Tag Archive for: bladder cancer

AN OSTOMY ARMY STORY

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By Tony Plonner

Editor’s Note: UOAA is proud to recognize Veterans and supports all those now living with an ostomy or continent diversion. 

As a 20-year-old, way back in 1972, entering Army basic training was a daunting experience, the “fear of the unknown” had my mind reeling of what could happen. My approach was to take the challenge one day at a time, one hour at a time, or if necessary, one minute at a time.

We adopted many phrases to get us through the many challenges of this new environment: “Can Do!”, “When the going gets tough the tough get going” and when all else failed, “Yes Drill Sergeant!’ and we’d jump into the challenge at hand. This experience taught us we could surmount obstacles we’d never dreamed of.  Unknowingly, our training prepared us for many of life’s challenges both in and out of the military. For me, progressions to Military Police School and Officer Candidate School strengthened my confidence and allowed me to take on challenges in both the military and civilian worlds.

One basic premise I learned was to never quit.  I learned the quitter never knows how close they were to success. Whatever the challenge, you keep moving and keep fighting.

A little over thirty years ago, I was diagnosed with prostate cancer.  Surgery and radiation followed.  I kept a positive outlook and survived the experience.  Unfortunately, a couple of years ago, I was diagnosed with bladder cancer.  I was told there was a chance the radiation many years before may have led to this cancer.  As it was muscle invasive, and with a history of radiation, all the doctors involved agreed the bladder would have to go.  I had faith in my team and after a round of chemotherapy, I had urostomy surgery at the University of Miami Medical Center on March 14, 2022.

My best advice for those about to undergo or have recently had urostomy surgery for bladder cancer is to keep the “Can Do” attitude and continue with your life’s goals. You’ll be amazed how far you’ll go.

Having been told the result of the surgery would result in an ostomy, I researched as much as possible to learn about the side effects and the changes to my lifestyle I’d encounter. A pleasant result of this research was finding the tremendous support network available.  I learned about the Bladder Cancer Advocacy Network (BCAN) and through my old army buddy, Justin Blum, United Ostomy Associations of America (UOAA).

Tony Plonner, pictured riding the Florida Keys Scenic Highway has continued an active lifestyle after urostomy surgery for bladder cancer.

Reading case stories, with a bit of skepticism I’ll admit, I learned of the many people who have not only survived but thrived through this experience.  Along with my experience of tackling the unknown in the Army, and the great support of family and friends, these stories only bolstered my faith that we’d lick this cancer and continue with life.

My doctors regaled me with stories of ostomy patients maintaining their lifestyles, skydiving, running, golfing and barely missing a beat after surgery.  Combined with the experiences of ostomates I’d read about, was confident I’d go through the surgery and, despite new limitations expected on my lifestyle, I’d take the hill and keep on moving.

Looking back over the last year and a half I am astonished at how smooth, if that is the right word, the transition has been.  Beginning with the support of the team at the surgery center, who trained me in the care of my ostomy, I followed orders like a good soldier, paid attention to their instruction and thankfully have made the transition to ostomate.

My biggest concerns, changes to my lifestyle, were pretty much unfounded.  I am an avid golfer, road bicyclist, and generally an active person.  I was concerned about how my ostomy bag would affect these pursuits.  The answer is hardly. I wondered how I’d be able to go on bike rides of 15 or 20 miles in tight bike shorts and was pleasantly surprised to find it pretty comfortable. Also, it is easy to tell when I need to pull over and go to the bathroom.  Spandex bike shorts don’t provide much wiggle room!

Golfing also has been unaffected by my ostomy. I was worried about the twisting during the golf swing and any stress it would put on my appliance.  It hasn’t been an issue.  Now, if I could only lower my handicap…

My best advice for those about to undergo or have recently had urostomy surgery for bladder cancer is to keep the “Can Do” attitude and continue with your life’s goals. You’ll be amazed how far you’ll go.

UOAA is Here for Bladder Cancer Survivors

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Since its inception United Ostomy Associations of America, Inc (UOAA) has supported and welcomed members living with a urostomy (ileal conduit) or urinary diversion as a result of bladder cancer and related conditions.

Urostomy surgery is explained in a page from UOAA’s Living with a Urostomy Guide

May is Bladder Cancer Awareness Month. The American Cancer Society’s estimates about 82,290 new cases of bladder cancer United States for 2023 and about 16,710 deaths from bladder cancer (about 12,160 in men and 4,550 in women)

While this common cancer is most often treated without radical surgery a urologist may suggest bladder removal surgery to stop the cancer if a bladder tumor reaches the deeper muscle wall or resists other therapy. A urinary diversion is needed to replace the bladder. This involves using parts of the intestines to allow urine to pass from the kidneys to either an internal urinary reservoir pouch such as Indiana Pouch or a neobladder or an external ileal conduit, when a stoma is formed. An ostomy pouch is worn over the stoma to collect urine.

With surgery comes new things to learn and adjust to in order to achieve the quality of life you were used to before bladder cancer.

UOAA has over 270 Affiliated Support Groups around the United States. Bladder cancer survivors attend many of them and also serve as volunteers and leaders. Peer support and preparation can put you on the path to success in what may be a challenging time both emotionally and physically.

We recognize that those with an ileostomy, colostomy and various gastrointestinal disorders may dominate public conversations and education about living with an ostomy. Please know that the voices of urostomates and those with a urinary diversion are also supported and amplified by UOAA.

A new Living with a Urostomy Guide was launched this year and is available for free online. Created by ostomy nurses with input from a urostomy patient and a leading urologist, this trusted resource is vital to anyone who has or may have to have this life-saving surgery.

