Tag Archive for: ileal conduit

Finding Bladder Cancer Support Everywhere

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Younger women are not the typical bladder cancer and urostomy patients, but a variety of support and resources do exist to help you

By Liz Hiles

In August 2016, when I was diagnosed with bladder cancer, there was very little information about WOMEN and bladder cancer, let alone finding adequate support for anyone with bladder cancer.  Receiving a diagnosis that I hadn’t even heard of before, didn’t know the symptoms for, and had never heard of anyone I knew who had faced the diagnosis, my first thought at 40 years old was, “I’m too young to die.”

I really thought that I would surely die when I received my diagnosis, especially since I had been going to the Emergency Room periodically for years and was gaslit, ignored, and brushed off every single time. I was a deer in headlights and didn’t know what was coming or where to look for what I needed.

Going into a cancer diagnosis, many have cancer blinders on — meaning the only thing they can think about is cancer, treatment, and trying to survive. For 8 months to a year, I lived with those blinders on. I was too exhausted to think outside of any box or do any extra activities. When I went back to work in April 2017, it was all I could do for several months was make it through the work day and get home. Outside of that, I slept deeply.

While I was waiting for surgery, I tried finding a bladder cancer support group near me. There was absolutely nothing. When I asked my urology oncology surgeon, his only suggestion was to “try Facebook.” Yes, there absolutely are lots of groups on Facebook. I’m always a bit wary of those, as they are not always run ethically and are never moderated by licensed therapists or social workers, so the information and support you get is not always accurate or appropriate. I proceeded with caution there. 

At some point during treatment, I found some support websites and even an online chat via website or app that I was able to utilize. All focused on cancer in some way. They were moderately helpful, but I didn’t feel a strong connection, inclusivity on multiple levels, and a deeper understanding of my experiences. After I struck out at my local Cancer Support Community location, I recalled my WOC nurse telling me about an ostomy group. I couldn’t remember the name or find the information she gave me, so I called her up. After a brief but extremely helpful conversation about several issues I was having, I had the name of my local UOAA Affiliated Support Group written down and sought them out. 

That’s really when the support factor clicked in for me. The first meeting I went to was a social one, at a local restaurant. We met for dinner. There was one gentleman who like me, was also a bladder cancer survivor with a urostomy. Everyone else had fecal diversions of various types. Still, I found more compassion, empathy, and understanding for everything I went through there than I did from any other source I had tried to date. 

Support is like putting together a salad and tossing it well. A salad is horrible with just lettuce – you need lots of other ingredients to make it delicious!

Since that time, I’ve expanded my support circles, finding the right mix of cancer, bladder cancer, young adult cancer, ostomy, and spoonie support. I have made connections via the internet, Zoom, and even in person at events like UOAA’s National Conference. My experiences have helped me through some of the most challenging times of the last 10 years.

When it comes to support, my advice to anyone facing a new diagnosis is always two-fold:

  1. Welcome support into your life. You will need it. 
  2. Try a plethora of different support venues: via social media, Zoom, or in-person. Try everything at least twice before making the decision of whether or not you will fit in with the group. 

No single group or organization will fit all of your resource or support needs. Support is like putting together a salad and tossing it well. A salad is horrible with just lettuce – you need lots of other ingredients to make it delicious!

Throughout the years, I have managed to come together with individuals and organizations like UOAA to build a wonderful support network for myself. Without support, I would not have made it this far. Without support, I would not have come into the various opportunities that I’ve been fortunate enough to experience and collaborate on. 

In January 2026, I had the opportunity to come together with the Tigerlily Foundation and fellow survivors, Dee Masters and Brittney Tellekampto to bring bladder cancer to the forefront of conversations in women’s health and bring more awareness to the disease beyond the stereotypical patient: old, white, chain-smoking, male. 

The organization chose to highlight the three of us various backgrounds and experiences. 

The three of us were flown into Nashville, TN, for a weekend retreat to film our personal bladder cancer stories and a panel discussion while getting to converse, support, and bond over being launched into a mutual club that no one ever wants to join: the cancer club. 

Support continues to help make my life complete. It drives me through the hard days and inspires me to pay acts of kindness forward. 

Dee Master is a woman of Indian descent living in the Knoxville, TN area, was diagnosed at 33 with a recurrence 4 years later. She has experienced multiple procedures, including numerous cystoscopies, undergone various treatments, and has managed to retain her bladder. 

Brittney Tellekamp was diagnosed  with Stage IV Metastatic Bladder Cancer at the age of 28 and underwent a radical cystectomy, full hysterectomy, lymphadenectomy, and received an ileal conduit (stoma). She is speaking out with TigerLilly about sexual health issues for young women with bladder cancer. 

One of the most common themes we noticed was the challenges we faced in finding support that fit our needs and how rare it was to find other young adult women in the bladder cancer realm – especially those willing to talk about their journeys. 

Finding support is a critical part of surviving treatment and succeeding in survivorship. Yet it is an area that is often overlooked or ignored by the clinical teams who treat cancer patients. 

On May 1, 2026, the Tigerlily Foundation launched its brand new bladder cancer awareness campaign with a new resource page going live on its website. Throughout May and June, more information will be shared, along with video releases of our stories and panel discussion. The organization also plans on concentrated social media posts in October in support of ostomy awareness as well. 

Support continues to help make my life complete. It drives me through the hard days and inspires me to pay acts of kindness forward. 

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Liz is now 50 years old. A lifelong Cincinnati resident, she works in a school system by day and in her free time, she spends it advocating for various health issues, including bladder cancer, young adult cancer and ostomies.  To connect with Liz, go to her Linktree.

Follow the Tigerlily Foundation on Facebook, Instagram, LinkedIn, TikTok, YouTube, and Bluesky to connect with this campaign as it rolls out. To To connect with Dee, find her on Instagram @mamadragon9.

UOAA is Here for Bladder Cancer Survivors

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Since its inception 20 Years ago 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

Each May is Bladder Cancer Awareness Month. The American Cancer Society estimates about 84,870 new cases of bladder cancer in the United States for 2025 and about 17,420 deaths from bladder cancer (about 12,640 in men and 4,780 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.

For example, Deion “Coach Prime” Sanders recently went public with his journey and life-saving bladder creation surgery for bladder cancer.

A urostomy or an external ileal conduit, is 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 welcome at all UOAA events and supported and empowered by UOAA.

UOAA’s Living with a Urostomy Guide 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.

Having access to an ostomy nurse is critical to solve issues before they worsen. You can use our Outpatient Ostomy Services Finder to find a clinic near you or consult a certified nurse online with our Virtual Ostomy Clinic provided by The Wound Company. We also have information on what nurses need to know about urostomy management.

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 2025 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.

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.