Urostomy Surgery: Tips, Tricks, and Honest Experiences

Hi everyone! 
I'll be turning 22 five days post-op, so I'm rather young! Just wondering how everyone found surgery itself/recovery. Any must-have products, tips, or tricks? 
I'm absolutely petrified, and I know it's going to hurt so badly. Please, please do not sugarcoat it to make me feel better. I need to be mentally prepared :) 

I did not have a urostomy but an ileostomy. I can assure you that they will keep you well-medicated with painkillers in the hospital and usually send some home.

Don't be afraid. I don't know your reason for the urostomy, but I'm sure it's in your best interest and you're going to feel better.

Hopefully, some urostomates will chime in soon to give you better information.

What hibiscus said, for sure. Sit tight.

The surgery and recovery will be over before you know it.

Many products out there. Tried and true. You will find what works for you. Give yourself an adjustment time.

Remember, you had to crawl before you started walking. Like all of us. All in good time.

Wait until you want to start dating 🤦‍♂️. We are here for that help too. 👍

Hi Sezza, welcome to the site. Like you said, you're young and probably in pretty good health except for needing a urostomy, so you should heal a lot quicker. If the surgeon is able to do it laparoscopically with just a few small incisions, that's even better. Good luck.

I had a colostomy emergently and was not prepared. When I was discharged, I knew little to nothing about what supplies I would need and how to care for my new equipment. Ask a ton of questions, get involved when they clean, drain, and change the base plate, bags. Ask about different brands, bags, etc. Call all of the companies who make urostomy supplies and talk to their nurses and get samples to see which work for you.
Ostomies are intimidating, but you can handle it! Ask questions here and others will give you their experience!

Good luck, keep us informed! Don't let this slow you down!

Clint

Hi Sezza,

Here are a few things I've learned from having a urostomy for 15 years. You probably will feel miserable for the first month after surgery, but it gets better. Rely on your wound nurse, doctor, supporting friends, and family. If you have an incision, do all that is possible to prevent infection - the wound nurse will help here - but leave it alone and let the wound heal. Post-op, take time to think about the type of supplies and brand you are most comfortable with - a lot of trial and error here, but be patient (pun intended) with yourself. I found it useful to assemble kits in medium zip lock bags, and they would include a barrier, wafer or paste, barrier extender if used, reinforcement tape if used, flange belt, adhesive remover packet, washcloth, and a couple of paper towels. Make up 5 at a time, and you will always have a change ready. Used material goes in the zip lock for easy, odor-free disposal. Positive mental attitude is crucial - YOU can deal with this!

Best,

Bryce

PS: Pob lwc

Hello Sezza, female urostomate here....

No worries about the pain, that will be taken care of in the hospital and also when you go home (they'll give you a prescription) saying what kind of surgery method, so I'll opt for worst case: mine - open surgery....

You will have a tube in your belly, under your skin, to drain away all excessive fluid from tissue inflammation... keep it as long as they are willing you to keep it and do not rush home on your demand...

I felt like a whale for around 3 weeks once at home: huge belly that was making all movements difficult... and sleeping too as I couldn't turn on my side.

Hello Sezza, female urostomate here....

No worries about the pain, that will be taken care of in the hospital and also when you go home (they'll give you a prescription) saying what kind of surgery method, so I'll opt for worst case: mine - open surgery....

You will have a tube in your belly, under your skin, to drain away all excessive fluid from tissue inflammation... keep it as long as they are willing you to keep it and do not rush home on your demand...

I felt like a whale for around 3 weeks once at home: huge belly that was making all movements difficult... and sleeping too as I couldn't turn on my side.

I had my bladder removed in 2009 for cancer. I was thrilled when the surgeon reported that the cancer was encapsulated, so there was almost no likelihood of spread. My favorite cousin (an ER nurse) came and spent a couple of days at my bedside as I adjusted to having a stoma. I will always recall her comment that I would no longer have to find a bush to hide behind to pee; I could stand up like the boys to empty my pouch.

Humor will get you through this, so laugh at anything and everything you can.

I had open surgery for both a urostomy and ileostomy at age 23. The long-term maintenance and complications from the urostomy for me are much more complex - UTIs, year 7 uroseptic, hydration is a challenge. Preventative cranberry supplements and D-mannose + constant hydration seemed to help. In the short term, the first year out of surgery, I could walk and move around in a couple of months and was interviewing for a new job, although sitting normally and doing yoga took years to get back into. The initial months I had trouble sleeping with the drains, boredom, and painkillers. Invest in pillows (for the ride home from surgery). There's an art to arranging pillows when you are in the hospital and get home. The home nurse can really help you with ostomy hacks and figure out what works. In the long term, you will be just fine considering you are already here asking questions. Meeting other cancer survivors, sharing my experience, nature art, and all helped me heal in body and spirit.

Hey! You'll be fine. I had my ileostomy at 26 and I healed so quickly. Out of all the surgeries I've ever had, it was the easiest and least painful. You will honestly be so okay—it doesn't hurt really bad either—it's more of a soreness.

I have had an ileostomy for 50 years, since I was only 20. I still remember when I was told I needed this. I cried and cried. Humor really helped. I'm sure that no amount of advice from any of us is going to calm your fears, but you will be okay when you can accept your new normal and feel grateful for living your life. I have lived a wonderful life in the last 50 years that I wouldn't have had if I didn't have the ileostomy. Best of luck to you. Let us know how you are doing. God bless you.

Get samples from every company you can find on Google. Be as proactive in finding the right products for you as possible and don't settle if it's not perfect, as there are many products and combinations of products out there to make life easier.

I can't do without my ring seals, adhesive remover wipes and spray, and my flange extenders. The ring seals ensure a good seal around the stoma. The adhesive wipes help clean old adhesive from your skin during bag change so nothing interferes with the stick of the new bag. The spray helps remove the bag without damaging your skin, and the flange extenders help seal the flange on the outside to help prevent leaks.

I had laparoscopic surgery and didn't find the pain too unmanageable. In fact, I was surprised by how little pain there was. They leave local anesthetic in the wound during the operation to help you immediately upon waking, and there is plenty of pain relief on the ward afterward. If it's done laparoscopically, then there are limited surface wounds, and the bowel has few pain nerves. The worst bit for me was getting rid of the air they pump into your abdominal cavity during the procedure so they can see what they're doing. Take in a bottle of mint cordial to sip to help with that. Get moving as soon as they let you after surgery, as it all helps with healing and recovery. Plus, it makes you feel better.

Good luck x

Emma

Hello Sezza,

I am 51 and had my urostomy surgery just recently on June 7, 2024. I was actually in the hospital on my birthday. I am now 4 weeks post-op and am recovering well. I was in the hospital for 6 nights and had my bladder and prostate removed. At your age, you got this. Rooting for you!

Todd