Learn about the unique aspects of a urostomy pouch and options that help improve sleep for urostomates like a night drainage bag.

Ostomy.org is also home to a guide on continent urostomies and other specific considerations.

UOAA advocates on a national level for all people living with an ostomy or continent diversion. Consider taking out a National Individual Membership to help amplify our voices and receive special member benefits along the way.

Check out our many self-advocacy tools designed to help you know what to expect and to take control of your healthcare. Learn that you matter and become a champion for the Ostomy and Continent Diversion Patient Bill of Rights.

It’s important to learn the facts about living with an ostomy. After the healing period outlined by your surgeon you can swim, bathe, travel, and embrace a new normal life. Reading patient stories from both the male urostomy patient and female bladder cancer survivor perspectives are also helpful.

Seize any opportunity to meet other urostomates. UOAA’s 2023 National Conference in August will feature special sessions and meet-up opportunities for people living with a urostomy.

People living with an urostomy as a result of bladder cancer may experience unique sexual issues. Consult with you doctor but also learn about some common issues in our sexuality and intimacy guide.

Misinformation and stigmas surrounding both ostomy surgery and bladder cancer still exist. Nonprofits like Bladder Cancer Advocacy Network (BCAN) and UOAA are working to improve quality of life with support and information. Bladder cancer survivors are an important part of UOAA, join with us to create a better tomorrow.

Micheal’s Urostomy Story

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Bladder Cancer at Age 40 and the Path to Recovery

By Micheal Heath Waid

I noticed the faint pink color in my urine in November of 2018. I wasn’t sure what to make of it, but I mentioned it to my husband and he, being a nurse, suggested I see my General Practitioner immediately.

I made the appointment to see her. Assuming a UTI, she blamed me for “wearing dirty underwear” because it’s unusual for men to acquire that sort of infection. She tested me for an infection and gave me a prescription for antibiotics. Offended by her comments, I didn’t say much else. I took the medication and didn’t see the pink again. I assumed everything to be alright.

But then I saw pink urine reappear in August of 2019. I went back to my GP. Less snarky this time, she advanced a referral to the Urologist. The normal scans followed and discovered an anomaly in my bladder. A later cystoscopy confirmed two smallish tumors. The next parts of my journey are fairly standard. A Transurethral Resection of the Bladder Tumor followed the cystoscopy. The pathology from which confirmed muscle-invasive bladder cancer, Stage II.

Micheal with his husband James, a nurse, who encouraged him to see a doctor at the onset of his bladder cancer symptoms.

I had not heard many cancer survival stories. I spent a few days being completely devastated by the news, but fairly quickly something shifted me into business mode. I spoke with the Urologist who recommended chemotherapy followed by bladder removal. He explained the surgical options. He also explained that if I chose to not have the surgery that this cancer would ultimately result in my death.

Hearing that is not easy, but this decision was the easiest part of this entire experience. I elected to go through with the Radical Cystectomy to remove my bladder, prostate, seminal vesicles, and pelvic lymph nodes. I also elected, upon his recommendation, the neobladder option of urinary diversion. This Urologist would perform the surgery.

Port placement and chemotherapy next. Methotrexate, Vinblastin, Doxorubicin, and Cisplatin were the drug therapies the Oncologist felt would give me the best outcome. There were no illusions that chemotherapy would be the cure. Instead, they were used to increase my chances of survival post-surgery.

This Oncologist and the infusion nurses are the best medical professionals I have come across to date. The standard of care for chemotherapy recipients is off the charts here – which is wonderful because the chemotherapy portion of this trial is the worst experience I’ve ever endured. Trying to work through my chemotherapy proved much harder than I predicted, and I basically failed in that. I felt horribly sick all the time. I slept fourteen hours a day. By the end of my infusions, outside of the usual side effects of the drugs, I had developed several mental associations and the thought of certain mundane things made me feel sick. The thought of putting ice in my mouth made me sick. Receiving fluids to stave off dehydration made me sick. I could taste everything they injected into me. Luckily I only received four infusions, but I wouldn’t wish that on my worst enemy.

Surgery came about five weeks after chemotherapy ended. This gave me enough time to get some strength back. I still didn’t really have my hair back, but the beginning stages were sprouting.

This is where my fairly standard journey shifted. My surgery did not go as planned. I went under assuming I’d wake up with a neobladder, but instead I woke up with a urostomy.

My surgeon encountered complications in my abdomen that left him unable to create the neobladder. He consulted with my husband and they decided to go with our agreed-upon Plan B, the urostomy. The surgery took twice as long as planned, and according to my surgeon he was barely able to complete the urostomy because my blood vessels are “too short”. I’ve never thought of any part of my body as petite before.

I’m open about my circumstance and have realized that while bladder cancer is one of the most common cancers in the world, most people have no idea what this is all about

Post-surgery, I experienced a kind of reaction that cannot be fully explained. My kidneys were not functioning properly. My output was incredibly dark. So dark that they called in a Nephrologist for advice. My surgical team blames a drug called Toradol for the reaction while others blame the lengthened surgical process. I’m not really sure of the culprit but I am sure that I have permanent kidney damage from that surgery. The Nephrologist got me back on track quickly though.

This led to an extended stay in the hospital. Seven days total with intense back pain and lackluster care. I know that urostomies are not very common, but the nurses I encountered had very little exposure. One nurse throughout the week really knew how to apply the set up. It leaked a lot while in the hospital.
An ostomy nurse did visit me a little bit. I feared anyone touching my incision or my new stoma and couldn’t stop convulsing every time she tried to touch my abdomen. I know it frustrated her but it felt uncontrollable. She eventually quit coming by. They put us in touch with the major urostomy supply manufacturers so that we could begin ordering samples and from then we were on our own to figure out what worked. I haven’t seen an ostomy nurse since.

