Genuinely considering urinary diversion surgery

[Pongoandperdi15]

I've had 7 urinary tract infections in the last 6 months and the doctors keep discussing urinary diversion as an option I was against the idea at first but now I'm starting to lean towards it. I've had enough on routinely getting infections, I'm done with intermittent self catheterisation it just causes me severe discomfort but I've been told I'm not allowed to stop otherwise I might end up hospitalised which is far from what I need right now. I've just had enough right now I just wish my incontinence would go away and I could be normal. I've got another my 3rd cystoscopy booked for the coming month it was postponed due to my latest infection don't know what they are looking for this time third time lucky I suppose

 

[Edgewater]

Very sorry to hear that you are having these issues. Being IC is something that is difficult to explain to those that are wearing for comfort.
When faced with such a choice, I commonly list a simple Pro and Con chart to place everything in a visual for mat. I find that it really helps me to see the choice from a different vantage point, which always helps me.

Long ago, I stopped providing advice to others with this kind of choice as there is just so much that is different with each individual.
Infections are no joy and I can understand your frustration.

 

[Lukas]

Yeah, I couldn't imagine the amount of pain and suffering you have had to deal with thanks to those UTIs. If they think it will improve your quality of life, then I say no question go for it.

Cover all of your bases and ask plenty of questions before committing to it, as there is always risk with a procedure. But if your doctor's are already discussing it then they may think the benefits may outweigh the risks at this point.

 

[ltaluv]

I'm sorry you're having so much trouble with infections. What antibiotics have they given you? Have they done a cultists to find out what bacteria is causing the infections?

In 2018, I was hospitalized for something else, but when I came in through the emergency department I mentioned that I thought I'd just started developing a UTI as well. They did a culture, and found that it was an antibiotic-resistant variant of E. coli. I ended up getting moved to an isolation wing, and was hospitalized for an entire week on IV antibiotics, since that was the only thing available that would kill this particular bug.

If they haven't cultured the bacteria, they need to. It's entirely possible that they simply haven't fully cured the original infection, leaving it to come back every few weeks.

I brought up urinary diversion with my former doc as a solution to my interstitial cystitis, and the idea was not well received at all. I need to discuss it with my current doc, though. I expect to lose my colon in the next couple of years and have a permanent ileostomy, and I don't see that having to manage two bags is much worse than having to manage one. I'm tired of pain, incontinence, constant cystoscopies, and self catheterization. A urostomy seems like it would be a relief.

 

[Pongoandperdi15]

Italuv sounds like you've been though it all, hope you get to make some progress!
I've had cultures done and had allsorts come back from pretty standard mixed growth and E coli results to more what I call exotic ones like pseudomonas aeruginosa & my most recent one raoultella planticola all so far have responded to antibiotics. I don't understand how these bacteria are colonising my bladder when I catheterise I clean my hands and my self thoroughly a small part of me wonders if the mixed growth ones that were at the start consisted of all three of these bacterium and they have hid in my bladder cells waiting for the right moment to hit me because it's been one after the next after the next, it's like one course of antibiotics finishes I'm ok for a few days then boom another infection kicks off.
I've been presented with a few options one being sacrial nerve implant to see if they can bring my bladder back to life but what if it doesn't work then it's more surgery to remove it.