I am new here. I have been in diapers since 2022. Radiation cystitis caused me to have a urethroplasty in 2021, and they could not save my sphincter. I have been an open faucet for 2 years. I have had 9 UTIs in the past 2 years, of which 4 occurred in the last 6 months, and am now CRE (antibiotic intolerant). I have been hospitalized twice in the previous 5 weeks. The last UTI was with sepsis, and the doctor said it is time to quit treating the symptoms and treat the source. Urostomy surgery is scheduled for July 30, and I am scared this is not the right thing to do. I was on a suprapubic catheter for 4 months in 2023, and it wasn't very nice. I had infections at the suprapubic site and rashes on my leg where the bag and straps were positioned. I am allergic to latex. Do you think the urostomy bag will be as cumbersome as the suprapubic catheter? Thank you!
Welcome to the site. Hopefully, someone with a urostomy will hop on and share their experience. However, as far as surgery is concerned, you are the only one who can make that decision. Good luck and make an informed decision.
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I appreciate your support. My decision has been made to move forward with the surgery.
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Prayers for you. Please come on and tell us how your recovery is going.
Hello kappleby!!!
Oh, finally I can be of real help to someone.
The short answer is: you will find it will be much much better with your stoma and bag!
You and I have a similar story... I also spent 4 years suffering from an increasingly severe interstitial cystitis: spasms, pain, bleeding, and incontinence... all of them going from initial to mild to full-blown...
Nearly 3 years!
Until my bladder tissues mutated into cancer that infiltrated muscle and extended to the urethra... so the only option was urostomy.
Apart from the difficulties of the first couple of months, when you'll be sore from surgery and extremely clumsy with your new attachment... then it will go like a breeze!
No more pain and no more meds!
You'll still have some bad days when the bag will leak and of course, it will do so in the least opportune moments... but trust me: coming from our past... this is heaven!
Just a small suggestion: choose carefully where the stoma will be placed... height and distance from the belly button...
Mine is a little too close to it and that's where leaks develop for me.
The ostomy nurse will help, or ask her to give you a 1-piece bag and fill it 1/3 with water and stick it to your belly for a day...
So you'll make an informed choice ;-)
Words of Encouragement from Ostomy Advocates I Hollister
Welcome to the site. I am new here too. I just had urostomy surgery on June 7 due to bladder cancer, so I am 4 weeks post-op and still recovering. Every day gets a little bit better and easier. There are definitely some challenges that are still taking time to get used to. This is way better than the pain and challenges I was experiencing before the surgery though. You are going to do great and feel much better after it's all said and done. You got this!
Thanks for the encouragement. I did not know they gave you a choice of location. The only thing the surgeon told me was about 3 fingers below your lowest rib. I will surely ask before surgery. Thanks.
Thanks, Fishsticks! Hope you are recovering nicely.
Well, tomorrow is the two-week anniversary of my new stoma. All went well as I only spent six days in the hospital. I've been home for about a week now and, except for wanting to sleep 18 hours a day (across several naps and nighttime), all is good. I am disappointed in my first order of supplies as the supplier (Comfort Medical) did not give me the same bags I came home from the hospital with. I read them the item numbers and they substituted a different brand. I will address this tomorrow. Here is the question for the group: Should I be sleeping this much?
Learn what impacts wear time and how you can extend it.
Hello kappleby53,
That is great news that your urostomy surgery went well. Hope you are adjusting and getting used to the new lifestyle. I know all too well about the challenges and am still learning lots at 12 weeks post-surgery. As for being tired and wanting to sleep all the time, I did not experience that. Everyone is different, though. It took me about 8 weeks before I started feeling close to normal after the surgery. This included the week in the hospital. So in 4 more weeks, you should be feeling good and have a pretty good handle on things. Take care!