Recovery felt long. Six weeks away from work to heal. Moving was a challenge. Trying to sort out how to keep my urostomy from leaking challenged us. In the follow-up pathology from my surgery they also discovered that I had a second primary cancer in my prostate. Lucky to have had that removed as well.

It’s been a little over two years since my surgery and I’m doing well. I’ve sampled different supplies, and tried different ways to apply them, some successful and some not.

When I experience a leak I try to laugh about it. I am only 43 now with this permanent urostomy and I can’t spend the rest of my life being miserable. I choose to laugh when I pee on myself. Some times are harder than others, but overall I am pretty successful. I’m open about my circumstance and have realized that while bladder cancer is one of the most common cancers in the world, most people have no idea what this is all about. Luckily I’ve only encountered incredibly caring and receptive people.

A Quick Guide to Urostomy Basics

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Have questions about a urostomy? Worried that getting one will change your life dramatically? Terrified of the idea of one and wondering what people will think?

By Robin Glover

Don’t worry. These are normal feelings. Nobody likes the idea of getting a urostomy – at first. However, if you talk to people who’ve had one a while, they’ll tell you how much it’s improved their lives, and likely saved it.

So feeling a little apprehensive (or a lot) is completely expected. But getting a urostomy should not hold you back from living the life you’ve always wanted. Will it change your life? Yes, but likely for the better compared to past bladder issues.

What Is A Urostomy?

A urostomy allows urine to leave the body without the need of a bladder. Also known as an ileal conduit, it is a surgically-created pathway that channels urine through the intestine to an opening on the abdomen. This opening, known as a stoma, is covered by an external pouching system that collects the liquid.

Why Do People Need A Urostomy?

People need a urostomy because their bladder has either been removed or doesn’t function properly. This is most often due to bladder cancer, but can also be the result of an injury or disease. In other cases, people are born with a non-functioning bladder and benefit from a urostomy their entire lives.

Is A Urostomy Gross?

No. Not at all. They do not cause an odor, and most people won’t even know if someone has one. Getting a urostomy is often a life-saving procedure that allows people to resume their everyday lives. Most people find it much easier and more sanitary to have a urostomy than deal with an incontinent bladder.

Will A Urostomy Affect My Daily Life?

There will be some adjustments after surgery, but most people who get a urostomy can usually do more things than they could before. You won’t need to worry about the embarrassment of having an accident in public or always needing to know where the nearest bathroom is. But most of all, you’ll be able to live a longer and healthier life.

Is A Urostomy The Same As A Colostomy?

While they share similar mechanisms in how they function, a urostomy helps people with bladder incontinence. A colostomy helps people with stool incontinence. Both use a pouching system to collect what comes out, and both are sanitary and safe without any odor when closed.  Urostomy pouches have a tap or valve to allow the urine to be drained quickly and easily. Overnight options are available for nighttime drainage convenience.

How Many People Have A Urostomy?

You are not alone. An estimated 725,000 to one million people in the United States have an ostomy or continent diversion. Colostomy and ileostomy surgery are the most common ostomy types but many thousands of people of all ages and backgrounds have a urostomy or urinary diversion. For a bit of inspiration read a few of their patient stories on our blog.

How Will A Urostomy Change My Diet?

You can eat whatever you want when you have a urostomy. Of course, this is barring specific restrictions from your doctor or other dietary limitations unrelated to having a urostomy. But, in general, there are no restrictions to what you can eat with a urostomy but information on the importance of hydration and other good health practices are covered in our ostomy nutrition guide.

What Is A Continent Urostomy?

A continent urostomy involves a surgically formed internal reservoir that allows control of when urine is released from the body. It usually involves a catheter that’s inserted into the stoma. Continent urostomies can also be routed through the urethra so urine is released from the body in a more typical fashion. Check out our Continent Urostomy Guide for more information.

Does A Urostomy Decrease Life Expectancy?

The answer is no. Urostomy surgery is a way to help people live longer and more fulfilled lives. So if you’ve been told you need a urostomy, as much as you might not think so right now, you’ll probably be glad you had it.

 

These are probably just a few questions you have about a urostomy. Luckily, there are people all over the world happy to help you. First of all, your Wound, Ostomy, and Continence (WOC) nurse is there to teach and help you. But practical advice and emotional support are always just a click away in online communities and by finding a UOAA Affiliated Support Group near you. Just remember that only your doctor and WOC nurse know the unique circumstances of your condition.

For more information on urostomies, please visit our Urostomy Facts Page.

 

 

Robin Glover is a writer based in the Houston area. He has a permanent ostomy after being diagnosed with Crohn’s Disease in 2017.

 

 

What can I do with a Urostomy? What can’t I do?

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Don’t let an ostomy stop you from having some summer fun

By Annemarie Finn

When I received my bladder cancer diagnosis and the treatment plan, a radical cystectomy with an ileal conduit, I was devastated. Like so many, I went through many stages: Denial, Anger, Bargaining, Sadness and Depression, and finally, Acceptance. It felt like a double whammy. It seemed like the “cure” was worse than the disease. I would be forever changed. It was hard to wrap my brain around. It is one of the reasons I decided to write about my experience. I had no idea what to expect and did not know where to turn. I saw some videos of survivors with ileal conduits but, I did not relate with the speakers. They were 20-30 years older than I was. I really did not want to envision a life as an elderly person before it was time.

I can use a public restroom without having to sit on the gross toilet!

