“I awakened from surgery with a bag on my abdomen, and can’t stop crying!”
This is a common situation after stoma surgery and one that requires the right response. Acknowledging that the patient has every right to feel frightened is the first step, but going further, and letting the patient know that there is a world of support available is an invaluable gift to provide.
There are a million ostomates in the United States, and stoma surgery is performed 100,000 times a year in this country. New ostomy patients, and even those with stomas for years, need to identify their emotions. There is sadness, depression, fear, anger, worry, anxiety, stress, and a sense of isolation, and these emotions need to be addressed for the patient to adapt to their “new normal.”
Whether you’re the patient, or you are supporting one who is, the key to adapting and adjusting is to remember you are not alone and to begin to understand what has happened within your body.
What is an ostomy and why does it affect your mental health?
Many do not know what an ostomy actually is, so here is a brief explanation: colostomy surgery and ileostomy surgery are to allow stool to leave the body, either from the colon or the small intestines, through a procedure that places a stoma (opening) on the abdomen. Urostomy surgery allows urine to pass from the kidneys via a stoma (opening) on the abdomen, as well. We are very fortunate that today, there are more well-designed appliances than ever before. They protect our stoma, as well as capture stool or urine output effectively.
The causes for an ostomy include cancer, organ and inflammatory disease, as well as motility issues and injury. Ostomies can be planned or happen with immediacy, and either way, emotional adjustment is key, it is believed, to acceptance and enjoyment of life. Many ostomies occur around the need for additional treatment, such as chemotherapy, immunotherapy and radiation. Cancer Support Groups are a wonderful way to focus on healing while in these treatments.
Adapting is aided by leaving previously held thoughts, such as “one is disfigured if different” and creating new ones, such as “I am so fortunate to have a life-saving surgery.”
Body image is part of our identity, so our mental health depends upon our adjustment and acceptance. Stoma surgery changes our “plumbing” but does not change who we are, our self-esteem, social life, and in general, our quality of life. In fact, many ostomates say their sense of themselves is actually improved because they not only feel better and usually look healthier, but they know they are strong and resilient, able to make the changes necessary to enjoy their new lives.
It is also important to understand, however, that change causes anxiety, and that acknowledging the need for change (this life-saving procedure) leads to acceptance. Therapy is a wonderful augmentation to adjustment, providing the opportunity to discuss fears, anger and acceptance. Seeing growth through the eyes of the therapist is a valuable key in opening the door to better emotional and mental health. This type of self-care goes a long way to giving voice to the loss of control often times associated with a change in our body.
Taking time to accept the “new normal” is important.
Whether anxious to have your stoma surgery or awakening from the procedure with the ostomy, time will pass, and with it will be an awareness that life is not all that different.
Tips for adjusting to life with an ostomy
- Ask for support and do it regularly. If you are fortunate enough to have a family member or other caregiver, practice asking for support, and show appreciation for that gift of support.
- Find a support group through the United Ostomy Associations of America, American Cancer Society, The Phoenix Magazine, or your hospital. It is very helpful to be with people who are experiencing similar issues and can offer advice.
- Continue to deal with not only your physical health, but your emotional health, since both are intertwined. Find a therapist or mental health care provider before the signs of depression or anxiety become overwhelming.
- Practice self-care. This is never more important than when one is recovering from surgery and adjusting to a physical change in their body. Set aside time to rest, eat healthy foods, exercise at a comfortable level, learn about your ostomy and begin to appreciate this life-saving surgery.
- Remember you are in charge of your mental health as well as your stoma care, and be aware of signs both are in need of attention.
- Take responsibility for your quality of life, which leads to a better body-image, self-esteem and social life.
- Reflect back on the progress you have made in your physical and emotional adjustment.
Frequently asked questions from real ostomates
Recognize that the questions you have are most likely the same as others. The most common questions seem to be:
- Will I smell? (NO!)
- What kind of clothing can I wear? (Anything you want)
- Will people see my bag/pouch? (Nobody will ever know you have an ostomy unless you want them to know.)
- Are there foods I can’t eat? (Everyone has a different tolerance to foods, but by and large, there are no restricted foods.)
- Can I be intimate with my partner? (Absolutely!!! You will feel better than ever, and sharing your better health will bring you closer together.)
- Do I have to tell my boss I have a bag? (No, but there are many protections for you, so check the www.ostomy.org website)
- Can I travel on a plane? (Yes, TSA will screen you separately, if you desire. Check the UOAA website)
- What if I need the bathroom? (You are entitled to an ostomy identification card that mandates bathrooms be made available to you. Check the www.ostomy.org and UOAA websites.
- Is it difficult to get my supplies? (No, you will be guided by your ostomy nurse or visiting nurse)
- How can I find an Ostomy Support Group? (Ask your ostomy nurse, check with your hospital, surgeon, the UOAA, or the American Cancer Society. The Phoenix Magazine has a list at the back of the magazine, as well.
