Almost three years ago—in March 2014—Debi K. Fox faced an uncertain future when surgeons told her that they had been forced to remove her large intestine and the majority of her small intestine as the result of ulcerative colitis to save her life.
“I didn’t have a choice, of course, whether or not to have the surgery,” Fox said recently while stirring a large pot of boiling water containing lasagna noodles as she helped prepare the Wednesday evening meal at Oklahoma City, Olivet. “It was a matter of life or death. By the time they could schedule my surgery, my entire large intestine was useless, and the disease had cut off the blood supply to my small intestine. As a result, I only have a total of four-and-a-half feet of intestine in my body, instead of the normal 28 feet. The small intestine in adults is normally about 23 feet long; the large intestine is so called because it is wider in diameter, but it is normally only about five feet long. What I have now is called short gut syndrome.”
The shock of such major surgery was traumatic enough, but what came after being released from the hospital—and the lifestyle changes accompanying it—added another layer of trauma that had never crossed Fox’s mind.
Her vocabulary quickly grew to include terms such as stoma, colostomy, ileostomy, one-piece and two-piece pouches, bags and wafers—with many more to come.
“When it happened, I didn’t even think about what supplies I might need after the surgery and the ileostomy that came with it,” Fox revealed.
Finding the right ostomy appliance is kind of like finding the right pair of new shoes, Fox points out. They come in all shapes and sizes; and one size does not fit all
What was even worse, she discovered that she could not afford the post-operative supplies she needed because she had no insurance coverage.
“Most insurance companies cover part of the cost of these supplies,” Fox intoned sadly. “Medicare had classified them as DME, or Durable Medical Equipment, in the past, but they now classify them as prosthetic devices; however, prosthetic devices are generally defined as limbs, not supplies for organs.”
Fox, who has been a member at Olivet for about six months, said after her surgery, she started looking for information for herself and realized that there were probably others who were looking for information, too.
“As I gathered information, I started an organization called Ostomy 2-1-1 (www.ostomy211.com),” she said. “It’s like a Yellow Pages directory for ostomy resources and patient education. Information is broken down by category and alphabetically, just like the Yellow Pages are.”
Founded in 2014, Ostomy 2-1-1 is a 501(c)(3) charitable medical organization dedicated to providing mutual aid, pallative/whole person education and support; thus improving the quality of life to those who have undergone or will undergo ostomy or continent bowel/bladder surgery, and to their caregivers/families.
While that may sound like a large organization, Ostomy 2-1-1 essentially is Debi K. Fox.
As founder and director, Fox basically does everything associated with it, including running its pantry, which provides free ostomy supplies, not just in Oklahoma, but also across the United States. The pantry is located at Olivet, 1201 NW 10th St., and Fox distributes free supplies from 2-7 p.m. every Monday.
“We also distribute nationwide; people can fill out an application online and contribute $10 to help pay for postage, and we will mail supplies to those in need in the United States,” she said. “It’s like a food pantry, but it’s for ostomy supplies, instead.”
While some people may only have to have an ostomy for a short time, others may have to live with one for a lifetime.
“It all depends on what a person’s medical condition is,” Fox explained. “The pantry helps those who need it, no matter what their income or insurance coverage is. Many insurance policies have a minimum annual deductible of thousands of dollars, and most people can’t afford that. Supplies cost a person a minimum of $400 a month.”
Ostomy 2-1-1 also has a support group with more than 2,000 members involved. It includes ostomates, parents of children with ostomies, caregivers and those with questions about ostomies. Its name is OstoMyFamily, and its website is www.facebook.com/groups/ostomy211.
Fox does have support and help, of course, but only minimally.
“I do have people who assist me, but right now, I am the only one who visits patients in the hospitals (more than 500 hours last year) and the only one who distributes supplies
Patient education is an extremely important factor in considering the best quality of life with an ostomy. From diet to skin care to tips about traveling, Ostomy 2-1-1 “has it available,” Fox says
when people come to the pantry,” she said. “I have people who help me with the bookkeeping and accounting of donations. Some assist with administration of the website support group, others give money to help put gasoline in my vehicle to get me where I need to go and we receive donations of ostomy supplies from all over the country. I have driven as far as Arkansas and Missouri to pick up donated supplies.
“I do all of the mailings, and I can always use some more help. I get a lot of attention, but I don’t do it all by myself. If I didn’t have the financial donations and supplies, I wouldn’t be able to do what I do. The church is wonderful, too. They provide the space for the pantry free of rent and utilities. I couldn’t do it without them, either.
“I never would have chosen this road for myself. I would have been Jonah”, Fox smiled. “I have said ever since I had my surgery and started Ostomy 2-1-1, that I prayed this upon myself, because when I pray over my food, I say, ‘Bless this food to my body and my body to Your service, Lord,’ and God really has put my body to His service.
“But, it makes me feel good to be able to help people, and for those who don’t know about ostomies and what people with ostomy go through, that’s where I feel like I’m needed.
“God’s love shines through me. When I visit patients, I don’t tell them exactly the minute I walk through the door that I have an ostomy. I visit with them for several minutes before telling them. This helps to show that my ostomy is not visible to everyone—one of the psycho-social fears most people have. That makes all the difference in the world; doctors have the training and book knowledge, but they don’t live it.
“When I share my story, then the patients I visit know I understand what they are going through and dealing with. I have more than sympathy—mine is true empathy.”