What would my quality of life be? I was terrified that life, as I knew it was over. Would I be able to work? What activities would I be able to do? What would I never do again? I had so many questions and fears.

So, what can I do now that I have a urostomy?

Honestly, I can do everything I could do before. When you first get out of surgery, you are hardly able to walk around your room. When you go home, the end of the driveway is a monumental trek. By persevering and trying to walk more everyday, I was able to go from measuring distance in feet to measuring in miles. Today, I try to walk 5-10 miles a day! I have hiked intermediate trails in the hills of Eastern Massachusetts. I have discovered miles of trails in my hometown that I didn’t even know existed. I am probably healthier than I was before I got sick.

Can you take a bath?

People often ask if you are able to bathe with a bag. It is very nerve wracking initially to expose your stoma. They are fairly active. I call my stoma, Squirt, when he (yes, it’s a he) acts up. He does spray urine. Picture a male toddler squirting. That’s what it’s like. We have no control over it. That’s why we wear a pouch.

As you can see, a urostomy after a radical cystectomy is a life changer, but in a good way.

You can wear your urostomy bag in the shower. You do not need to cover it or keep it dry. It is a good idea to dry the skin around it with a hair dryer on low when you are done. You can even take your bag off and shower without it. I am over two years out from my surgery and that is how I prefer to do things on my change day. I change my bag every 3 days. I prepare all of my materials (bag, ring, barrier, paper towels, remover spray) then remove my bag. I then take a shower. I wash the skin around the stoma with just water or soap for sensitive skin. Just make sure you do not leave behind any lotion or any residue that would affect the barrier sticking to your skin. I keep paper towels ready to catch any drips when I am done and dry the skin with a hair dryer on the cool setting. I then just put on my prepared bag. I have some skin issues and find this helps with the itching and discomfort. It feels so good not to have the bag on for a while.

What about swimming?

I am a water rat. I can be in the water for hours, literally hours. It doesn’t matter if it is in the ocean, a lake, or a pool. I have done them all. Personally, it has not affected the amount of time I am able to wear a pouch. I am still able to go 3 days. I am able to swim, kayak, and paddleboard with my urostomy. I even just float. It has not interfered with my love of water at all. Even better, I can wear a regular bathing suit. I have worn tankinis for years, and not because of my urostomy. I no longer have a toned teenage body. I don’t even have a toned 30 something body. I like 2 piece tankinis as they hide a multitude of sins. After I got my urostomy, I decided to buy regular 2 piece bathing suits. Ironically, I am much more comfortable with my new imperfect body than I ever was before. My family laughs at me because, where I was self-conscious before, I now show off my body. Maybe it was having so many strangers looking at my most intimate body parts in the hospital or maybe I am proud of my battle scars. You cannot see my bag with my bathing suit on. It’s honestly no big deal.

There are so many other things I have been able to do since my urostomy. I ride my bike. I participated virtually in the Norton Cancer Institute Bike to Beat Cancer, a 35 mile bike ride. I did it in steps but I gave myself a pass since it was only months after my surgery. I garden, do yard work, spread mulch, work, travel, you name it. As you can see, it has not limited me in any way. Because of my urostomy and thanks to my night bag, I can sleep through the night without having to get up to use the bathroom. That means I can drink up until I go to bed! I can sit through long car rides and movies with said night bag. I can use a public restroom without having to sit on the gross toilet! I can write my name in the snow!!! That is not conjecture, I actually did it. My sex life is good. I am planning a European vacation. Both of those will be the topics of future blogs.

What about what I can’t do

The list of what I can do is long. What about what I can’t do. I can’t pee like I used to. I am careful about lifting. I had a hysterectomy with my radical cystectomy so no more children for me. Since I was in my late 50s when I had my surgery, it’s not really an issue but, I am trying to be honest here. That is something to consider if you are younger. Definitely talk to your doctor if you want children. I can’t play the piano, but I couldn’t before. That’s about it.

As you can see, a urostomy after a radical cystectomy is a life changer, but in a good way. You can still do what you did before and even try new things. Even better, it is a life saver. Go out and live your best life. That’s what I am doing.

 

 

Dave Wolffe’s Story

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Excerpt from the story One Man’s Journey From Bladder Cancer

The day for my fourth cystoscopy had finally arrived. My doctor smiled and asked if I was ready for this exam. With a nod from me, turned off the lights, and guided the instrument into my body. He reiterated that there were cells in my bladder. I felt a large lump in my throat, and my face began to flush. Because these cells had been so aggressive and returned after the three previous treatments, there were no additional medications that could be used. He explained there were several other choices: (1) do nothing, (2) having a neo-bladder constructed, and (3) urostomy surgery. We would discuss these options in a few weeks.

Note: Each person is unique, and so are the methods used to treat this cancer.

An appointment was made for this consultation, and within two weeks I would see my doctor. In the interim, I had given careful thought to all three options. Doing nothing could be taking a huge risk. If the cells should travel into the muscles of the bladder, my life would definitely be in jeopardy. There was a chance these cells might metastasize to other organs of my body. We could wait and see if they did travel. However, this was not a chance I wanted to take. A neo-bladder, created from my intestines, would allow me to still urinate through my penis, but required much effort to adjust to, and a longer recovery time. It also brought with it the possibility of incontinence, or not working properly, necessitating additional surgery. The neo-bladder is also a relatively new form of treatment that many urologists choose not to use.

My final option was to have my bladder and prostate gland removed surgically. Compared to the construction of a neo-bladder, the recovery time was shorter. It had been proven to be successful in eliminating cancer and allowing patients to resume normal lives. This return to normalcy would occur after an initial adjustment period when the patient learns how to use and care for the Ostomy Pouch. Over time this would become routine.

