By Robin Glover

The Run for Resilience Ostomy 5k is set to return for its eighth year beginning on Ostomy Awareness Day, October 1, 2022. This year’s event will feature both in-person races around the U.S. and the worldwide Virtual Ostomy 5k. Individuals and teams will be running, rolling, or walking to raise money and show their support for the critical programs and services of United Ostomy Associations of America (UOAA).

Ostomies Are Life-Savers

No matter their story, there are two things all ostomates have in common: incredible resilience and a life saved or much improved by ostomy or continent diversion surgery. The Run for Resilience 5k is a celebration of that. And while every participant can get a run t-shirt with “Ostomies are Life-Savers” emblazoned on the front, each of them have their own stories and reasons why.

For Sydney, a 23-year-old living with an ileostomy, she’s participating and fundraising for the Virtual Ostomy 5k to share the story of how ostomy surgery saved her life. She also wants to serve as an inspiration to other young people facing similar challenges and let them know they can “live the life they want because of the ostomy bag” and not in spite of it. Sydney exemplifies the resilience of the ostomy community.

Liz exemplifies that resilience, too. A month and a half after being diagnosed with bladder cancer, she underwent a radical cystectomy (bladder removal) with a total hysterectomy and stoma placement. Liz is now an advocate who wants everyone to know that her urostomy saved her life. She and a fellow UOAA Support Group leader are hosting a Virtual 5k walk in Cincinnati  because “we are living proof that ostomies are lifesavers and that you can have a fulfilling life with an ostomy.”

The need for an ostomy or other continent diversion isn’t always directly due to a medical condition. Stefphanie was hit by a drunk driver and underwent eleven surgeries in the two weeks following the crash and required both an ileostomy and a mucous fistula. Though hesitant to talk about it at first, she’s now thriving and wants to share her story to inspire others.

If you don’t want to run or walk yourself, consider shining a light on this resilience by supporting the fundraisers of people like these.

In Person Events Are Back This Year!

In addition to the Virtual Ostomy 5k which can be held anywhere by anyone, in-person Run for Resilience 5k events are back this year!

These events are family-friendly gatherings and a chance to share ostomy awareness in communities all around the country. Most events take place on beautiful parkland or waterfront trails. They also all feature an opportunity to visit with ostomy product representatives in person and visit other event sponsor tables. Race participants will also receive a goodie bag with promotional items and educational materials.

Don’t worry if you are not in running shape ­– do what you can. Walkers outnumber runners at many of these in-person fun runs. More serious runners looking for an event to attend however may want to travel to the Durham, North Carolina Run for Resilience Ostomy 5k as it takes place on a timed and certified 5k course.

Past participant Lianne Weller shared what makes these events special, “The 5k race allows other ostomates to build confidence and breakdown barriers to getting back into physical shape; going one step closer to their goal. I feel more confident and less self-conscious because I’m surrounded by individuals who have all gone through similar obstacles.”

As envisioned by the 5k founders, all locations will get an optional ostomy pouch provided by Exclusive Diamond Sponsor Hollister. Non-ostomates are encouraged to wear their ostomy pouches during the race. (Don’t worry. They’re easy to put on.)

The Arizona Run for Resilience Arizona 5k will have a great new location in Scottsdale on October 1st, 2022, with a 5k run/walk and a fun run for the kids.

The newest in-person event is the Miami, Florida Ostomy 5k taking place at the University of Miami Campus in Coral Gables on Saturday, October 1st, 2022, from 9:00 am to 3:00 pm. Organizer Ana Restrepo says the event will include food, drinks, games, giveaways, and more.

Other in-person Run for Resilience 5k events being held across the country in celebration of Ostomy Awareness Day on Saturday, October 1, 2022 are:

Vancouver, WA

Nashville, TN

Boise, ID

Birmingham, AL (October 8th)

(Please follow each individual link to get more information about times and types of races.)

 “I Intend to Be Victorious”

For every person living with an ostomy or other continent diversion, there’s a story of resilience to go along with it. A virtual participant who goes by Poo and Friends, is working to take their life back one step at a time and they “intend to be victorious.

You can learn more about other participants of each race location or the worldwide virtual by clicking on the circle above their name and reading their story.

