Presented at UOA Convention
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, have worked 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 feelings that follow major surgery and to help alleviate the sense 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, 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 vs. 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 vs. 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 feel is preventable. In the world of ostomy compare a person with an ostomy due to Crohn’s disease to a person who just had 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 occuring. 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, 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 experienced three factors that exacerbated the trauma-expectedness, preventability, and, natural loss vs. 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.” And thus 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 himself, “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 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 onlies” was “I might not have had toxic megacolon 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 onlies” 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 5 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, that 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 5 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.
Here 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 then got back to their lives. A year later, however, many of these symptoms were gone 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 objects overhead, anger, guilt and grief.
They 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 Parents 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 makes it difficult for us to reveal our surgeries to others and this gives us a greater sense of loneliness or feeling separate or different.
You know, at one time -just 20-30 years ago, women with breast cancer couldn’t talk about 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 circumstance. 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 humour and laughter to deal with their surgeries and I cherished the opportunity to talk openly with people who have “been there-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 TV and seeing something particularly uplifting. It could even be particularly well written Hallmark card. As the philosopher Nietzche 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 gave you the courage to move on.
The 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 have, 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, oh, by the way, I almost forgot- I have an ostomy.”
Trauma also affects us by undermining 5 basic human needs: the need for feeling safe, need for trust, need for control over one’s life, need to feel valued and have self-esteem, and the need to feel close to others. Take amoment now and think aboutwhat were some of the first things you worried about when you heard you were going to have an 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 know? How will this affect activities-sports, traveling, 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 appliances fall off? Will I have leaks? How will I handle them?
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 and 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 because 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 can’t 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 and 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 things 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 challenges facing you. This is not uncommon in people with diseases or surgeries, and most 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 and we often cannot acurately 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 also can control their reactions to events. People with medical illnesses will often take back control by learning everything possible about their illness (such as attending a UOA conference or chapter meeting), will work closely with their physicians and ET nurses, will learn how to use their appliance so accidents are rare, and will look for the positive aspects of their bad experiences. Finding the answers to many of the questions posed above will help give a new ostomate a significant sense of control. Many folks use humour 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 safe and more trusting.
Now let’s talk about self-esteem. A factor affecting our self esteem is whether or not we feel valued. People with chronic medical conditions often feel that they have little value to others as 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 meet medical expenses and feel like a burden. And 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, we spend time with our families and those we love and that increases our self-esteem. Remember that some of our first thoughts on hearing about having ostomy surgery were related to self-esteem issues-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, that we could usually control odor, we learned to manage our appliances efficiently, we could go back to snowboarding , waterskiing or even play football. In fact, we can participate in almost any activity we want to. And many of us achieved 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 relationships 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 supportive family, friends and co-workers, people often still feel isolated and 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 and they are aware of 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 for our friends and family, someone they care for has gone through a major surgery that most people have little understanding of. 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 lifetime habit in going to the bathroom. 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 contend with.
Second, is that we need to reach Phase Three and react to our loss. We need to feel 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 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.
Last –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 you have taken control of your lives, are seeking information and have chosen to get information by relating to other 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 have become stronger will become part of your local vistor’s programs to give warmth, information and support to those just beginning to deal with their ostomies.
A Gift of Hope: How We Survive our Tragedies: Robert L. Veninga Ph.D., 1985, Ballantine Books
Head First: The Biology of Hope and the Healing Power of the Human Spirite; Norman Cousins, 1989, Penguin Books
Learned Optimism; Martin Seligman, Ph.D., 1990 Alfred A. Knopf, Inc.
Life After Trauma: A Workbook for Healing: D. Rosenbloom, Ph.D., & M.B. Williams, Ph.D., 1999, Guilford Press
Minding the Body, Mending the Mind: Joan Borysenko, Ph.D., 1987, Bantam Books