After more consultation… My faith and confidence in my physician and in my decision to receive “external plumbing” (the ostomy pouch), gave me peace of mind up to the day of surgery.

Road to Recovery

My hospitalization would soon be terminating. However, before leaving I insisted on seeing the Ostomy Clinical Nurse Specialist (CNS) making sure that I felt confident applying and removing my ostomy pouch. Even though the hospital wanted to discharge me, I was persistent. Managing my ostomy pouch will be a lifelong endeavor. The CNS reviewed the process of changing the pouch and demonstrated it several times. Her patience, warm smile and reassurance made me feel capable of handling this task on my own and confident to be discharged from the hospital. (Keep in mind that it is a patient’s right to determine whether or not he/she is ready to leave the hospital)

On My Own

After then spending time in a rehabilitation facility It was great to finally be home, and feel independent. As a widower, I was fortunate enough to have met a woman whose companionship helped to avoid a great deal of loneliness. Had she not been there, returning to my empty house would have heightened my feeling of isolation. Thinking back, yes, I certainly could have managed by myself. However, her presence made my transition from the hospital, rehabilitation facility, to home that much easier. Many patients who are single, or don’t have family/friends to support them when returning home, can find this a mixed blessing. They may feel independent, yet experience loneliness. Anxiety may occur over fear they may lack the ability to manage by themselves. The services of a visiting nurse, physical/occupational therapist, or a mental health professional can be provided to alleviate these concerns. The availability of these services were discussed during my exit conference from the rehabilitation center.

Adjustments To Be Made

Anxiety arose as I continued on my journey to recovery. The first of these emotional hurdles, especially for newbies is attaching an ostomy bag securely, preventing leakage. Having a spare pouch and supplies, along with a change of clothes, solves this concern. My medical supplier provided a small pouch to carry these items. Initially, I had many questions about the ostomy pouch. However, when various concerns arose, (getting this device on properly, leaks, or supplies), my nurse responded to these questions promptly and gave me the reassurance I needed. Trust me, I continued to have questions for months after my surgery. By that time I built up enough confidence in using this device, and it became more routine. Ostomy nurses serve as a great resource. They also recommended a monthly support group. Knowing what others have gone through, and how they dealt with their post-surgical life, can be very helpful.

Thanks to my Ostomy Clinical Nurse Specialist (CNS), two additional Leak Prevention Supplies (LPS) were suggested: (1) A belt attaching to both sides of the bag to hold the wafer and pouch more securely in place, and (2) A U-shaped elastic barrier fitting around the bottom of the adhesive which attaches to your body and wafer. These items can be requested from your medical supplier, and may help give some peace of mind. These remedies have worked for me. Timing for emptying the pouch is another adjustment. This usually occurs when the bag is 1/3 to 1/2 full. For me, this point is reached hourly, possibly because my kidneys are located in the front of my body. For others, this may occur up to 2 1/2 hours. However, empty points are individualized.

Timing this process initially limited me from going places beyond one hour. For many of us, noting the location of bathrooms is something we typically make prior to leaving for a destination. Even before surgery, I spotted the location of the bathrooms. If you think about it, for many people who still have their bladder, nature calls them frequently. Whenever this need arises, they go on “bathroom alert.” We don’t have this urgency or stress of finding a bathroom as they do. We can anticipate when to empty our pouch and can plan our pit stops in advance. This is a positive of having an ostomy pouch. Think about that.

Ways to judge the timing of emptying the pouch also become routine. Checking your watch, cell phone, or clock helps the timing factor. Generally, If I were to go to a restaurant, at most, twenty minutes away from home, I’m able to wait until I have eaten my meal before emptying my bag. For others, gauging the timing may involve the length of events (movies, shows, etc.) or the time it takes to reach a destination. It’s an awareness that you will develop. During your recovery period, fatigue could be an issue. Initially, I tried to do too much, too soon. Don’t fight this feeling. You don’t have to prove anything to yourself or anyone else, about how well you are recovering. Listen to your body. If it’s telling you to rest, do that. Remember, the fatigue lessens over time, and your strength does return. For me, it took approximately four months.

Don’t Try to push yourself. If you do you might become frustrated and that doesn’t help. In fact it may extend your recovery time.

Pouch Changing 101

I had devised my own schedule for changing the ostomy pouch — every Friday and Monday. A rule of thumb is to change it every three-four days. You will decide what days, how often, as well as choosing a medical supplier that offers products that best suits your needs. After leaving rehab, one company had offered supplies to me. If you, like me, prefer their products, then stick with them. If not, check other distributors and request samples from them. Many people experiment with several companies before finding the products that work for them.

After experiencing a few glitches, (ie; tearing a pouch, or unable to remove the protective piece covering the wafer),you realize some possibly could be avoided in the future. Being aware of these mishaps helps to avoid future problems, and will make the process of changing your bag go more smoothly. In addition, once you have repeatedly gone through this part of your “life without a bladder” it doesn’t require too much thinking or time. Perhaps this thought may be difficult to believe, but it does happen.

Don’t get bent out of shape when things don’t go as planned. Use these experiences as problems to be solved.

You may find other obstacles to overcome. The good news, once these challenges are met and conquered, they make this part of your life more tolerable. It may seem as though you’ll never feel comfortable. The more you are aware of this process, and follow it repeatedly, the easier it is to make the required adjustments. Those who have traveled along this path can be very helpful. They have been for me. The more information you receive, the less stress you will experience.

Be patient with yourself don’t hesitate to ask any questions you may have.

Yes, there are adjustments to make and new roads to travel. Through knowledge gained from resources, along with your own experiences, make this continuing journey just another routine part of your life. However, it takes time and effort. HAVE PATIENCE!!

