Psychological Health

Articles Included

· Psychological Health—Moving On

· Self Concepts and Ostomies

· The Lives I have Touched

· The Chapter Meeting

· The Ostomy vs. False Teeth

· Noah’s Ark

· Emotional Issue of Ostomy Surgery

· Why Do We Meet?

· Don’t Suffer in Silence

· Good Mental Health

Psychological Health—Moving On

UOA Convention Lecture

Lisa Caraffa, PhD

I have a doctorate in psychology and have been involved with a variety of support groups over the years. I have trained physicians and nurses in understanding the emotional issues their patients with chronic physical illness may have. I have worked with people who have had cancer of the esophagus, with the deaf and hearing impaired, and I have led groups for families of children with mental illnesses.

The most important group to me, however, was the group I joined 10 years ago following my ileostomy. This time I wasn't running the group—I needed the group. So I am talking to you today from two perspectives; one being that of a mental health professional and the other as a happy consumer of the benefits of the United Ostomy Association.

I've been asked to talk about the psychological response to ostomy surgery. I am going to be focusing on the traumatic aspects of our experiences so that those of us with ostomies and those who help ostomates will be less prone to minimize the significance of this surgery, to be less avoidant of the normal range of feeling lonely and different that ostomy surgery can cause.

Having a chronic, sometimes life threatening disease is traumatic. Having ostomy surgery is also traumatic. How we respond to this trauma and how we cope with the changes in our body image, our changes in toileting habits can affect our personal well being and our relationships with others.

The more we understand about the normal phases that people go through after traumatic events, and the more we understand the range of feelings and coping styles people have, the better we will be in understanding what our own needs are and then we will be able to help the people around us—friends and family—understand our needs and know better how to help us.

Traumatic events are different from life's daily misfortunes because they generally involve threats to life or bodily integrity, or a close personal encounter with violence or death. Certainly, ostomy surgery, whether due to cancer, Crohn's disease, ulcerative colitis or other conditions, involves major changes in body integrity and most often has occurred due to life threatening or very serious circumstances.

The amount of trauma someone experiences is influenced by several different factors—natural loss versus human made loss—the degree to which the event is expected, whether or not the event could have been prevented, and the amount of suffering experienced.

The first factor is natural loss versus human made. In general, we are more able to accept losses that are seen as "natural" rather than caused in some way by other human beings. The loss of life due to an act of nature such as a tornado, which is something we have no control over, is not quite as traumatic as if the same person died due to someone else's negligence, something we fell is preventable. In the world of ostomy, compare a person with an ostomy due to Crohn's disease to a person who just have an ostomy because their car was hit by someone who had been drinking.

A second factor, closely related to the first one, is expectedness. A person who has dealt with ulcerative colitis for 20 years and has been aware that ostomy surgery could be an option or outcome will generally experience less trauma than the person who finds colon cancer on Tuesday and has an ostomy on Thursday.

A third factor is preventability. An event is more traumatic if we believe that we could have prevented it from occurring. I once worked with a depressed adolescent who had been playing with a loaded gun with a group of his friends. He shot himself in the abdomen resulting in an ostomy; a surgery he had never heard of before, and was completely unprepared to deal with. Both he and his family were extremely traumatized, in part due to the fact that this could have been prevented. This adolescent experience three factors that exacerbated the trauma—expectedness, preventability, and natural loss versus human made.

It's natural for people to think that they can prevent bad things from happening to them. We believe we have control over most of life's events, because if we have control, then we can stop bad things from happening to us. Feeling that we can control things makes us feel safe. The problem with believing we have complete control over our lives and illnesses is that we start trying to figure out what we failed to do. We think to ourselves "if I had all that control, then I must have done something wrong." Thus, we spend a lot of unnecessary time, energy and tension thinking, "if only I had" type thoughts trying to figure out what we did wrong.

Some of this thinking can be healthy. A person who has had an ostomy due to colon cancer may say to him/her self, "I should have seen my doctor for annual checkups. If I had, we might have caught the cancer earlier. From now on I'm going to make sure I go to all checkups." In this way, he/she takes control and helps prevent future problems. However, many folks will sit and stew wondering if they had been eating Raisin Bran every day rather than Wheaties, maybe they wouldn't have had colon cancer. Or, maybe they wonder if only they had taken more Vitamin C they wouldn't have needed surgery. It's easy to stay miserable if we always are stuck in the "if only I had" type thinking.

