I’m 27 & don’t have a bladder. AMA

[Bubblemonkey]

I’m bored, come quiz me 😂

Just... how?

Was it congenital or from a trauma? If congenital, when was it discovered?

What impact does this have on your day to day life

@RogersVideo — I have a stoma bag now for urine. My kidneys are connected to a piece of bowel.

@Elouera — I had interstitial cystitis. I was on morphine & other strong painkillers to try muddle through. It was a final resort & luckily things are so much better.

@maa1992 I have a stoma bag to change every few days, other than that.. it really doesn’t have any impact. I’m a functional human being now, rather than being a drugged up mess.

I didn't even know this was possible! Glad life is easier for you now op.

I've been suffering for what the docs think is interstitial cystitis for 3 years now. Although I am on long term antibiotics as now seeing prof Malone Lee who thinks it is a bladder infection.
I've been thinking of getting my bladder removed but it seems like a huge step. How did you come to the decision? You are still quite young. Xx

Usually done for bladder cancer, @bobstersmum. Major surgery, long recovery. I’m a year post op & only just feel to be turning a corner now.

Gosh, that sounds tough. I've read how painful interstitial cystitis is.

You mentioned 'drugged up mess' - are you still taking painkillers? How hard was it to reduce your dosage? Do you think that you got the right help in this regard? (lack of help re prescription painkiller addiction/ reduction has been in the news today)

What the what? This is a result of cystitis?

Been off all meds including my pre op morphine since about April last year, @TheSpottedZebra ☺️

It’s chronic bladder inflammation I think? @managedmis

Just about to hit the gym then I’ll come back with a proper response, @Amimissingsomethinghere. It’s been a long slog

How long did it take for you to get this diagnosis? Did they think it was something else first? Do you have or did they think you have endometriosis? (I've heard symptoms are very similar).

I was told it was normal catheter irritation to start with, @mumao till they did a cystoscopy & saw I had pin prick bleeding all over my bladder. Can’t remember how long, but I’d been having problems a good few years beforehand. 8yrs at the time of having my bladder removed.

@Amimissingsomethinghere my bladder doesn’t work. At all. Full stop no function. At 18 I ended up in hospital unable to pee... long story short, my bladder deteriorated to the point of not even contracting. I got taught how to self catheterised which I did for 5yrs until it became impossible either because catheters would either get stuck in my urethra, or they wouldn’t go in at all. I eventually had a suprapubic catheter put in which was fantastic at the start then it all deteriorated. At one point, I was on antibiotics monthly for systematic infection symptoms... high temperature, raised pulse, low blood pressure, kidney pain, blahblahblah.

My gp wrote to my urologist for some input cause she didn’t have a clue what to do with me. Once I had my appt & saw the urologist, I asked about long term management, he sent me for some testing which showed my bladder was fucked.

Went back to clinic a few weeks later for a proper follow up & my urologist recommended cystectomy & urostomy formation rather than a mitrofanoff.

I’m a year out & I’ve had 2 urine infections & I’m legitimately the healthiest I’ve been in about 10 years. Just before surgery, I was drinking about 6 litres a day just to try put out the burning in my bladder.

Was your bladder removed as part of the procedure or is it still in place but bypassed?

Definitely removed, urethra was left alone, @Artinsurance

Really interesting thank you for sharing and glad things are improving for you

Wow that's such a tough time you had, great to hear you are on the upwards.

Woah this is massively freaking me out as I'm awaiting cystoscopy and kidney scan after 15 years of battling constant cystitis and bladder infections. I've been told by the urologist that they dont call it interstitial cystitis anymore but 'painful bladder syndrome' and I'm on long term low dose antibiotics until they figure out what's wrong with my bladder finally. Never in my wildest dreams did I imagine your situation was a possible outcome. Christ

Ic/pbs/burning pits of hell. Sums it up nicely @yorkshireteaspoonie 😂 has your urologist done urodynamics? It’ll show whether your bladders emptying properly. Most surgeons try the least invasive route possible first hence why I’d had almost 8yrs of various catheters 🙊 just before surgery I was drinking almost 6l a day to try dull the burning 🔥

@Bubblemonkey no I haven't, i turned up all prepared for it, full bladder done everything according to the letter and leaflet and then they said they were not going to do it! FFS (I was desperate for a wee and rocking back and forth trying to hold all that in waiting!)

I'm managing at the mo with buscopan for that spasm pains and the antibiotics for the burn along with no caffeine booze or dairy + a watering holes worth of water every day. I'm in a much better place than before Christmas when I was on my knees in A&E dying a death pissing out inflamed chunks of bladder tissue. I have MCTD all so I think they are making some association with that but I've had the bladder issue waaaay longer. I honestly think they don't have a clue 🤦🏽‍♀️

Please try a natural supplement called D Mannose. This could really help you. Google it!