It has been several years since my surgery. I have learned a lot, and have made adjustments to my life. You can reach this point as well.

YES, THIS IS SOMETHING YOU NEVER EXPECTED. YES, THERE ARE ADJUSTMENTS YOU WILL NEED TO MAKE. YES, THIS PROCESS TAKES TIME. YES, THIS WILL BECOME ANOTHER ROUTINE PART OF YOUR LIFE.

Annemarie Finn’s Story

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Bladder cancer and urostomy surgery do not stop Annemarie from living her best life.

I am a bag lady. I am highly educated and employed, yet carry a bag wherever I go. I don’t leave home without it. Because of bladder cancer, I have a urostomy. Like many other women, it took some time for my diagnosis. At 57, many of the symptoms I experienced were attributed to my age: menopause, UTIs, kidney stones, fibroids, etc. Thanks to the fibroids, I was scheduled for an ultrasound. It was my gynecologist who found the bladder tumor. She referred me to a urologist. In fact, she insisted. Her office called to make sure I followed through. I met that week with a local urologist. He did a scope. I saw him look at the nurse, concern written on both their faces. He started talking about surgery and apologizing for the diagnosis. In my naivete’, I had gone to the appointment by myself. I don’t remember him even saying the words, but I had bladder cancer.

Scans and a transurethral resection of a bladder tumor (TURBT) were scheduled for the following week. Usually an outpatient procedure, I was in the hospital for 4 days due to heavy bleeding after the TURBT. The tumor was large and the doctor couldn’t get it all but he thought it had penetrated the muscle. Unfortunately, the pathology was inconclusive so he did another TURBT the following week. The outcomes were exactly the same so we both decided my best chances were for a second opinion at Dana-Farber Cancer Institute in Boston. Throughout our discussions, he explained what my future might entail. It looked likely that they were going to have to remove the bladder and I would either have a new “bladder” or a bag. Quite honestly, I had no idea what it entailed, but I was horrified.

Dana-Farber is an amazing place. I had a whole team in place: a medical oncologist, an oncology urologist, a nephrologist, among others. The plan was an MRI to confirm the tumor’s pathology, a nephrostomy tube, chemotherapy and, if the cancer had not spread, a radical cystectomy. If it had spread, I would not need surgery but would be eligible for palliative care. Who would have thought surgery is the best case scenario. Due to claustrophobia, and despite anesthesia and Ativan, I moved so the MRI was inconclusive. I needed another TURBT. Thanks to my new amazing surgeon, the tumor was removed and the passage to my kidney was cleared. The pathology of the tumor showed no spread to the muscle and an ultrasound showed no more kidney hydronephrosis. Even better, I would no longer require chemotherapy. I did try immunotherapy with BCG but it did not work. The cancer was aggressive so we had to treat it aggressively. My radical cystectomy was scheduled for January 25, 2019.

It took me a long time to get there. I even asked what would happen if I did not receive the surgery. I would be dead in a year.

Wow, that was sobering. Because of the proximity of the tumor, I did not qualify for a neobladder. I would have to have a urostomy. Every time I talked about it, or even thought about it, I cried. I felt like I was going to be a freak. I offered my husband a divorce if he wanted one. I was devastated and frightened. I have learned that fear of the unknown and our imaginations are far worse than the reality. While so much of what had happened to me was out of my control, I did have control over one thing: HOW I handled everything. I decided knowledge was power. I was fortunate. My hospital had a class for urostomy candidates. For the first time, I was able to see an actual urostomy pouch. I was given hands-on instruction on how to change a bag. I met ostomy nurses (the best people in the world!) who would be helping me.

I decided I would be the one to handle my changes, right from the start. I would take control.

My surgery lasted 7 hours. I needed a transfusion but things went well otherwise. The surgery was not easy. People have described it as feeling like you were hit by a bus. I never really had any pain. It was easily managed with Tylenol. However, I was so weak. I eventually needed an iron transfusion. The one thing I wish I had gotten for my return home was a shower chair. Showers were the worst for me. It took me two months to feel more like myself and another month before I felt ready to return to work. I also cannot say enough about getting a good ostomy nurse. I have been described as a delicate flower (surprising to those who know me). I have very sensitive skin. The nurse was a Godsend to me in trying to manage all of my skin issues. After my visiting nurse visits ended, I continued to see the ostomy nurses at the hospital where I had my surgery. It took a year but, through trial and error, I finally have gotten a handle on things.

I had a few leaks. They were usually caused by user error. They were not the huge floods I expected. Honestly, none of this was as awful as I expected. So many people said this would be my “new normal”. I can’t stand that term. I call it my new reality. There isn’t anything normal about having a urostomy. However, it is very doable. I now wear two-piece bathing suits. I didn’t before. I am wearing the same clothes as I did before. I can kayak, hike, ride my bike, swim for hours, anything I did before. I was here for the birth of my first grandchild. I am back to work, a job that I love. I am not shy about talking about my bag to others. It is not a secret. In fact, I am kind of proud of it. I am alive and life is good.

Support the Ostomy Community this Giving Season

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Give back to those in need with a gift to sustain this website and programs such as the Ostomy Patient Visiting Program

Gina Day, left, an ostomy nurse and affiliated support group leader confers with Certified Ostomy Visitor, Tim Slutter “It really takes another ostomate to help reassure new ostomates they are not alone and there are many others out there living a normal life. I hear time and time again how important this program is in making patients comfortable having an ostomy,” Tim says.