Don’t forget to click “Load More Fundraisers” to see them all, including Tanya who’s one of the many wonderful Certified Wound Ostomy Nurses (CWON) and Wound Ostomy Care Nurses (WOCN) taking part in the 2022 Run for Resilience Ostomy 5k.

Share Your Story Too

Are you someone who wants to help break the stigma around ostomies and be an inspiration to others? You’re encouraged to sign up, create your own fundraiser, and share your story. After all, the story of your journey can be what helps someone else make it through theirs.

To participate in the Virtual Ostomy 5k and get this year’s awesome Ostomies Are Lifesavers T-shirt in time for Ostomy Awareness Day you have to register by September 9th.

  • Run, walk, roll or pedal a 5k (3.1 miles) route of your choice. You can even use a treadmill!
  • Take pictures of yourself during your race and email them to info@ostomy.org or message or tag UOAA on Facebook, Instagram, Twitter, LinkedIn or TikTok
  • Hashtag your photos with #OstomiesAreLifesavers and #RunforResilience

Friends, family, members of the medical community, and anyone else who wants to support ostomates and celebrate their resilience are also encouraged to donate or create their own fundraiser. Fundraisers will receive special promotional items depending on how much they raise.

Help Support UOAA

Funds raised during the 2022 Run for Resilience Ostomy 5k will support United Ostomy Associations of America (UOAA), a 501(c)(3) nonprofit organization that provides national advocacy, support and resources for the 725,000 to 1 million Americans who have had or will have ostomy or continent diversion surgery. These surgeries are lifesaving and have allowed many people to return to living a healthy life.

To find out more about the Run for Resilience Ostomy 5k please visit www.ostomy.org/5k.

 

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

By Robin Glover

Ostomy surgery is a life-changing event. As ostomates, we go through things other people will never have to experience. Everybody’s story is different, but we have all shared in many similar aspects of our journeys. We are a unique community of strong and courageous people of all ages and backgrounds.

To celebrate that, United Ostomy Associations of America is hosting the UOAA 2022 Virtual Ostomy Symposium on Saturday, August 13, 2022 from 10:30 a.m. to 5:30 p.m. Eastern Time (7:30 a.m. to 2:30 p.m. Pacific) including breaks.

This symposium will feature a mix of ostomates, j-pouchers, and medical professionals delivering a fun, engaging, and informative day of learning, laughing, and community-building.

Questions you were too afraid to ask will be answered. Questions you didn’t even know you had will be answered.

In all, 22 speakers will be bringing their expertise on a variety of ostomy-related subjects. (And don’t worry, each session will be recorded so if you can’t make it live that day or can’t see all of the ones you want, you’ll be able to watch them later.)

You can find the full list of speakers and the agenda here.

What to Expect

The virtual lobby will be open at 10:30 AM EDT before the speaker sessions begin to chat, troubleshoot any tech issues and explore the agenda. Ticket holders get an email with a unique link to the event. Attendees are encouraged to enter “lounges” organized by ostomy or continent diversion type (and one for caregivers) to chat or meet with others like you. These will be open for the entirety of the event for those who want to pop in and out during breaks.

Sponsor Booths will also be open throughout the event to give ticket holders the opportunity to talk with representatives of ostomy product manufacturers and suppliers ­– and learn about the latest product advancements. Thanks to all our symposium sponsors including Platinum Sponsor Convatec for helping to make this event possible.

The most important participant for this year’s UOAA Virtual Ostomy Symposium is you.

After opening remarks from UOAA leadership, the symposium will kick off on the Main Stage with Louie Green, a standup comic and recent ostomate. He’s going to share his poignant ostomy journey with a bit of welcoming wit.

Next on the Main Stage at 12:40 AM EDT, Joy Hooper’s Ostomy BUZZables presentation will present the newest innovations and ostomy products available on the market. If there’s something new in the ostomy world, you’ll hear about it here.

Educational Sessions 

Throughout the day, Educational Sessions will run concurrently between the Main Stage where you’ll get to hear from wonderful WOC nurses, experienced ostomates, amazing doctors and dedicated advocates.

Presentations will cover everything from sex and intimacy and traveling the world with an ostomy to nutrition and staying hydrated and dealing with hernias. Other session topics will focus on peristomal skin issues, aging in place with an ostomy, affiliated support groups, and secrets of the big four stoma types.

