Tag Archive for: neobladder

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.

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.

The Ins & Outs of Continent Diversions for the Bladder: What You Need to Know

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By UOAA Advocacy Committee Members:
Joanna Burgess-Stocks BSN, RN, CWOCN
Anita Prinz RN, MSN, CWOCN

Why does one have their bladder removed?

The most common reason for removal of the bladder (radical cystectomy) is due to bladder cancer. Less common reasons are due to gynecological cancers of the vagina and uterus and rectal cancers. These cancers may invade the bladder. Indications for bladder removal not related to cancer include bladder dysfunction due to a neurological impairment, radiation cystitis, interstitial cystitis or some kind of trauma that has occurred.

Whatever the reason for bladder removal, it takes consultation with a surgeon to determine the most effective bladder diversion and one that will result in the best quality of life. This article focuses on continent urinary diversion types.

To pouch or not to pouch?  

Patients facing radical cystectomy may be presented with several surgical options; urostomy (ileal conduit), a continent pouch, or orthotopic neobladder. Many candidates naturally want an option that does not require wearing an ostomy pouch. However, continent diversion surgery needs to be thoughtfully and seriously considered as these surgeries are extensive and have possible complications including incontinence.

Continent Urinary Diversion Types:

With a continent urinary diversion one has control over when the bladder is emptied versus a urostomy (ileal conduit) where one does not have control and urine output must be contained in a pouching system. Individuals with continent diversions will either catheterize a continent pouch several times a day or they will learn to urinate through the urethra. These surgeries are typically done at large teaching hospitals which for many, may be located quite a distance from where they live. This should be considered, as regular post-operative visits are necessary.   

The continent pouch is a surgical procedure in which a “reservoir” is created by opening up loops of bowel (small or large intestines) and sewing them back together to create an internal pouch or pseudo-bladder. This is now where urine is stored in the body. The urine is drained on a regular basis through a stoma (intestinal channel) located on the abdomen and connected to the reservoir. The stoma is continent (does not leak urine) because it is created with a valve already located in the body (the ileocecal valve) or a valve is created surgically. The valve is placed between the internal reservoir and the stoma. The valve stops urine from exiting the body until a catheter is inserted.  

These diversions do not require the use of an ostomy pouch but are managed with a stoma cover (foam dressing) or a piece of gauze for protection. Emptying the bladder is done by inserting a catheter into the stoma. Manual dexterity is a must for learning this technique. Catheters, water-soluble lubricant, and stoma covers will be your needed supplies. Catheters can be cleaned and reused.  Over the first year of surgery the capacity of the continent pouch will increase from 300 to 500 mls. Thus, the time between each catheterization will increase until a frequency of every 4-6 hours is achieved.

The Indiana, Modified Kock Pouch, Mitranoff, Miami and Mainz are types of surgical procedures to create a continent pouch. The choice of which one to use is based on the surgeon’s assessment of which one will be most appropriate for the individual. Want to know what it’s like having an Indiana Pouch? Watch this YouTube video.

Specific Considerations in choosing a continent pouch:

  • Frequent self-catheterization
  • Occasional irrigation to cleanse the pouch of mucous
  • Sufficient manual dexterity
  • Acceptance of the appearance of a stoma
  • Evaluation and preoperative stoma site marking by a WOC nurse is important in preparing for this surgery.

The orthotopic neobladder, a bladder substitute, is created from the small intestines much like the continent pouch. With this technique, a reservoir or pouch is created to hold urine which is then connected to the urethra to allow urination in the usual manner. The individual will sit to urinate and must learn to relax the urethral sphincter and bear down and/or press on their belly to empty all the urine.

It is recommended that neobladder candidates should have their pelvic floor muscles’ (PFM) strength, tone, and endurance evaluated prior to surgery. Learning how to do pelvic muscle exercises before surgery is helpful and will need to be continued after the catheter has been removed following surgery. Achieving continence will take consistent daily practice with timed toileting and strengthening the pelvic floor muscles.