One of my "if onlys" was "I might not have had toxic mega-colon and the surgery if only; I hadn't been working so hard; and had rested more; and taken better care of myself. Take a moment and think about any of the "if onlys" you might have thought about.

The amount of suffering involved is a fourth factor affecting trauma. Very often, the greater the pain and suffering experienced due to the illness and surgery, the greater the trauma experienced.

It is generally believed that there are approximately five phases of trauma, but I must point out that everyone responds differently. Some people may skip certain phases entirely, or go through them either very quickly or very slowly. You should also remember, some of the factors affecting trauma—preventability, expectedness and amount of suffering—all have an impact on how quickly or slowly people move through the five phases of trauma recovery. You may recognize yourselves in some of these phases.

Phase one is the time immediately after the crisis. It typically lasts a few days to a few weeks. Perhaps, you have just learned that you have cancer or have been told that ostomy surgery is needed. Many folks, during this phase, may experience feeling numb—as if they are just going through the motions—they may be tearful. Sometimes there are mood swings, anxiety (talking a lot, agitation, tense silences or withdrawal), poor concentration, forgetfulness. This is all natural. The mind is overloaded and just can't take in more information, the person can't concentrate, he forgets things.

Phase two begins with an increase in activity. We start taking control again, we make decisions, start getting our life back in order. We get second opinions, we call our insurance companies, we read books about our problems. After President Lyndon Johnson died, reporters asked his wife Lady Bird Johnson how she was able to carry out her many duties. Her answer was, "grief carries it's own anesthesia." She was aware of her numbness and her ability to just go through the motions. Phase two is deceptive because the trauma survivor, and the people around him/her, thinks that the worst is over, the crisis is resolved. Actually, this is nature's way of allowing us to meet major responsibilities in our lives. This stage may last weeks or months and delays the actual grief process.

A friend of mine developed colon cancer at a fairly young age, but after a short period of recovery, he went back to work and moved on with his life. four years later, however, as he approached his five year mark, he became very depressed for no apparent reason. He worked closely with his physician and realized that he was thinking a lot about his surgery and having had cancer. He was finally moving into the next phase, Phase three, in which anger, grief and depression are often experienced.

Her is another example. Some years ago, the skywalk in the new Kansas City Hyatt Regency fell, killing 133 people. During the first weeks after this, the survivors had symptoms of loss of appetite, poor concentration, insomnia and fatigue, but now there were more serious symptoms of flashbacks (vivid memories of the crisis), dreams and nightmares of the event, extreme sensitivity to noise, anxiety about object overhead, anger, guilt and grief.

There were moving into Phase three, which again, has as it's hallmarks, anger, grief and depression. Sometimes, people in the early stages of Phase three have directed their anger in very constructive ways, they formed MADD (Mothers Against Drunk Drivers); they formed Parent of Murdered Children; they brought forth the legislation for Meagan's Law. Being active in this positive way helps give some relief from the sense of anger, sorrow, and loss of control, but then comes the worst feeling. That of loneliness. The survivor comes to grips with the fact that the people around them can't entirely understand the experience that they have had.

I think this is a very important factor, and particularly so for ostomates. We have had a traumatic life event, but because it involves bathroom functions, we are inhibited from talking about it freely in this society. This culture has a lot of shame and anxiety around bathroom habits which make it difficult for us to reveal our surgeries to others. This give us a greater sense of loneliness or feeling separate or different.

At one time—just 20 or 30 years ago—women with breast cancer couldn't talk it because it was somehow shameful. Today, there are national marathons related to breast cancer; postage stamps honoring women with breast cancer; innumerable talk shows devote time to discussing breast cancer; and pink ribbons are worn to the Academy Awards.

Katie Couric of the Today Show has done a wonderful job giving information about colon cancer prevention and treatment, but despite this wonderful work, I still rarely hear the "O" word—ostomy—under any circumstances. We'll know we've finally made it when we have a postage stamp honoring ostomates.

Unfortunately, all of this keeps us feeling separate, different and alone … until we find each other and the UOA. I was stuck in this phase until I walked into my first UOA meeting. I saw 40 people of all ages and genders who all looked normal.