Imagine if everyone dealing with the emotions and physical changes of ostomy surgery could see a friendly face before them in their hospital room? Someone who knows what they are going through from their own experience and can tell them things will be alright – that they too can thrive in life with an ostomy. Someone who can listen to their feelings and make them feel less alone in those vulnerable first days.

Donate Today

UOAA’s Ostomy Patient Visiting Program is one of the most important services we provide through our over 300 Affiliated Support Groups (ASG). This program offers person-to-person support, reassurance and practical information to those who have or will have ostomy related surgery and their caregivers. Ostomy visitors who have completed UOAA’s Certified Visitors Training Course through their ASG will have a clear understanding of their role and responsibilities, and will strive to be a central member of the ostomy patient’s rehabilitation team (includes the surgeon, WOC nurse, hospital floor nurse and ostomy visitor.)

Your gift will enable UOAA to continue to provide services, such as this website filled with trusted information, and our Ostomy Patient Visiting Program. One of our goals is to update the certification course training manual and instructional video, and make the training program more internet-friendly which is critical to its future success. With the estimated 100,000 ostomy surgeries performed annually, it is vital for ASGs to have access to an up-to-date course to teach key skills to those who would like to become certified ostomy visitors. Click to donate.

 

 

 

 

 

 

 

 

 

This is your opportunity to make a difference, providing a vision of hope and reassurance to new ostomates and their caregivers that they are not alone. Thank you for your support.

United Ostomy Associations of America, Inc. (UOAA) is a 501(c)(3) charitable organization and all donations are tax-deductible. For more information about giving to UOAA click here.
Please think of UOAA in your year-end giving plans and this #GivingTuesday.

 

 

 

 

 

 

 

 

 

 

 

 

 

Liz Hiles’ Story

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I  had been increasingly struggling with symptoms for over two years with medical personnel brushing me off because I did not fit the norms for bladder cancer and didn’t check off enough risk factors for it. By the time of diagnosis, at the age of forty, I was perpetually in pain and discomfort, I was periodically urinating blood clots and I was unable to sleep through the night due to the pain and frequent urination. I felt like I spent most of my time and energy running to the restroom. I even had one ED physician laugh at me and assume that I didn’t know my own body well enough to know whether I was urinating blood clots or having issues with my menstruation cycle.

I had my urostomy surgery on September 23, 2016 after receiving a bladder cancer diagnosis on August 12, 2016. I had Stage IV Bladder Cancer with a T4, muscle-invasive tumor.

Having my surgery has allowed me to get back to my own life and start living again…mostly without pain. I’m able to sleep through the night again and I do not spend most of my time running to the restroom.

I have been working in a pediatric GI office since 2012, so not only was I aware of ostomies and that a person could live a long, productive, great-quality life with an ostomy, I also had my very own personal ostomy support crew. My coworkers are amazing and have been so supportive through everything…several nurses have even given me ostomy/stoma care tips and helped me address potential concerns. One nurse, a true-blue friend, even helped me change my bag a couple of times when I first had my surgery and was in rehab!

Finding Support

During my chemo treatments, I first started looking at online resources and started reaching out. I remembered that my WOCN told me there was an active local ostomy support group. It wasn’t until November 2017 that I was physically able to make any meetings in person.

Encountering the Greater Cincinnati Ostomy Association GCOA was the best connection I could have made post-everything. I originally tried to connect with people through the American Cancer Society and the Cancer Support Community, but bladder cancer is sort of a red-headed stepchild of the cancer community. It affects many on a number of levels, but NO ONE talks about. Not everyone diagnosed with bladder cancer has to go through the extreme treatment measures I did, so there are varying experiences within the diagnosis. However, going to the local cancer-focused groups was very frustrating and discouraging for me as most of the people I met there were breast cancer survivors whose experiences did not have any similarities to my own. There were no local bladder cancer-specific groups in my area and there still are not.

When I finally connected with UOAA/GCOA, I found more understanding, empathy, compassion, and comradery in the first meeting than I had in several with the cancer organizations. People definitely made the difference. Online support was okay, but even there I was sometimes frustrated with the set up because it too easily turns into a forum for sharing memes and complaining about their situations. There’s not a lot of educational conversations or intellectual discussions about what I was experiencing, which was something I was craving.

Becoming Active Again

I am still experiencing neuropathy in my feet and ankles as a side effect of the chemo treatments that I will probably deal with for life and I am still working on getting my strength and energy back, but I am gradually reclaiming everything that I did before. I fell shortly after my last chemo treatment and spent about 3 weeks in the hospital/rehab before getting discharged on a Friday and returning to work the following Monday because I had exhausted all of my medical leave and it was either return to work or lose my job. I did not want to deal with the stress of job hunting after all I had been through and going on disability indefinitely was a luxury that I could not afford, so I returned to work completely bald and using a walker. The first day back, I could barely make it from the front door to my office chair. Still, returning to work was one of the best things for me because it forced me to have to rebuild my strength and be active.

I now work 40+ hours a week again with a team I love supporting and I volunteer with the GCOA and Hughes High School, my alma mater, as much as I can. I took over the presidency of the GCOA back in January. I still live alone on the 2nd floor of my quaint, inner-city, 2-bedroom apartment. I enjoy spending time with friends and extended family. Last May, I rented a car and went on a road trip by myself to Columbus, OH to participate in the BCAN Walk to End Bladder Cancer and catch up with some amazing people that I have in my life. I will be taking a plane and train trip in August to attend the UOAA National Conference and go on vacation in upstate New York afterward. I am finally able to start walking and being a bit more active again and have started trying to figure out how to do some of the higher energy things I used to do (like dancing and workout videos) despite the neuropathy, which sometimes makes it hard for me to coordinate my feet. It’s all a process though and I try to take it one day at a time. I’m hoping to be able to take a trip to Argentina in 2020…your attitude and determination are what makes the difference and I’m determined to accomplish things that I have always wanted to do despite the obstacles I’ve had in my past.