There will also be a special workshop for young adults. Inspiring ostomates Molly Atwater-Pulisic and Collin Jarvis will be co-hosting the conversation about physical activity, relationships, and mental health for ostomates ages 18-35.

Attendees will be able to submit questions for the speakers during the presentations and the speakers presentation materials will be available to access at you leisure.

After these educational sessions be sure not to miss Dr. Janice Beitz back on the Main Stage at 3:55 PM EDT for a presentation titled If You See a Toilet in Your Dreams, do NOT use it! Emotional Support, Quality of Life and Humor. It will look at the power of humor in dealing with emotional challenges while dispelling some myths and misconceptions about ostomies.

The event will come to a close with a special presentation from Magen Cherry, a j-poucher and winner of the 2007 Miss Texas USA competition. She uses her platform to share encouragement and bring hope to fellow ostomates and j-pouchers coming to terms with their new reality. Fun fact: Magen had a colonoscopy three days after being crowned Miss Texas USA!

Connecting with a Caring Community

Of course, there are going to be plenty of great speakers but the most important participant for this year’s UOAA Virtual Symposium is you. By taking part in this event, you’ll be able to connect with a thriving ostomy community (or j-pouchers or any other type of continent diversion) and help us grow even stronger.

As we all know, living with an ostomy or other continent diversion isn’t always easy. It can be isolating. Sometimes even close friends and family don’t want to hear anything about it. There’s fear of the future and worry about existing relationships.

Many new ostomates want to hide it forever and hope no one ever finds out. But, through organizations like UOAA, they’ll find out they’re not alone and that life with an ostomy shouldn’t be something to be ashamed of, but rather that ostomies are life-savers and that you can join others in a celebration of being alive.

This year’s event is going to be awesome. Questions you were too afraid to ask will be answered. Questions you didn’t even know you had will be answered. You’ll get to connect with wonderful people while gaining inspiration and knowledge that could impact the rest of your life – and the lives of others.

As you can see this is not your typical webinar or Zoom call and the $35 ticket (plus $3.88 processing fee) and sponsor support of UOAA (a 501(c)(3) charity) help to offset the costs of hosting this special event.

All of this is leading to UOAA’s in-person National Conference in Houston in August of 2023. The connections you build during this year’s virtual event can open the door to even deeper friendships when we all get to meet each other face-to-face next year in Houston!

The UOAA 2022 Virtual Ostomy Symposium on Saturday, August 13th is going to be a great time and a great experience. And we need you there to make it even better.

To get all the information, learn more about the speakers, or find out how to get tickets, head to the event website.

By Robin Glover

The recovery process for a j-pouch is just that. It’s a process. It takes time and patience and is different for everyone. For some, it can be relatively easy. For others, it can be a winding path with twists and turns just like the colon that was removed for it.

But one thing is the same for practically everyone: j-pouch surgery offers hope for a return to a life that’s less encumbered by the alternatives. Seriously, who doesn’t want to poop out of their butt again if given the opportunity? Oh, and getting rid of that disease-ravaged large intestine is a plus, too.

What Is A J-Pouch?

In case you’re reading this to research information for yourself, friend or family member, here’s a quick explanation of what a j-pouch is:

Medically known as Ileal Pouch Anal Anastomosis (IPAA) surgery, it involves removing the entire colon and rectum and then connecting the small intestine directly to the anus. The term j-pouch refers to the shape of the “pouch” that’s created when the surgeon folds the small intestine on itself and creates a reservoir to hold waste until it is passed through the anus. It can also be known as an s-pouch or w-pouch based on how it’s surgically constructed. J-Pouch surgery is most often done in cases of ulcerative colitis where there is no disease in the small intestine or as a result of FAP, colorectal cancer or a bowel perforation.

The surgery for a j-pouch almost always involves two or three steps. The first step, and usually the more major surgery, is to remove the large intestine. At the same time, an ileostomy is created that will be used until the small intestine is reattached. This will be a temporary external pouch.

Stages of J-Pouch Surgery

Depending on individual circumstances, the first surgery can also involve removing the rectum and creating the internal j-pouch. However, it can also be its own separate procedure. But either way, the final step is to reverse the ileostomy and connect the small intestine to the anus. At this point, no external pouch is needed and the traditional route of passing stool can resume.

