the right to refuse any procedure you consider harmful to yourself.

Dr. Marshall Sparberg, author of the excellent book Ileostomy Care and a frequent writer on ileostomy matters, has this to say:

It is within the individual patient's right to refuse any hospital procedure, and no amount of insistence from an uninformed individual should change this decision.

Ostomies are different. One of the most serious misunderstandings is that all stomas represent colostomies, and that all colostomies are the same. This can be disastrous for the patient who has an ileostomy or urostomy. It can cause trouble for the person with a transverse colostomy when treated as a sigmoid colostomy. In addition, even those with the same type of ostomy require variations in care and treatment. Ostomies vary greatly in nature just as individuals vary.

Irrigations and enemas: Those with urostomies should never be given an irrigation or enema through the stoma. An irrigation could cause serious kidney infection and damage.

Those with ileostomies should never be given an irrigation unless a doctor, ET or other expert gives one to break up a blockage, or for other compelling reasons. An irrigation or enema of the small intestine may cause the ileostomate ill effects. However, a colostomate may require irrigations; this poses no danger if it is done properly.

A stoma is not an anus. Some medical attendants do not realize the difference between a stoma and an anus. The may treat a stoma as roughly as they treat an anus. If an enema or irrigation with a catheter is involved, care must be taken to avoid bowel injury. Some catheters, though streamlined on the end, are stiff and should not be inserted into a stoma unless performed by a physician or ostomy nurse. A cone is much safer, easier to use and does a better job than a catheter.

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