A lifeline after surgery

Support group reaches out to those learning to cope after ostomy surgeries

This article was inspired by members of a local ostomy support group who reached out to Golden Times. They wanted to share their stories about living with a medical condition that can be frightening and lonely — and to let other survivors know help is available from people who have walked in their shoes.

By KAYLEE BREWSTER GOLDEN TIMES

All medical issues are personal. Often they’re painful and traumatic, and many people closely guard information about their health. But life-saving ostomy surgery adds complexity to an already-sensitive subject.

“It’s a lifestyle change is what it is. You end up with a completely different lifestyle that you have to adhere to whether you feel like it or not,” said Adrian Wilson, the president of the Colostomy, Ileostomy, Urostomy Support Group in the Lewiston-Clarkston Valley. “And it’s very easy for people who don’t know what to do or don’t know how to handle it to isolate — and that’s the last thing you should be doing.”

Survivors must adapt, changing their diets, physical movements and clothing. Something as simple as going to the grocery store requires careful planning. To help navigate those challenges, area support groups stand ready to help.

Ostomates — the name for people who’ve undergone ostomy surgeries — can feel isolated, ashamed and dirty, according to Wilson.

“So it’s very brave for someone to come to the meeting. We try to make it as easy as possible, but it’s not easy.”

An overview on the United Ostomy Associations of America website ostomy.org describes ostomies as “a change in the way urine or stool exits the body as a result of a surgical procedure. Bodily waste is rerouted from its usual path because of malfunctioning parts of the urinary or digestive system.”

A prosthetic “pouch” or “ostomy bag” is then attached internally or externally to collect waste. Sometimes it’s temporary, other times permanent.

“This isn’t something you go talk to everybody about; it’s very private,” Wilson said. “Even though all of us are in the same boat because it saved our lives — there isn’t one of us (that) it didn’t save our lives — still, it’s hard to go into this group.”

At meetings, an ostomate will find out “you’re not alone,” Wilson said. “Any question you have you can ask and it will get answered.”

“It just makes it to where people have hope. And that’s what you need — you need hope.”

Birth defects, cancer, diverticulitis, incontinence, ulcerative colitis and Crohn’s disease are examples of the many types of conditions that can necessitate an operation. Three types of ostomy are: l Colostomy, in which a portion of the large intestine and/or colon is removed; l Ileostomy, which is the removal of sections of the small intestine; and l Urostomy, in which the blad- der and sometimes the urethra are removed.

Wilson had her ostomy procedure 10 years ago. When she was diagnosed with cancer, she learned up front that she would need an ostomy bag after surgery.

“I had it easy compared to most people,” Wilson said. “I was blessed because I knew right away. I knew what it was. I knew going into it, ‘This is what I’m going to need.’ I knew it was going to be permanent going into it, this was a foregone thing.”

That foreknowledge enabled her to prepare mentally and physically. She was able to set up the supplies and care she would need after surgery — which isn’t the case for most ostomates.

Many times people leave the hospital and are left to take care of themselves with no assistance, Wilson said. That’s where the support group comes in. The group helps with training and supplies and also helps people navigate the emotional and mental ups and downs after the surgery.

Wilson said feelings of anger and depression are common.

“This is a loss; it’s something new,” she said. “They have the stages of grief to go through along with the health issues.”

With their permission, Wilson shared with Golden Times the following stories of other area ostomates.

Andy Andexler was sick for weeks, had pain in his leg and was sleeping a lot. Doctors discovered an infection and he got surgery immediately before an intestinal rupture. He was given a 40% chance of survival. He spent three weeks in the hospital and then went to rehab.

When he returned home, Andexler didn’t know how to care for his stoma — the stomach wound where the ostomy bag attaches — or his pouch, and he and wife were scared and frustrated.

The support group showed them how to change the pouch and got them extra supplies.

Angelo Lussaro, had an ileostomy to fix an intestinal blockage. He was fortunate to have a relative who knew how to take care of the pouch, but it kept leaking because he was using the wrong appliance.

Janet Scheelke has been an ostomate for 53 years, Wilson said, after getting ulcerative colitis when she had her fifth child. When she moved to Lewiston she was driving to and from Spokane to attend a support group. She then started the support group for the Lewiston-Clarkston

August Frank/Golden Times

AdrianWilsontalkslastmonthaboutwhatit’slikedealingwith ostomy at her home in Asotin. She underwent the life-saving surgery 10 years ago after being diagnosed with cancer.

R If You Go

WHAT: Ostomy support groups.

WHEN:

 12:30 p.m. the second Monday of each month in the Lewiston-Clarkston Valley.

 5-6 p.m. online the first Wednesday of every month on the Palouse.

WHERE: Canyons Church,

Valley and it’s continued for 40 years. She has also held various leadership roles over the years.

The support group invites nurses to meetings to learn the ins and outs of ostomy bags so they’ll be able to train and assist others. Presentations cover topics like diet and proper exercises. Group members are even willing to go to people’s homes to provide training and deliver supplies.

Small-group discussions, broken down by type of ostomy, give meeting attendees an opportunity to share in a more personable way, specific to each member’s experience. Family members and caregivers also can attend meetings.

Common lifestyle adjustments ostomates face include: ropes. Wilson said it took her two years to perfect her pouch use.

 The shape of an ostomate’s stomach wound can change over time, requiring a change in supplies.

“You have to stay on top of that. It changes as you go — it does. The whole system doesn’t stay static, it changes,” Wilson said. “And I think that’s another reason for the support group is because you can be 14 years into it and then suddenly something will happen and you need to change your whole system.”

In light of the many challenges, Wilson emphasizes perspective.

“It’s a life-saving procedure and that’s what we learn to focus on. As ostomates, we are here today because of this.”