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New Ostomates: Depression and Grief
This article discusses an ostomate's stages of coming to terms with having an ostomy from a caregiver/family member's point of view. • Article added October 21, 2003
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Five Stages of Grief
Ostomy surgery is a life-altering event. Having an ostomy in the beginning requires a grieving process not unlike the grief you experience when you have lost a loved one to death. Many people experience the five stages of grief because, although an ostomate hasn't lost a loved one, they have lost a part of their body.
Bear in mind that a person in "ostomy mourning" may not experience these stages sequentially. No timetable for working one's way through grief exists. Someone may feel several of the stages described here but not others. Another may experience various stages simultaneously. Because one has gone through one stage doesn't mean he or she can't return to it. Each person's experience can be different. [Top]
1. Denial
When an ostomate experiences denial, their physical responses might include sweating, faintness, nausea, loss of appetite or inability to sleep, just as with any other victim of shock. The mind and emotions become overwhelmed. Some simply may not be able to deal with the reality of having an ostomy. Some with- draw from the world around them. Others may feel as though they must be having a bad dream and that they'll awaken from it.
Several important principles should be considered at this stage of the grieving process. First, it helps for the ostomate to talk about their thoughts and feelings. They need the opportunity to heal, to be taken care of. They can help those around them to be of assistance by letting those who want to help know what they are experiencing. As a caregiver/family member, you can help by encouraging them to talk openly about their grief, to talk about the circumstances surrounding the ostomy surgery.
At times like these, the support of friends and loving family is invaluable to the ostomate in distress. No matter how strong their denial is, let them know that they are not alone, that others have been there and will help share the load if given the opportunity. If possible, introduce them to other ostomates and/or seek out an ostomy support group.
At such a time, grieving ostomates often lose sight of the need to take care of themselves physically – some may not even want to learn how to change their appliance, while others do not eat or drink enough water. Caring for their health and well being is sometimes the last thing on their minds. Help them to realize that they are important, that their lives are valuable.
During times of grief, it is easy to grow emotionally and physically depleted. Those who have undergone ostomy surgery need to eat well-balanced and nutritious meals – that is, if you can get them to eat at all. Exercise, another must, is good for relieving stress build-up and discharging anger and frustration. It helps the appetite and promotes better sleep. Exercise can be as simple as a 15-minute walk several times a week. Rest is yet another way to take care of one's body. Grief is exhausting. Going without rest only compounds the difficulty. [Top]
2. Anger
Once denial begins to wear off, the ostomate's natural tendency is to want to blame somebody – anybody – for their ostomy. This anger may not be rational. If an ostomate had to undergo emergency surgery and wasn't expecting to wake up in recovery with an ostomy, then the ostomate may be angry because of the timing of the surgery or that they didn't have a chance to prepare. When they are grieving, anger might be vented toward the doctor, hospital staff, family members or even God. An outstanding way to displace anger is to try and persuade the ostomate to be of service to others. Doing so may ease their burdens and lighten the emotional load during grieving. In other words, it helps to focus on something or someone else. [Top]
3. Bargaining
The normal reaction to feelings of helplessness and vulnerability is often a need to regain control. The grieving ostomate might say, “If only I had sought medical attention sooner, or a second opinion from another doctor. If I changed my diet, maybe I wouldn't have this ostomy." Bargaining is the faint hope an ostomate holds onto at first. It is commonly combined with the first stage of grief, denial, as this is the time in which the ostomate tries to believe for the briefest of moments that they can change what has happened. Generally speaking, it is an attempt to postpone the inevitable.
Bargaining can occur with themselves, their ET/doctor/surgeon and/or with God, if they are of a religious persuasion. Often they will offer something to try to take away the reality of the surgery. This is especially true of an ostomate who's been told their ostomy may be reversible. They cling to that hope. Refuse to let go, accept. They may try to make a "deal" or "bargain" to be returned to the condition their body was in before the surgery. To be as they were before. Comments like "I'll eat better. I'll exercise more. I'll donate to charity, if only I don't have to wear this bag anymore" are common. This is a weaker line of defense to protect themselves from reality.
