Need advice on urostomy options for keen cyclist, skier, runner, hiker ahead of bladder removal surgery

Hi everyone,
I just found out I'm going to have to have my bladder removed after a return of bladder cancer. My focus is on being able to get back to my very active lifestyle of road biking, downhill skiing, running, and hiking, and so I want to hear from those with continent (internal pouch) and incontinent (external pouch) urostomas on the pros and cons of each for these activities. I have a couple of months until surgery will happen, so I'd love to be able to hear from you, talk with you, and learn from your experience. I plan to be highly active for several decades to come, so how can I optimize that by making the best surgical choice? Thanks! I look forward to hearing from you.

I have a colostomy, so I'm no help to you, but I wish you the very best with your surgery and recovery!

Hello T - I have had an ileal conduit/urostomy for 14 years, so what follows is from that perspective. I was fairly active before surgery with golf, squash, and fly fishing as my major pastimes. I had to give up squash and golf as my core strength disappeared, so anything you can do prior to your procedure to increase core strength would be beneficial. I am pleased to report that I can, and do, enjoy fly fishing year-round all over North & South America plus the Caribbean. Most trips are walk & wade, and we tend to cover about 2.5 miles of river in ankle to knee-high water, so there is a fair bit of physical effort involved. The rewards, however, are huge! Certainly for skiing, hiking, running, and probably cycling as well, you will need a good belt/support/hernia protection system. Also, being as fit as possible prior to your procedure will stand you in good stead afterwards. Yes, there are days when having 'a bag' is a pain in the butt; on the other hand, before surgery neither of my sons were married, and now I have 4 grandchildren (two I coach in soccer), so on balance, the surgery was worthwhile. Pleased to answer any questions. Best, Bryce

Good day: Bruce here, from Nelson, BC, Canada. Like you, I had my bladder removed 22 years ago. I've been peeing in a bag ever since. It took me a while to get used to both a) the whole idea, and b) living with the "bud," bag, and initial complications: fit, sticking, etc. I had a short (3-month) period of adjustment, then back to life as I knew it. I've completed 101 scuba dives (I open the exit valve before entering the water. As everyone is wet after a dive, no one notices. And I don't wear a wetsuit). I've completed 7 sprint triathlons, play pickleball at least 4 times a week, swim, bike the mountains around the area, etc. A few people know about my bag, but these days at 70 years of age, I really don't care who knows or not. Travel is easy; I always take at least one complete "change" set on the plane, just in case. In 42 overseas trips, I've never had to change on a plane. A change lasts me 3 days, so for a 2-week trip, I would take 7 or 8 sets of appliance changes with me. Europe is easy to get extra stuff in, depending on which system you use. Some Caribbean islands are well stocked, some less so, but Cuba has none. The hospitals in Cuba are well staffed with knowledgeable people, but no extra urostomy supplies there. Aside from that, all good. I look at my urostomy this way: I'm alive, I can do everything I could before (I regularly thank the inventors of Viagra, wink wink) and my operation, follow-up, and most supplies were/are paid for by the BC medical system. Yes, it will take you time to adjust. But with patience and some help from whatever ostomy care nurses or similar you have access to, life will go on almost as it was before. Good luck!

I have an ileal conduit, urostomy, with an external pouch in addition to an ileostomy. (25 years) My biggest daily challenge is hydration. But I'm still pretty active with yoga, martial arts, and seasonal “mountain” biking. I change the appliances about every three days, bags daily (2-piece appliance wafer/bag). Before adapting to this routine, I had about a dozen UTIs and urosepsis once after a trip to the American Southwest desert in July. I avoid elevation above 11,000 ft and American Southwest desert climates. Ask your surgical team where the stoma might be placed. For me, stomas are right below (left and right of the belly button). Even though I mountain bike (more like hills where I live), it would be a challenge for me to be a cyclist with my bags for anything over an hour. I'm usually hydrated by 11:00 am and keep any physical activity for the afternoon. With an ileal conduit, it's important to empty the bag since physiologically it's a two-way street; bacteria can creep back in, so at night I “hook up” to a bedside bag.

Words of Encouragement from Ostomy Advocates I Hollister

Lost my bladder to cancer in 2007 along with a kidney. Went back to work in a factory where I walk about 5 miles a day moving parts around. I installed new windows in my house along with siding. Wife and I fish a lot and camp. I change my Buddy about every 7 days and wear a belt all the time except in bed sleeping. So I have an incontinent (external pouch) not sure if I would like putting in a catheter every time I need to pee. I will be 73 this year so Buddy and I have been together for 16 years. Rough year with chemo and operation but good now. So that is my thoughts, any questions feel free.

Everett

I have an external pouch too since 6 months due to bladder cancer.

I fought the idea with all I had in me at the beginning... I didn't want a bag hanging from my belly at 48 and with a "newish" partner in my life (been together since 2 years before surgery and living together since 1 year).

Been researching and meeting surgeons all over Europe: I'm Italian and living in Spain, so those were my first choices, but also France and Switzerland....

In Europe, the continent reservoir/Mitrofanoff or Kock or Indiana procedure is not the suggested go-to choice anymore... in some places, they literally do not even offer the option.

What I've been explained, to convince me to accept an external bag (ileal conduit) is:

PROs - Yes, you see nothing from the outside and the amount of "things" you need is reduced to a lubricated tube to empty your new pouch bladder.

CONs - You would need around 100 centimeters of intestine instead of 15/20 to create the bag (with all possible issues in terms of nutrient absorption). It then needs to be trained to expand to max capacity/elasticity, so emptying on a schedule of every 2 hours, then 3, then 4, never more than 6 maximum (which means you'll never have a full night's sleep). You need to stick a tube in an opening that resembles a butthole... seems easy but when you do it half sleepy in the night or when you grow older and have less manuality, the risk to create ulcers or worse increases tenfold. Also, with the passing of time, uric acid will penetrate from bowel tissue into blood flow.

So, in the end, I got my bag and honestly never regretted it once!

This was a good source of info for me:

https://www.sciencedirect.com/topics/medicine-and-dentistry/continent-urinary-reservoir