Be aware that the patient has the right to decide between a J-pouch or keeping the ostomy and should know not all temporary ostomies are able to be taken down and not all J-pouches are able to be connected.

Early Recovery From J-Pouch Surgery

It’s an exciting experience when you wake up from the final surgery and see that there’s no longer a need to have a pouch attached to you. What was once your stoma is now a still pretty nasty wound, but one that will heal and become just another proud scar.

Things won’t be working quite yet though. It will be a few days before you actually have a bowel movement. Sometimes it can take longer, but that’s not a big deal. When you’re in the hospital you’ll be monitored and well taken care of. You likely won’t go home until your doctors are sure everything is working correctly, including being able to eat and pass solid food.

Everything that comes out will still be liquid, though. It will be a little bit before you start passing anything even semi-solid. And you might not ever get to that point or only have it happen on rare occasions. There’s nothing unusual about that.

J-Pouch Guide

Diet Right After Going Home

The diet you follow after getting home from the hospital will be communicated to you by your doctor and you’ll probably go home with many guides and resources. Mainly, staying hydrated is very important and avoid raw fruits or vegetables, nuts, whole grain, seeds, or anything else that doesn’t digest in around two hours. Since you no longer have a large intestine, food has much less time to be processed and if you eat a handful of nuts they’re going to come out the same way they went down.

Check the Eating with an Ostomy Guide for a much more complete diet guideline.

But, even worse, it can cause a blockage. Blockages are the bane of a j-pouch’s existence. You need to be careful about what you eat (typically called a “low residue” diet) and chew your food thoroughly. Chew extra. And then some more. Take small bites and don’t take any risks right away. Introduce new foods slowly.

NOTE: Your doctor or dietician will know the best foods to eat and what to avoid for your specific needs. Always follow their directions before anything you read on the internet.

Getting To Know Your J-Pouch

It can take a while after surgery to completely adjust to your new plumbing. You’ll learn what foods are “safe foods” and which to avoid. You’ll also learn about how your j-pouch behaves and how it affects your daily life.

For example, you’ll start to get an idea of how many times per day you’ll go to the bathroom and what consistency you can expect. You’ll also learn what each sense of urgency means and when you need to go to the bathroom right away and when you can hold it. It will feel like you need to go to the bathroom a lot and you’ll probably actually need to at the beginning. But, over time, your j-pouch will stretch and grow to be able to hold more before needing to be emptied.

Ideally, after everything settles down, you will only go to the bathroom 4 to 8 times a day and it will be a simple and quick emptying process.

You’ll Experience Butt Burn

Speaking of going to the bathroom a lot, you may experience what is known as “butt burn.” This is because, on top of going to the bathroom more often, without a large intestine your stool will be much more acidic from digestive enzymes.

It’s necessary to take special care and make sure everything is extra clean. A bidet is a great idea because rubbing with toilet paper can also cause irritation. There are also many creams and lotions you can use to soothe and protect. Zinc-based lotions are a good place to start. And get some disposable gloves while you’re at it.

You may go to the bathroom up to 20 times a day (or more) and experience irritation from going so much. But, it will get better as you learn more about your j-pouch and develop processes that work best for you. In the end (no pun intended), you’ll get to a point where you’re comfortable and know how to manage it like an expert.

Ideally, after everything settles down, you will only go to the bathroom 4 to 8 times a day and it will be a simple and quick emptying process.

It’s Not Always Easy

As mentioned, j-pouch recovery is a process. At the beginning, there will be accidents (typically nighttime) and discomfort. It’s a whole new way of digesting food and your body needs time to adjust. And you will need time to adjust to it too. It’s a major change.

Be aware of possible complications such as pouchitis and tell your doctor if you have more frequent or blood in your bowel movements.If you have a j-pouch or need one, you’ve already been through a lot. You know you’re resilient and can make it through almost anything. This is just another step in your journey.

Don’t let any of this discourage you. There’s a reason you decided to get a j-pouch and there’s a wealth of resources and support out there to help. Everything you will experience has been experienced before and the j-pouch community is always ready to help. But keep in mind that social media is often a place to vent so you might see more negative than positive posts.

So focus on the good, be patient, and look forward to enjoying pooping out of your butt again!

 

 

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

Urostomy and Continent Diversion Patients Find Support and Education from Peers at UOAA.

