Florence of Schenectady recalls coming down with a terrible stomachache countless times while sitting at the dinner table with her family.
“I’d get this terrible pain and have to run to the bathroom,” recalled the 78-year-old woman, who has Crohn’s disease and asked that her last name not be used. Crohn’s disease is an ongoing disorder that causes inflammation of the digestive tract. “If I passed a lot of blood, I’d end up in the emergency room, and they’d admit me because I was dehydrated. It wasn’t a very pleasant thing to go through.”
Twenty years ago, when Florence was 58, she had an ileostomy. An ileostomy involves bringing the ileum (the last portion of the small intestine) to the abdominal surface. When waste matter reaches the ileum, it is liquid; so a bag or pouch is needed to collect it.
Ostomy, colostomy and ileostomy and the images they convey, produce dread in many people who know very little about them. When the physician first mentions an ostomy, most patients have negative feelings. There is probably no surgical procedure that produces more misunderstanding and fear than an ostomy.
Change in body image
An ostomy is a surgical procedure that creates an opening on the abdominal wall for waste products to move out of the body or urinary tract, explained Terri Pittman, adult nurse practitioner certified in wound, ostomy, incontinence nursing at Ellis Hospital.
“The change in body image is the number one issue that a patient with an ostomy has to deal with, because it’s different from what they are used to,” said Pittman. “No one wants to walk around with a bag on their abdomen. They are afraid somebody will notice or it will leak. But once they go through the grieving process, they need to learn how to take care of it.”
Pittman said the goal is to get a flat, dry surface on the abdomen to get the seal — or wafer — to stay on to the skin.
“The wafer goes on the surface of the skin, and the pouch connects to the wafer so that the stool can be emptied,” said Pittman. “Sometimes we have to fill in little nooks and crannies with different products so we can get a flat surface.”
One of the most common problems people have is trouble getting the wafer to stick, which irritates their skin.
“Sometimes we have to use wafers with different characteristics to help the stoma pop out a little more into the pouch to drain properly,” Pittman explained.
Normally, the pouch and wafer are changed one or two times a week, depending on the plan developed with their health care provider.
“Having an ostomy doesn’t preclude you from living a normal, healthy lifestyle,” said Pittman. “You can do anything you did before the ostomy was created, like swimming or golf.”
In time, the patient usually finds that life is only slightly altered, if at all. Most would rather have the ostomy than their previous medical conditions, said Pittman.
Other than giving up bowling because of three hernias that had to be repaired, Florence said she leads a normal life.
Three years ago, she had her ileostomy moved from her right side to her left because her stomach wall was weak.
“At first, I had some leakage problems, but I’m doing OK now,” she said. “It’s certainly not a great surgery to have, but I feel lucky that I am pain-free now.”
Patients are educated in the hospital, and most have some home care. Ellis Hospital also has an outpatient office for people who are having ostomy problems.
Some people have to be careful what they eat, especially things like seeds or nuts that can cause a blockage. Some also must avoid foods that cause gas.
Ileostomy patients also have to be careful if they get diarrhea, they can easily become dehydrated.
Most people do not need to alter their clothing after surgery other than to wear clothes that are not too tight around the stoma.
“The majority of people do very well, especially people who have been miserable with Crohn’s disease or colitis, who knew they were having surgery,” said Pittman. “The most traumatic thing is for people who go in for an emergency problem, and all of the sudden they wake up with an ostomy.”
Richard, 79, of Niskayuna, was 56 years old when he had an ileostomy after suffering for 18 months with ulcerative colitis.
“They tried drug therapy with a lot of prednisone, but there were a lot of side effects,” recalled Richard, who was hospitalized for six weeks and asked that his last name not be used.
When the disease came back a few months later, the retired engineer from General Electric decided to have an ileostomy at the Lahey Clinic in Burlington, Mass.
“I had lost 50 pounds and was out of work for six months altogether,” Richard recalled. “It was awful.”
Other than avoiding popcorn and raw leafy, vegetables, Richard now eats normally, though he said it took him about a year to get used to caring for his ileostomy.
“One of the big problems is keeping the wafer stuck to your skin,” said Richard. “It’s prone to coming loose if you’re not careful when you put it on, and it can create quite a mess. So putting it on reliably is the most important thing you have to do.”
Now that he has a technique worked out, Richard said he regards his ostomy as no more of a nuisance than wearing glasses. He plays golf in the summer and swims twice a week in an indoor pool all year.
He advises that people with new ostomies contact a support group for educational and emotional support.
Pittman explained that the artificial opening to or from the intestine on the abdominal wall created by a surgeon is called a stoma. Stomas may be temporary to allow another part of the intestine to heal, or permanent. If they are temporary, another operation is required to close them.
Stomas are carefully put on the abdominal wall so they can be hidden and yet still function.
With a colostomy or ileostomy, a special plastic pouch or bag held to the body with an adhesive skin barrier is attached to the site that collects the waste to provide secure and odor-free control of bowel movements.
The opening on the abdominal wall must be well cared for because bowel contents can irritate the skin, which results in ulceration and infection.
“Ileostomies are the most difficult to deal with because the opening is created higher up into the gastric system, and there’s a lot more enzymes and liquid in the stool,” said Pittman. “It’s caustic to the skin when it comes in contact. So if you don’t have a good seal, you can have a lot of problems getting the pouch to adhere to their abdomen. But it’s not that difficult once a patient gets past the whole idea of having to empty a pouch.”
Stomas are commonly necessary in sufferers of inflammatory bowel disease, including Crohn’s disease and ulcerative colitis. They are also formed during operations for bowel cancer, diverticular disease and after accidental damage to the bowel wall.
“Having an ostomy is a major body alteration,” said Pittman. “Once people get past that, they usually realize it’s not really that bad.”
The Schenectady Ostomy Support Group meets five times a year at the Ellis Hospital C5 conference room. The next meeting is from 7 to 8:30 p.m. Tuesday, April 10. For information, e-mail Richard at [email protected]
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