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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.

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.