Raising Awareness

Both bladder cancer and urostomies are extremely rare and there are huge discrepancies in diagnosis and treatment of bladder cancer, especially with women and minorities. It has been really important to me to bring awareness to both issues because I truly believe that lives can not only be improved, but saved by advocating, educating and raising awareness of bladder cancer and ostomies. So many people immediately think that having your bladder or part of your colon is going to end life as they know it. In part, they are correct, but not in the way that most people think at first thought. People with ostomies can live long, productive lives and be amazing leaders in their communities…just like anyone else. Just because you will always have a medical condition that requires the use of medical equipment does not mean that your life is over. It is different, that’s all. We’re all different though, having an ostomy just makes you extra special.

When my urology oncology surgeon told me that he wanted to remove my bladder (along with various other abdominal parts), I didn’t hesitate at all and said, “Okay. So what’s next?” I knew that my life would be over if I didn’t get an ostomy and I knew that my life would not be over with an ostomy. It was one of the easiest medical decisions I have ever made. He could have asked me if I wanted a cup of coffee it was that easy. That doesn’t mean that I didn’t have struggles and the journey wasn’t a challenge because I did and it was, but I am grateful that I had a choice of life or death and that I was able to choose life so I could get on with mine. Raising awareness for bladder cancer and ostomy awareness means that I could help someone make that life-saving decision that much more quickly and that they would be able to move onto healing and gratitude that much more quickly, instead of being bitter, pissed and depressed over losing a non-essential piece of themselves.

I have raised money, made social media posts, written articles, blog, had discussions, and encouraged others to go outside of their comfort zone to seek support. Additionally, I fairly quickly began being more involved with my local ASG and am committed to thinking outside the box and expanding opportunities to reach people where they are at and, hopefully, encouraging to become/remain involved and to share their own stories.

Staying Positive

I’m alive! I’m not in constant pain and discomfort. I can sleep through the night and not be up every 10 minutes to go the bathroom. I don’t have to do that “gotta go” dance while standing in line for the ladies’ room. I can hook up to my Foley for long trips or binge-watching and not have to move for hours. My bladder does not interrupt me in the middle of the best scenes when I go to the theater. I’m able to concentrate again. I can relieve myself while standing up or writing my name in the snow (gotta see a little humor in the situation)!

My advice is to just focus on living your life. The closer you get to doing everything you did before, the more positive the picture of life with an ostomy becomes. Yes, you can live without those parts and you can still be an active person. Your life and your dreams are still unlimited…it just might take a little extra preparation and planning, depending on your personal diagnosis and situation, but real life and real dreams take hard work, no matter who you are! You have to work for the things in life that you want anyway…no matter who you are or what your circumstance is, but the harder you have to work for something, the more worthwhile, valuable and meaningful it is to you. Only you can make the decision on how meaningful you want your journey to be though.

Overcoming Challenges

Most of my challenges are from my cancer treatments and not from having an ostomy. Still, bending and twisting are sometimes challenges. I do have a hernia that I way too quickly achieved by sneezing and, although it does not typically bother me, it is something to keep in consideration when I am trying new movements or lifting heavier objects. I have neuropathy and slight hearing loss as side effects of my chemo treatments and those are more annoying and challenging than my ostomy issues. Every once in a while, I have a leak, but I generally carry at least a few supplies with me so I just try to catch it quickly, change and move on. I’m really fortunate to have amazing friends, family & coworkers who are really understanding and supportive when these things happen and they don’t bat an eye when I need to deal with these things. Overall, I’ve pretty much learned to have a new definition of “normal” and I take things day by day and slow down when I need to and, most of all, when new things come up, I TRY instead of just giving in.

Advice for those who may need ostomy surgery?

Don’t think twice! No, it isn’t always easy and it isn’t always an easy choice. Sometimes, it’s all very hard. Yes, life will be different, but, in the long run, it’ll be worth it and at least you will still have a life to live.  If you give the ostomy and yourself a chance, having an ostomy will ultimately give you a better quality of life. Also, don’t be afraid to reach out to others who have had similar experiences…that’s how you get through the challenging moments, days, and weeks. Also, I feel like it is critical to share your own story in some way, shape or form. Not only does it help others get through their situations, but it is a great way for you to heal and get through your own story. Sharing your story is a way of honoring yourself and allowing you to shed light on your own strength because many times you don’t realize just how strong you are. Martin Luther King, Jr said, “Our lives begin to end the day we become silent about things that matter.” Keeping your story bottled up inside and not even sharing it with the people you love is detrimental to your journey. You matter and so does your story, so share it.

Making a Difference

Last year, I hosted a virtual Run for Resilience Ostomy 5k walk locally and I had 6 humans and a canine share in a beautiful day at a local park. It was great to share my story with people who hadn’t heard about it before while walking. Prior to my own surgery, my team at work and I would wear blue and green on Ostomy Awareness Day in support of the patients and families we care for.

I have grown up participating in similar events and have always found them inspiring and empowering. This year, we hope to have even more participation and invite everyone to meet at a group meal afterward. I will be attending my first UOAA National Conference in August and I’m excited to make new connections and learn more information that will enable me to assist others in getting back into life after receiving an ostomy. I would like to see others get involved in these events because it gives them connections, information, support and empowerment. There is no substitute for making connections in real life with people who have tackled the same problems, fought similar battles, and, most of all, WON. There is strength in numbers and we are all stronger together.

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