This made me realize that I had been thinking of myself as abnormal, and this was my turning point. I stopped feeling alone and different. It was also great to be with folks who used humor and laughter to deal with their surgeries, and I cherished the opportunity to talk openly with people who have "been there and done that".

Phase four often starts when some small or positive event gives the survivor hope. This could be a variety of things … for me it was the recognition that I wasn't the only person in the world with an ostomy. For others, the moment of change could start with a phone call from a concerned friend; or turning on the RV and seeing something particularly uplifting. It could even be a particularly well written Hallmark card. As the philosopher Nietzsche said, "that which does not kill me makes me stronger."

This stage begins with hope. We begin to find meaning in our lives and the healing begins. Take a moment and reflect on what turning point you may have experienced, or what have you the courage to move on.

The Fifth and last phase is the conscious acceptance of what has happened to us. It does not mean that we forget what happened, or that we pretend that it was not a significant crisis, we just find a place for it. It becomes a simple fundamental fact-of-life for us as we go on with our lives. The ostomy is in the background of our lives. It's there, but we don't focus on it anymore.

Frankly, we aren't ostomates. The term is a good, quick way to describe a type of surgery we've had. But, actually, "I'm Lisa Caraffa, I'm a psychologist, I'm a mother of a 19 year-old girl, I love traveling in Europe, I'm a terrific cook, and by the way, I almost forgot … I have an ostomy."

Trauma also affect us by undermining five basic human needs:

· The need for feeling safe

· The need for trust

· The need for control over one's life

· The need to feel valued and have self-esteem

· The need to feel close to others

Take a moment now and think about what were some of the first things you worried about when you heard you were going to have ostomy surgery? Some of the most common issues/thoughts are:

· What about sexual intimacy?

· Will I have to wear different clothes?

· Will I look funny?

· How will I manage odor?

· Will people be able to look at me and tell?

· How will this affect activities, like, sports, travel or work?

· What can I eat?

· How will I ever learn to manage all these appliances?

· Does this mean I'm well now?

· What About accidents?

· Will the appliance fall off?

· Will I have leaks?

· How will I deal with problems?

· How will I describe this surgery to other people?

Now let's go back and talk about the five basic needs and where these thoughts about fears fit in. Let's start with the first two basic needs: safety and trust. People who have had life threatening disease and surgery may no longer feel safe or feel trusting. They may feel that their bodies have betrayed them, or that they have betrayed their bodies by not eating right, or taking the right vitamins, or failing to see their physicians.

We go right back to the "if only I had" type thinking. At one time in our lives, we may have felt safe and trusting because we believed that "bad things" cannot happen to me … they happen to other people. We felt safe because we took our medicine, saw our doctors, led good lives, but this bad thing still happened. This may start us thinking about all the other bad things that can happen. We've become aware that we are not invulnerable. Bad things can happen to us too. This can be overwhelming. In order to get past this, we have to come to terms with the fact that bad thing happen randomly, and that we can still rely on ourselves and others for help and support.

Regaining a sense of safety and trust hinges on our achieving a sense of control over our lives. Loss of control is the belief that you can't solve problems and meet the challengers facing you. This is not uncommon in people with diseases or surgeries. Anyone who has spent time in a hospital fully understands what the loss of control means.

I would expect that people with cancer or autoimmune diseases such as Crohn's and ulcerative colitis would feel especially lacking in control due to the fact that we still do not fully understand what causes or cures these diseases. We often cannot accurately predict the course of the disease. In order to regain a sense of control and decrease a sense of helplessness, people will often take the helpful and rational approach that they can't control all events, but do have some control over some events, and can also control their reactions to events.

People with medical illnesses will often take back control by learning everything possible about their illnesses; such as, attending a UOA conference or a chapter meeting. They will work closely with their physicians and ET nurses; will lean how to use their appliance so accidents are a rarity; will look for the positive aspects of their bad experiences.

Finding the answers for many of the questions posed above will help give a new ostomate a significant sense of control. Many folks use humor and positive thinking as a way of regaining control. Once we have a sense of having more control over our lives, we also tend to feel secure and more trusting.

