On Losing One’s Bladder
What happens when the physician becomes the patient? What happens when the physician is a urologist and the disease he has, is something he’s treated before?
Joseph Salisz can explain what happens because he’s been there. He describes his profession, “I fix plumbing problems.” And the “ironic twist,” as he puts it, is that he had a “plumbing problem.”
On Being a Physician
/h1>One Sunday evening in 2010 he got a phone call that transformed him from a confident surgeon to a patient. “My family doctor called me and said I have a blood test problem…” His doctor told him that his PSA was 28. Prostate Specific Antigen (PSA) is a test for prostate cancer. In 2009, Joe’s PSA was 1.6. His reaction was, “I don’t believe it, let’s repeat it.”
“Surgeons are a special breed of physician….” Joe explains. “You…pay me to take things out, things that you are accustomed to…you…pay me to sew you back up….” Because of this trusting relationship, “I have to be in charge,” Joe continues, “…my confidence sometimes comes off as arrogance but who wants an unconfident surgeon?” He shares a surgeon’s adage, “A surgeon should be confident, have steady hands and have clean fingernails.”
His demand to repeat the PSA test was the last time he was in charge of his “plumbing problem.” The repeated PSA was 29. A biopsy confirmed prostate cancer that had invaded his bladder.
On Becoming a Patient
Joe found himself in a hospital linked to an IV pole, catheterized and prepped for surgery to remove his prostate and bladder. “This is a weird position,” he relates, “I’ve never not been in control. I’ve been doing urology for 22 years and prostate cancer was an illness I was accustomed to treating.”
Joe’s physician-to-patient metamorphosis included the removal of an essential body part—the bladder. The bladder is the receptacle for urine in your body. “You need your bladder to get urine outside of your body,” Joe explains. So what replaces your bladder when you no longer have it?–A stoma and a bag.
Joe had what is called a urostomy. The colon and the ileum (or small intestines) are two other organs in the body that when diseased may have to be partially removed and intestinal waste products rerouted: these are called colostomy and ileostomy respectively. In many of these operations, an opening is made in the abdomen for the waste products of the body, (urine for urostomy and stool for colostomy and ileostomy) to leave the body. The opening is called a stoma and the person’s waste products come out of the stoma and go into a plastic bag that attaches directly to the skin around the stoma.
On Being An Ostomate
Needless to say, it is transformative, and not in a good way. “What a body change! All of a sudden I go from a nice svelte surgeon with great abs to somebody with a hole through my abs and something red sticking out…and that’s not normal.” Research on the quality of life for ostomates (people with ostomies) finds that ostomates are likely to have a poor body image. In addition, they don’t feel confident, they avoid intimacy; they worry about leaks and odors, and basically drop out of the mainstream.
There are 100,000 new ostomy patients in the United States per year ranging in age from newborns to elders.
Joseph came home with a plastic bag attached to his abdomen and soon experienced this. “How can I be a physician? How will I be me?” Just one example of the impact of the body change on Joe was that he didn’t feel comfortable changing in the gym. He hated the sensation of a bag bouncing around on his abdomen so he stopped running. He lost confidence in himself.
Joe describes the bags this way. “These bags are sweaty…they feel wet, you don’t know if you are leaking…they’re scrunchy…they make a crazy sound when people hug you…and I needed a lot of hugs at the time…they’re odorous…and they are unsightly, they make a bulge in your clothes….”
Joe readily describes the support that he receives on a continuous basis from his family and his community. His wife started looking online for products that would cover the bag and make it easier for him to get back to his “old self.” Unfortunately the covers she found just didn’t do the job.
On Healing a Healer
Luckily Joe lives in western Michigan, a manufacturing center of the country. He brought his problem to a friend in the textile business whose specialty is material that is carbon impregnated. When the carbon is activated in the cloth, it adsorbs odors. It also wicks away the sweat and moisture that is trapped around the bag, reducing the risk of skin breakdown from bacterial or yeast infections.
So with a group of friends, Joe transformed from patient to an e-patient (engaged, enabled, empowered) inventor—the result is StomaCloak.
“I really like my new StomaCloak. It is especially nice after swimming or bathing. It somehow wicks away the moisture as well as protecting my skin. It fits over the whole pouch and is very comfortable. It also gives me a secure feeling in case I might have a leak, so I even wear it to bed.”
“So I purchased one last week…I do not have a pronounced smell problem, but this Cloak seems to regulate the temperature and I do no longer get that cold wet feeling, thinking I have a leak, but a constant warmth. I am ordering two more of the StomaCloaks today…”
“Right now StomaCloak is doing everything that it is suppose to be doing. I’m an Ileostomy and have tried every filter that the ostomy manufactures have offered and can say that I get two days wear time before my clothes start getting soiled. With this now I get 7 days wear time out of my pouch. So far this is working out great.”
Perhaps Joe’s favorite is a letter he recently received from a mother of a 16-year-old teenager. He had a colostomy for Inflammatory Bowel Disease and was feeling awkward about his stoma. His mother bought him a StomaCloak and with the StomaCloak, she wrote, “he’s been confident enough to ask a girl to the prom!”
Now that’s what StomaCloak is all about.
The content of this post is based on email correspondence and on a TEDX presentation at https://www.youtube.com/watch?v=jetnnOwcSrI with permission from the presenter.
Kathleen writes at Medivizor’s blog, Health Communication and Health Advocacy, The #HCHLITSS Tweetchat and for Legacy DNA Marketing Group.
First posted on LinkedIn