Sometimes illnesses take a turn for the better and a reversal does happen. The problem is that if the ostomate feels that such a reprise were somehow related to their bargaining, it can set them up to repeat the stages of denial, anger and bargaining if their health, once again, take a turn for the worse.
It is natural and normal to want things to be as they were before. Remember, promises and bargains may be associated with a quiet guilt. Allow the grieving ostomate to express these feelings and talk them out. Too many times, family and friends try to brush these statements aside and do not give the ostomate a chance to talk about their feelings. [Top]
4. Depression
Reality eventually sets in. The ostomate is confronted with the necessity to go on with life despite the pouch attached to their body. It is easy for them to begin to plague themselves with thoughts of what should have or could have been.
For many, this can be the most difficult stage to go through. Signs of depression include a feeling of melancholy, sadness, unconcern about the outside world, loss of interest in eating and sleeping, silence, and withdrawal from family and friends. Feelings of guilt, helplessness, hopelessness and worthlessness are common. Again, if possible, introduce them to other ostomates and/or seek out an ostomy support group. Sometimes a prescription for anti-depressants becomes necessary to help the ostomate through their depression. [Top]
5. Acceptance
Time is a great healer. Eventually, as the ostomate deals with their grief, they come to understand and accept that they are beginning a new chapter in life. They come to know a new normality. Because of the trial they have gone through, they become stronger and better for having faced and overcome this great difficulty. Emotional balance returns little by little, like the healing of a physical wound.
The time required for the healing process can be different for each person. Some will still feel emotions such as guilt, depression or anger. This is not necessarily negative. It just means that having ostomy surgery impacted their lives in a powerful way. These feelings are to be expected; they're normal. An ostomate will come to the point to which they're ready to accept the ostomy. The joy of life can and will return. Ostomates worldwide are living proof of this fact. [Top]
Support for the New Ostomate
Grieving is difficult work. The following are some suggestions to help you, a new ostomate, in navigating the journey through grief.
- Take time. Don’t let others rush you into “getting over” your feelings.
- Pay attention to your health. Make sure you get enough sleep. Eat a healthy diet. Go outside in the sunshine for exercise or a mild walk.
- Avoid the temptation to use alcohol or drugs to numb your feelings.
- Cry. Tears are a healthy expression of grief.
- Know that there will be good days and bad days.
- Seek out people who will really listen and understand your need to talk about your ostomy.
- Ask for what you need from others. Accept what help they offer. You don't have to do everything by yourself.
- Seek out counseling with a licensed therapist if you feel you cannot cope.
- Join a support group such as LDOA. Use the Internet and join discussion groups, e-mail lists, chat rooms and message boards dedicated to supporting individuals who have under- gone ostomy surgery. A list of such groups can be found within this site • Links: Online Support
- Not everyone's grief is identical to yours. You may share some similarities with others, but grieving is a very personal and very individual process. Everything you feel during grief is normal.
Because ostomy surgery affects many aspects of life, you may have personal and social concerns. You may be unsure about informing friends, casual acquaintances, and co-workers about your surgery. Concerns about intimacy and sexual relationships are very common. ETs are valuable resources for all concerns following surgery.
And remember, LDOA is here for you. 
Disclaimer • This site and its contents are presented expressly for informational purposes only about London & District Ostomy Association (LDOA) and gastrointestinal and/or urinary diversions in general. In no way are any of the materials presented here meant to be a substitute for professional medical care or proper attention by a qualified physician, nor should they be construed as such. Always check with your doctor or ET if you have any questions or concerns about your condition or before starting a new program or treatment. The Webmaster and LDOA are not responsible or liable, directly or indirectly, for any form of damages whatsoever resulting from the use (or misuse) of information contained in or implied by this site.
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