Now let's talk about self-esteem. A factor affecting our self-esteem is whether of not we feel valued. People with chronic medical conditions often feel that they have little value to others. They may have had to miss a significant amount of work, and feel they have let down their co-workers. They may have used up a lot of the family savings to pay for medical expenses and feel like a burden. People who are ill often don't have the energy for taking care of their children or being with their friends. Fortunately, for many this factor can be short-term. After the ostomy surgery, we go back to work, spend time with our families and those we love, and that increases our self-esteem. Remember that some of our first thought on hearing about having ostomy surgery were related to self-esteem; appearance; going back to work; engaging in pleasurable and satisfying hobbies; sports and activities.

Our self-esteem increased as we learned that our appearance would not significantly change, and that we could usually control odor. We leaned to manage our appliance efficiently, we could go back to snowboarding, water-skiing or even play football. In fact, we can participate in almost any activity we want. And, many of us achieve this by taking control of our lives and seeking out the UOA and getting information about these extremely important issues.

Closeness is the final basic need. As you remember, one of the first things people worried about when they heard about having an ostomy was whether or not they could be accepted by and be intimate with other people. The supportive, close relationship we have at the time of a trauma are an important factor in healing. However, traumatic experiences can challenge or change many existing relationships. Even with a supportive family, friends and co-workers, people often still feel isolated. This is especially so after a surgery that we don't feel at ease to talk about openly.

We all have the need to feel in touch with ourselves and connected to other people. A good connection is based on how well we know ourselves, and how well we accept the different parts of ourselves. After a trauma, however, we may experience different feelings about ourselves which may feel strange or uncomfortable. People in Phase one are often numb … they feel strange, as if they are outside themselves. They are aware only that they are just going through the motions but can't do anything differently.

During times of stress and trauma, we sometimes close off to the other people in our lives, unable to express our fears and concerns. Our self-esteem may drop severely if we don't accept our new bodies. If we can't accept ourselves, we certainly won't expect others to accept us. We may push our friends and family away, rather than take the risk of finding out whether or not they can accept the changes we have been through. When this happens, our intimacy with others is disrupted.

It could be that close friends and family may not be able to fully understand what you are going through which can also increase your sense of loss. They themselves may feel scared, confused, frustrated or helpless. Remember, that our friends and family, some they care for has gone through a major surgery that most people have little understanding. As I mentioned earlier, your ability to understand your own adjustment to ostomy surgery will allow you to better educate those around you as to what you are feeling and needing during the different phases of recovery, and that will help you keep connected to them.

As we come to a conclusion, let's talk about some basic processes necessary to adapting in a healthy way to the changes in our lives. First, we have to recognize the loss we have experienced and understand it. For some of us, we have lost our guarantee of good health; some of us feel the loss of a significant part of our body.

We have lost a life time habit in going to the toilet. I miss all the reading I got done in the bathroom. It may sound silly, but this was on my list of losses due to my ostomy. We have lost the image we had of our bodies prior to the surgery. We now have scars and pouches to content with.

Second, is that we need to reach Phase three and react to our loss. We need to fell the pain, accept it and express it. After that, we can move on.

Third is to remember and think through what was going on before the surgery occurred and remember our lives realistically. It wasn't perfect before the ostomy and it won't be perfect afterwards. But frankly, it's often a lot better!

I recall having talked to a woman who had had ostomy surgery and remained very bitter about it. She stated that her husband had left her because of the surgery. As we talked more, however, I found that she and her husband had had a very poor marriage, and had had several separations and talked of divorce long before the surgery. She had created a perfect past that didn't exist which kept her stuck for several years in the anger of Phase three. She finally moved on and is currently happily dating.

Lastly, we need to let go of the old ways of living and adapt to the changes in our lives. Of course, I am preaching to the choir this morning. The fact that you are members of the UOA and are here at this convention says that your have taken control of your lives. You are seeking information and have chosen to get information by relation to others people. You have found the energy to be here and want to step outside the isolation people with ostomies often feel.

I truly hope that those of you who have been through the fire and may have become stronger will become part of your local visitor's programs. We need you to give warmth, information and support to those just beginning to deal with their ostomies.