People who undergo surgery for a neobladder must be aware of the potential for both daytime and nighttime incontinence and urinary retention.  However, this will improve but it may take up to one year. Current studies show vast ranges in complete continence after one year from 22-63%1.  Patients need to be educated regarding regular toileting and use of continence aids to manage this potential problem. Another consideration is that individuals will need to learn self-catheterization as periodic irrigation with a catheter will be required to remove mucous that can build up in the bladder and may be needed to help with urinary retention. When considering surgery for a neobladder, one must be open and honest with both self and the surgeon concerning your feelings of caring for a neobladder and the potential problems of incontinence and urinary retention.

Additional neobladder facts are here.

Specific Considerations when choosing a neobladder:

  • Must be able to adjust to scheduled voiding every 2-3 hours
  • Must be able to perform self-catheterization as needed to drain urine or mucous.  

Special Considerations with Continent Diversions

A continent diversion does not have muscles to expand or contract like a natural bladder, nor does it have nerve endings to alert you when it is full. These changes require the individual bear down and press on their belly to aid in emptying it and/or insert a catheter into the stoma or the urethra. Individuals must become very in-tune with their bodies as to when it is time to empty. In the beginning, most individuals must rely on alarms to remind them to empty their new bladder. After a period of time, many state that they get a “sense” that they need to empty.  

Individuals with continent urinary diversions have an increased risk for many complications, the most common being urinary tract infections. Metabolic problems can also occur as the “new” bladder absorbs urine byproducts such as ammonium, hydrogen and chloride. Other complications include pouchitis (inflammation of the pouch), pouch rupture, kidney infections, stomal stenosis (when the diameter of the stoma at the skin level narrows or constricts), urethral strictures, bladder stones, and B12 deficiency. The prostate is most always removed in radical cystectomy procedures making sexual performance a concern in men. Women may also experience painful intercourse.

One of the most difficult and emotionally challenging complications of these surgeries is the development of incontinence (urine leakage; the inability to control urine). This can happen either from the stoma or urethra. Those with continent pouch diversions can wear an ostomy pouch to contain the leakage. Those with neobladders may need to catheterize themselves on a regular basis or wear incontinence garments. Treatments vary and surgical interventions may be necessary.

Why would continent urinary diversion surgery not be considered?

Continent diversion surgery requires a patient to have a healthy bowel. They are also surgically challenging to create making it a lengthy OR procedure.  The following are reasons why a surgeon may not consider continent diversion surgery:

  • The intestine is diseased (i.e., inflammatory bowel disease)
  • Past history of multiple bowel surgeries
  • Overall general poor health
  • Treatment with pelvic radiation therapy
  • There is disease of the bladder neck and/or urethra (in cases of cancer for neobladder)
  • Poor working urinary sphincter (for neobladder)
  • Liver dysfunction
  • Kidney disease
  • Poor manual dexterity
  • Poor motivation to care for self

In conclusion

Those who choose continent diversion surgery can lead a happy and successful life without the need of wearing a pouching system.  However, one must be counseled prior to surgery of the work that goes along with daily life in managing the diversion and the possible complications that may result. Individuals should wear a Medic Alert bracelet at all times in the event of an emergency to alert caregivers.  Support is imperative to adapt to a new body, and new life, physically and emotionally. UOAA is here for you. Check out our helpful continent urostomy guide.

1Nayak, A. L., Cagiannos, I., Lavallée, L., Morash, C., Hickling, D., Mallick, R., & Breau, R. H. (2018). Urinary function following radical cystectomy and orthotopic neobladder urinary reconstruction. Canadian Urological Association Journal, 12(6), 181-6. https://doi.org/10.5489/cuaj.4877

Resource: The American Physical Therapy Association (www.apta.org) has information on therapists that specialize in working with pelvic floor muscles and incontinence.