By Ed Pfueller, UOAA

May is Bladder Cancer Awareness Month. According to the American Cancer Society, this year more than 80,000 people are expected to be diagnosed and approximately 17,000 will die as a result of this disease.

Bladder cancer survivors are a major part of the ostomy community represented by United Ostomy Associations of America (UOAA) through support groups, educational resources, and national advocacy.

For those with this cancer who require their bladder to be removed, a urostomy or continent diversion may be necessary. A urostomy is a surgically created opening in the abdominal wall through which urine passes. A urostomy may be performed when the bladder is either not functioning or has to be removed. There are several different types of surgeries, but the most common are ileal conduit and colonic conduit.

Be Prepared

Our new ostomy patient guide is available to all who need it and it is a great overview of what to expect. Our urostomy guide has even more in-depth information. If you have a medical question contact your doctor or nurse, in you have a quality of life question- UOAA likely has the answers.

If you or someone you know is in need lifesaving ostomy surgery remember-you are not alone. 725,000- 1 million people in the U.S. of all ages and backgrounds live with an ostomy. Connecting with UOAA resources is critical. Especially seek out one of our almost 300 UOAA Affiliated Ostomy Support Groups in the U.S. before, or shortly after, your surgery. Peer support and preparation can put you on the path to success in what will be a challenging time both emotionally, sexually and physically. Ask if the hospital has an ostomy nurse and insist on having your stoma placement marked before surgery. These and other self-advocacy tools are paramount and outlined in our Ostomy Patient Bill of Rights.

Other surgical options after bladder removal may not require an external pouching system such a continent pouch, or orthotopic neobladder. Continent diversion surgery needs lifestyle consultation and thought before being seriously considered since these surgeries are extensive and have possible complications including incontinence.

Read more in-depth here about continent urinary diversions such as an Indiana Pouch. This uses the creation of an intestinal reservoir with a catheterizable channel that is brought from the reservoir to the skin with the creation of a stoma. The Indiana pouch has become the predominant urinary diversion for patients who desire continence.

Another diversion is the Neobladder. The creation of a reservoir (neobladder) that is surgically connected to the urethra. It is created for those who do not want a stoma and wish to void per the urethra.

Before surgery, it is also best to learn some facts about living with an ostomy. After the healing period outlined by your surgeon you can swim, bathe, be intimate, travel, and embrace a new normal life. For more information read our Tips for a Succesful Recovery After Ostomy Surgery and use it as a roadmap for success.

Urostomy Tips

For help getting a good night’s sleep with a urostomy, night drainage systems are available to collect and store urine so can sleep without having to empty your bag multiple times during the night.

Unlike some people with gastrointestinal ostomies there are usually there are no dietary restrictions and foods can be enjoyed as before. It is suggested that 8-10 glasses of fluid per day be consumed to help decrease the chance of kidney infection. We also have information on how to retain an acid PH balance of your urine.

Sexual function is influenced by the reasons for which the urostomy is performed. The urostomy itself should not interfere with normal sexual activity or pregnancy. UOAA Affiliated Support Groups are available for individuals and partners seeking emotional support. Our Sexuality and Intimacy Guide may be helpful in facing any new challenges.

Connect with a Community

If you have not had the chance to connect with others with a urostomy, UOAA’s 7th National Conference is a unique opportunity. Urostomates will find camaraderie and education with others from around the country. A few of the urostomy specific sessions include a Basic Urostomy session with Dr. Edouard Trabulsi, MD, FACS and a urostomy meet and greet. There is also a “Ask the WOC Nurse – Urostomy” session with Marie Brown-Etris, RN, CWOCN and other general sessions to get your urostomy or continent diversion questions answered.

This Bladder Cancer Awareness month you can send us your photo and urostomy survival story on social media and we may share your patient story. You may also be interested to know that people also have a urostomy due to spinal cord injuries, malfunction such as chronic infection of the bladder and birth defects such as spina bifida.

Celebrate Bladder Cancer Awareness Month and connect with the Bladder Cancer Advocacy Network (BCAN) on all the ways to make an impact. You’re also invited to join with UOAA for Ostomy Awareness Day on October 5, 2019 or participate in one of our Run for Resilience Ostomy 5k events around the country. We hope you’ll consider a donation, joining our advocacy efforts, or taking part in a support group to give back to the next cancer survivor in need.

 

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.