Self-Concepts and Ostomies

By Dr. Sue Bergman via ReRoute, Evansville, IN

Self-concept can be viewed as, being made up of several components:

· Work Self-Concept: How we see ourselves as workers.

· Family Self-Concept: How we see ourselves as parents, spouses, sons or daughters.

· Sexual Self-Concept: The view we have of ourselves as sexual men or women.

· Physical Self Concept: How we see our bodies.

Ostomy surgery certainly affects the sexual and physical parts of how we see ourselves. It can also have an overlapping effect on the other parts of our self concept. We have to see everything in this new light and the adjustment process may take as much as one to two years—sometimes longer.

The better we adjust, the more comfortable we will feel ourselves and the better others will feel with us. This adjustment process after ostomy surgery takes the form of several major factors:

First, learning how to use the appliance and to find the right combination of equipment. If things don’t fall into place and we don’t get the “knack” of it, if we are misguided by the wrong information, we can be thrown into a tailspin which, in turn, can lead to a state of depression which might be difficult to overcome. But, once we’ve mastered the appliance, we can go on to the incorporation of it to our entire body image and self concept—how it looks on us with or without clothes, how it feels in the swimming pool or during sexual relations and what we need in order to feel more comfortable with it; such as, special covers, etc.

The next step is the adjustment to the day-to-day aspects of having an ostomy. We have to get accustomed to our ostomy system’s presence as a constant part of our lives. For me, this was a personal challenge. I had some really rough times accomplishing the mechanical activity of putting it on. I felt like such a mess. But somehow, I overcame these feelings once I mastered the application of my ostomy system. It really is so easy to do.

For me, the hardest part was the realization that this would be with me for the rest of my life. I particularly had difficulty waking up with a full puffy pouch every morning to remind me of the everlasting presence of this thing that was now an intricate part of my self-concept.

However, as time passed, this became a smaller and less important part of my life. With each day, I felt more comfortable about my new self-image and everything in my life fell back into a clearer perspective. It was certainly a slow process for me as I am sure it is for most people, but feeling healthy again sure makes up for these small issues.

The Lives I Have Touched

By Ellice Feiveson

This is a milestone year for me, it has been almost ten years since my ileostomy surgery and ten years as a volunteer for the Metro Maryland Ostomy Society. I know in these past years I have touched peoples’ lives and I am proud of the work I do as a volunteer.

I have spoken with and counseled women who had ostomies due to Crohn's disease, ulcerative colitis (as I had), cancer and other diseases. I feel that I give my patients hope that they will live normal lives with an ostomy. It is very rewarding for me to visit a patient at home or in the hospital knowing she may be depressed, anxious or un-accepting of her ostomy, and then weeks later, via telephone calls or extra visits, find that the patient is beginning to adjust to her new lifestyle, slowly, but surely.

I must admit that volunteer work is hard, but rewarding. I must walk into that hospital room smiling, self-confident and pleasant. Whether I have numerous errands to run or appointments, it is my responsibility to give each patient my undivided attention and time, and I do.

Each patient is so different. Some patients have tons of questions for me and others barely want to talk to me—perhaps they are in denial at that moment. That is okay too. I think that the trick in being a good volunteer is to be patient and understanding no matter what the circumstances. I always remember back to when I was in that bed— sick, frightened and confused.

I have truly become a more compassionate and caring person in the last ten years. I have maintained friendships with some of my patients and counsel them through the long months of healing. One of my special patients is a young woman who lives in Washington State. She had a rare cancer and has an ileostomy. I visited her several times at the hospital and we truly bonded. She is a brave woman, smart and funny, and I hope I am helping her cope as she gets better.

I have received notes from patients and really appreciate their kind words as to how I made a difference by visiting them and caring. I have definitely been fulfilled these last ten years. Being a volunteer and helping others is wonderful because I feel like I did make a difference.

Volunteering is not for everyone. If you truly love helping others, then go for it. I know I will be continuing this work for a long time to come. Helping others is truly my passion.

The Chapter Meeting

Our Chapter meets usually once a month for our general meeting and once a month for our board meeting. Some of us also invest a day or two helping out during the month at FOW. After awhile, it seems that we keep going over the same topics, do the same activities and have the same concerns month after month.

The subject of presenting interesting programs for our meetings comes up every month. And, there are a few who think we should expand our outreach to include subjects other than ostomy matters. Some say they are tired of hearing the same ostomy issues talked about regularly.