Hearing from real ostomates
Now that you are well -versed in the understanding of better emotional health, let’s follow a few patients as they cope with their ostomy surgery, and look at their emotional adjustment:
Karen is a slight woman with a history of Ulcerative Colitis (UC). For the past few years, she was in remission, depending upon medications to deal with the inflammation and ulceration of her colon and rectum. Her constant diarrhea, weight loss, and bleeding were under control, and she was feeling capable of making plans for her day-to-day activities. Her intense abdominal pain was much less frequent, and at 38 years old, she felt a bright future ahead.
Unfortunately, Karen’s joy was about to end, when the medications she relied upon no longer gave her the medical control she needed. The bleeding returned, and she was frightened. Her gastroenterologist referred her to a surgeon, who recommended an ileostomy. Her immediate emotion was the loss of control, her body image changed, her self-esteem gone. But Karen took control and did her homework. She contacted the United Ostomy Associations of America and they answered her questions, referred her to their website, and sent her important information she would digest as time passed.
Researching ileostomy surgery and realizing it was a positive option gave Karen a sense of control about her future. She realized that until her sick organs (her colon and rectum) were removed, she was in danger of hemorrhaging and had the potential to be more of a colon/rectum cancer risk. She recognized that ileostomy surgery would be a lifesaver, and she agreed to her ostomy surgery. Her surgeon felt optimistic that Karen would do well both physically and emotionally, since she had a strong feeling about a positive outcome. He had her talk with a Wound and Ostomy Continence Nurse (WOCN) to be marked for the optimum placement on her abdomen, and to discuss any day to day questions she may have. Karen asked if she would be able to have dinner with friends, one of her favorite things to enjoy? Not only did her Ostomy Nurse assure her that her social life would not change, she told her about an Ostomy Support Group in the hospital where these questions would be discussed. She encouraged her to take advantage of all they have to offer. We will meet Karen again at the group.
Roger was not as fortunate as Karen, in that he will not have a say in planning colostomy surgery. He suffers from chronic diverticulitis, an inflammation of pouches in the colon, which have caused pain, distention, fever, and trips to the Emergency Room over the years. He knows that his chronic constipation, a function of Irritable Bowel Syndrome with constipation (IBSD) may be a cause of diverticulitis. Roger is 60 years old when a bout of excruciating pain requires an ambulance to transport him to the hospital. Feverish and requiring pain medications to even speak, Roger is admitted for bowel rest. He knows that means no food or water, only intravenous fluids, to allow the healing to begin. However, over the next few days, his fever becomes a greater concern, and intravenous antibiotics are necessary. Once the infection is gone, the diseased section of the colon will need to be removed. Roger awakens from surgery with a colostomy, an outcome he knew was possible, but one he did not believe would actually happen.
Roger did not have a chance to understand the gift an ostomy could provide for him, as did Karen, since he wasn’t involved in the decision. He feels blindsighted and is fearful of how this will change his life, and how he will continue to work with “everyone knowing he has a bag!” We understand Roger’s loss of control, fear that his quality of life will never be the same, worries about stoma care, and in general, a sense of depression. Nobody will know he has an ostomy unless he wants them to know, but right now, Roger is grieving.
His mental health will depend upon his adjustment, and he needs to know there is a great deal of support available for him. The Ostomy Nurse who saw him in his room for the few days before he left for home, talked with him about an Ostomy Support Group in the hospital, but he is not ready to accept what has happened. He is angry and resentful, questioning why he has to be the one with this disfiguring operation, his body image now extremely poor? Roger does have a loving wife, however, who promises to get him to the Group, since she sees his resistance. We will meet Roger and his wife again at the Ostomy Support Group.
Ostomy Support Groups offer more than camaraderie
Whether one attends an Ostomy Support Group proactively to understand the stoma surgery they are about to have, or is attending because a physician or spouse has recommended it, there is so much to be gained by being with “our people.”
The parts of the body that are involved with stoma surgery are not commonly discussed, and we feel awkward and even foolish discussing them with others. In a Support Group, there is an acceptance and even easy banter about the body parts, as well as the stool and urine produced. A comfort level comes from sharing new issues and ideas, as well as challenges and questions openly expressed. Both Karen and Roger are able to see the advantage of being with others like themselves, and it is hoped they will continue to be part of this bigger picture. Many report that attending their first Ostomy Support Group gave them a sense of peace, a sense of control, a camaraderie they could not have imagined. They let go of their negative body image, raise their self-esteem for taking this first important step, feel healthier mentally and physically due to this self-care, and leave looking forward to the next meeting.
Getting better with Better Health
Just as ostomates need the right-fitting appliances, whether they should be wearing a one-piece system or a two-piece system, they need valuable tools for coping and their emotional well-being. They need to know that it is okay and for many, advisable to take time to adjust and accept the “new normal.”
None of us knows what we need to know until we need to know it. Keep a journal, reach out when emotions take over and sadness, depression or anxiety become too much to handle on your own. There is a world of support available for ostomates, and as we acknowledge our numbers (one million in the United States), we gain strength from each other.
- Find an Ostomy support group
- Prioritize self-care
- Work on self-esteem
- Exercise to feel better about yourself
- Deal with body-image issues
- Embrace the progress you have made in the ostomy process
If you have more questions about your ostomy, need help find a peer to talk to, or are looking for a support group, call us! We’re always availbale to help at 415-475-8444.