Portraits of the interviewees float in front of diagrams showing different urinary diversions.

Ask the Advocate: Advice around Reconstructive Bladder Surgery

We asked the ostomates among our patient leader team, "what advice would you give someone who was feeling unsure about reconstructive bladder surgery?"

Our group shed some invaluable, down-to-earth perspectives from their experiences of living with battle bladder cancer, making compromises, and turning lemons into lemonade.

Linda

My advice is to speak with others who have actually had the surgery.Meet with them if possible.

Ask them to show you a bag, catheter, or other items you would need after surgery. Ask any and all of the questions. Find out about possible side effects, changes, and limitations. Ask about things that might happen down the road so you have that awareness and can take preventive measures, like hernias.

Make sure that the decision is the patient's and not that of the family because the patient has to live with the aftermath.

Understand that the recovery time can vary greatly between people depending on surgery and diversion choice, age, prior fitness, and more.

Do not over-research and do not listen to people who have their bladder but profess to know all about how it is to live without one.

Understand that this surgery may save your life.

Laura

My situation left me little option, but always know you have a choice. My cancer was very invasive and high grade.

With the lower grades, there are other options where all or part of the bladder can be kept. If the hesitation is only the idea of an ostomy even if the operation is the best thing for you, there really is life after ostomy surgery.
There is more and more support available to future ostomates to help with the journey.

I live life, work full-time, travel long haul whenever I can, and generally live a very normal life.

Paul

Get to the real reason why you are on the fence.

Vanity? Not wanting to admit being "sick" and vulnerable? Worried about managing the new normal of possible pouches? Fear of making the wrong decision?

Until you understand the real reason for your hesitation you can't really dig into what decision to make, in my opinion. Everyone's lifestyle, budget, and diagnosis are different and that leads to different decisions.

What is your priority?

I think you have to ask, "Will this decision give me more time with people I love and give them more time with me?" If yes, do it. If not, then it is an issue of quality of life. Only that person can make that decision.

For me, it wasn't even a tough call. Life - or have drains, catheters, pads on the bed, pads in the pants? Life wins every time.

Liz

Don't wait. The longer you wait, the harder it is and the more trials and tribulations you will have to go through before you get some relief. Dive in headfirst, accept it, be grateful for it, and take ownership of it as soon as possible. After a while, you won't even miss having a bladder.

Sometimes it will be hard

Also, be kind to yourself. It is not all going to be all sunshine, rainbows, and puppy dogs, as my medical oncologist says. You will be relearning how to deal with life and how to manage an ostomy.

This takes a lot of time and energy and for each level of treatment you add, you will need longer to heal, adjust and get back to how life was before. So, be as kind to yourself as others are being to you.

Ostomy support groups

Join a local ostomy support group - regardless of what diversion you get! Those people will understand what you are going through and be able to give you even more support as you go through the journey.

Wound, Ostomy, and Continence Nurses Society

Also, many times the local WOCNs [Wound, Ostomy, and Continence Nurses Society] are actively part of the local support group. They can give you guidance during meetings without actually scheduling a clinic appointment.

Making friends with the WOCNs is a great way to have clinical support any time. Many of them go above and beyond for their ostomy patients.

Deciding on a bladder cancer treatment

When it comes to deciding on the appropriate bladder cancer treatment for you, its important to remember what you want to get out of your final result.

No one said it would be an easy decision but there are people and support available for anyone entering this battle.

Connect with other ostomates and urinary diversion members!Have a question? Ask another ostomate - we’re here for you!Visit our ForumsShare your cystectomy and diversion story! It could help someone else feel less afraid.Share Your Story HereRead REAL Stories about Living with a Urinary DiversionCheck it out!

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