We are an ostomy chapter. Our mission is the education, emotional support and advocacy of people with ostomies. There are not too many chapters around. A UOA chapter is one of the only source of high quality ostomy information.

Most surgeons are not familiar with the ongoing day-to-day needs of a person living with an ostomy. How many people in your everyday world know about the management of an ostomy? Plus, we only see our ET nurse for a check-up every year or two or more, and usually only when we have a serious problem.

Ostomy surgery is performed every day. We must be available to these new people. This is one of the activities that allows us to fulfill our mission. It is our hope that these patients will attend our meetings—their friends and family are also invited. Weren’t you especially grateful for our Chapter after you had your surgery?

In addition, there are so many different products made by ostomy manufacturers with these sources offering a great variety of management items. But these sources are so abundant that it would be nice if an organization could help clarify all these products. At our Chapter meetings, this information is developed and shared through discussion with other people with ostomies, our dedicated ET nurses and the manufacturers themselves. Where else could you go to obtain all this information?

We who enjoy good ostomy management do so because of the efforts of others who have taken the time to create a better world for us. They banded together and shared ideas and successes.

So, our plan is be as good an ostomy chapter as we are able and continue to discuss topics surrounding ostomy surgery. We must hold meetings and spread the word, even if we appear to be repeating the same information over again.

Always keep in mind that at each meeting there are new people who have just undergone ostomy surgery and are attending for the first time. This is all new to them.

We need your support. We have a need for new volunteers to step forward to continue the good work of our Chapter. Without you, we cannot produce quality programs on a regular basis.

The Ostomy Versus False Teeth

Thanks to Spacecoast Shuttle Blast, FL

How often have members of ostomy groups said that having an ostomy is no worse than wearing false teeth? Non-ostomates often laugh at this and can’t believe that we are being honest. Surely having an ostomy is much worse.

False teeth? Nobody looks forward to having them replace his/her natural teeth. Jokes are made about grandpa and his uppers. But thinking of false teeth as compared to that “awful surgery”? Never! Well, before folks feel too sorry for us ostomates, let’s look at the similarities:

· Everyone would prefer to keep his/her own teeth—just like his/her own colon or bladder.

· Wearers of false teeth try to act as if their teeth are real—ostomates hide their surgery.

· Some have a problem keeping false teeth in place—a negligible problem with ostomies because of the quality of the new systems.

· No one wants to hear the “click” of false teeth—no one wants to hear an ostomy gurgle.

· After a few months, false teeth feel more like a natural part of your body—also true of your ostomy management system.

· As one grows and changes, a set of false teeth may have to be changed—and ostomy systems may have to be changed due to weight gain, loss; retracting or prolapsing stomas.

· False teeth require a certain investment—so does ostomy management.

· False teeth are worn most of the time—ostomy appliances are worn most of the time.

· Products are needed to keep false teeth clean and odor-free—modern ostomy equipment is odor-free and requires little maintenance for excellent odor control.

· False teeth are a little nuisance in the mouth—at the opposite end of the digestive tract, a stoma needs regular care.

So, the next time a distressed family member says a relative will “have his/her life ruined” by having an ostomy, ask whether someone who looses all his/her teeth has his/her life ruined. If we could think of ostomies with the same calm humor with which we view false teeth, wouldn’t everybody see them for what they really are? Not really much different from false teeth.

Noah’s Ark

Contributed By Jane Michnik

Everything I need to know, I learned from Noah's Ark ...

· Don't miss the boat.

· Remember that we are all in the same boat.

· Plan ahead. It wasn't raining when Noah built the Ark.

· Stay fit. When you're 80 years old, Someone may ask you to do something really big.

· Don't listen to critics; just get on with the job that needs to be done.

· Build your future on high ground.

· For safety's sake, travel in pairs.

· Speed isn't always an advantage. The snails were on board with the cheetahs.

· When you're stressed, float awhile.

· Remember, the Ark was built by amateurs; the Titanic by professionals.

· No matter the storm, when you are with God, there's always a rainbow waiting.

Emotional Issues of Ostomy Surgery

By Julie Maloy, RN, CWOCN

Ostomy surgery may cause a threat to one’s self-esteem and a readjustment of one’s body image. Self-esteem is based on how each person accepts and values him/herself.

Fears have a negative effect on self-esteem. Some of the common fears that one who has had an ostomy may experience first after surgery are fear of rejection, leakage, odor embarrassment and a decrease in feelings of personal attractiveness. Not only can these fears lower one’s self-esteem, but, they can create a barrier in an intimate relationship.

Successfully pouch fitting; changing and caring for an ostomy system independently; open and honest communications, are the first steps necessary for restoring one’s self-esteem and returning to the previously held roles in a relationship.

There are several phases in rehabilitation from ostomy surgery. The meaning of your own personal medical diagnosis may cause an emotional impact, as well as the adapting and adjusting to having an ostomy. In the first few weeks after surgery, energy is exerted toward recovery and toward the task of mastering ostomy care. Independence, when possible, has a positive effect on self-esteem. The need to wear a pouch may cause anxiety. To minimize appliance anxiety, a pouch that is unobtrusive, odor-proof and secure is essential.

Develop a routine of changing the appliance before the possibility of a leak occurs. Check the appliance when you change for signs of wearing or undermining, such as staining under the tape or discoloration from the stoma to the edge of the pouch. Keep the tail of the pouch clean. Individual moist towelettes carried in a pocket or purse are handy to clean the pouch tail after emptying.

As one masters the task of stoma care, it is not unusual to discover that there may be a hypersensitivity to the reaction of others. Any behavior or reactions that are interpreted as negative can have an effect on interpersonal relationships, self-esteem, self-confidence and the physical competence of the person.

The person with an ostomy who can be independent yet allows the spouse to stay in a care- giver role is fostering an image of being disabled and not promoting the return of the previous sexual relationship. Good personal hygiene will help decrease anxiety and promote confidence, particularly during intimate times. Pouch covers that are plain, lace, pastels or prints are available for those who would like to cover the appliance. Taping the body of the appliance in place will help prevent pouch movement during sexual activity. A common fear of the spouse is one of hurting the partner or the stoma. Reassurance will dispel fears. Experiment with positions that will not rub or irritate the stoma. During recovery from ostomy surgery, holding, touching, caressing and kissing are all important methods of expressing affection that should not be forgotten.

The readjustment period continues for several months after surgery as each person reestablishes a suitable lifestyle. The supportive network of friends, family and health care team is important; however, the overall adjustment is ultimately the responsibility of the person with an ostomy. Patience is necessary with oneself as the process unfolds; however, if a particular hurdle seems very large, seek help to put things in the proper perspective.

Why Do We Meet?

Forwarded By The Newsleak, DuPage, IL Chapter

Ø Our presence is an encouragement to others.

Ø No matter how long ago our surgery, no matter how may meeting we have attended, there is always information—some we may have forgotten—to be gained.

Ø We are able to keep up on the newest, state-of-the-art developments in ostomy care and hear speakers with cutting edge knowledge pertinent to people with ostomies.

Ø We may have questions and problems that can be asked, answered or researched at a meeting.

Ø We give support and encouragement to the volunteers—our Chapter leaders, ostomy visitors, etc.—and to each others.

Ø We see that many of those who were in trouble are now helping others.

Ø We feel better after attending a meeting We experience a sense of accomplishment and renew a positive attitude for going out again into the world.

Ø Most of all, we are role models for new people with ostomies. We show them how good we look and how an active life may continue.

Don’t Suffer in Silence

Forward by the Niagara Frontier Ostomy Association

Remember, a whole new world will open up to you by discussing your problems with others who have experienced these same doubts and reactions. We have all gone through this period of learning to live again and in many ways, even better than before.

Bring your fears and concerns out into the open. Take advantage of the friendships and knowledge of others by coming to a general meeting of your ostomy association. That is what we are here for.

Good Mental Health

UOA is offering free telephone psycho-social consulting for people with ostomies and
their families through the services of Dr. Ron Burton, Ph.D., Social Policy.

Dr. Burton, a urostomate from Philadelphia, will provide pro bono advice for those in a crisis situation and can refer callers to local resources or continuing help. For assistance, call the UOA office at 1-800-826-0826 to be referred to Dr. Burton.

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