I am here!
Way, way overdue an update, sorry about that!
Anyway I'm home and *touch wood* all cured and fixed and things are going well. I say touch wood because there have been all manner of hiccups and teething problems with this ole robobladder but I'm gradually getting it sussed and it's pretty brilliant, actually.
I was in Christies over two months in the end. Kept having false starts, coming home and going back in with infections and bladder training issues and God knows what. My new bladder is made from my appendix and colon and started out quite small and unstretchy(word?), so I've had to 'train' it by filling it up and emptying it hourly, then two-hourly etc, around the clock. It was... inconvenient, shall we say. Knackering might be a better word, in the early days. But it needed doing, and I'm drinking and weeing at pretty normal intervals now so I guess it worked.
I came a cropper a few times, though, mainly when I hit the booze. The first time, I hadn't accounted for the diuretic properties of alcohol. I wasn't leathered or anything, but after a couple of drinks I couldn't go at all. And when the bladder overfills, it gets blocked and I go into retention, where the urine starts backing up to my kidneys and o.m.g. the pain. Indescribable. So that night ended in me being rushed to A&E in an ambulance, shivering and puking in agony and eventually having a needle plunged through my tummy to suck the wee out. That was pretty glamorous.
The next time (because obviously I was never going to even contemplate not drinking alcohol again), I was super careful, and super vigilant, and still it happened again. And then it happened when I hadn't drunk any alcohol at all, and all these nights at A&E battling with North Staffs shitty doctors (just do the freaking procedure! Here's a letter from Christies outlining it all!) were really getting me down. But I had my three month check-up with my surgeon and he couldn't have been more pleased with me. The retention thing is perfectly normal because the bladder's still not at full capacity, and he assured me that it would happen less and less as time goes on. TOUCH WOOD (I was never this superstitious before), it hasn't happened for a while now so it looks like he was right. Touch wood.
The other weekend I was invited to Harrogate for a big conference thing for people who have had the same op. It was fascinating. I learnt more in that weekend than I did in months from the hospital. For example! I can never do a wee on the stick pregnancy test because the chances are I'll always get a false positive result. So glad I found that out! It's because the colon part of my new bladder produces enzymes or something that makes my wee look pregnant. I don't know. Even the men who have had my op would get positive pregnancy test results, which is pretty funny. But also, I can never do a wee test for drugs or UTIs, etc. And GPs don't always understand, because it's so rare, and try to bombard us with antibiotics that we don't need so we have to really be masters of our own health from now on.
This Saturday I've been asked to speak at a urology conference thing in Shrewsbury. There's not many of us in the country and everyone's fascinated. I'm a bit nervous tbh but totally up for doing it and spreading the word because this operation is actually brilliant. Of all the people I met in Harrogate, so many had been through the same shit as me, had to fight for the op and against having the bag, and if it helps people make the decision then it's all good. I wish I'd met someone like me six months ago anyway.
In other news I've got a new boyfriend! He's very, very attractive but a bit dim and a bit of a bighead. He's like a trophy boyfriend. Fun!
Tell me some gossip!
Anyway I'm home and *touch wood* all cured and fixed and things are going well. I say touch wood because there have been all manner of hiccups and teething problems with this ole robobladder but I'm gradually getting it sussed and it's pretty brilliant, actually.
I was in Christies over two months in the end. Kept having false starts, coming home and going back in with infections and bladder training issues and God knows what. My new bladder is made from my appendix and colon and started out quite small and unstretchy(word?), so I've had to 'train' it by filling it up and emptying it hourly, then two-hourly etc, around the clock. It was... inconvenient, shall we say. Knackering might be a better word, in the early days. But it needed doing, and I'm drinking and weeing at pretty normal intervals now so I guess it worked.
I came a cropper a few times, though, mainly when I hit the booze. The first time, I hadn't accounted for the diuretic properties of alcohol. I wasn't leathered or anything, but after a couple of drinks I couldn't go at all. And when the bladder overfills, it gets blocked and I go into retention, where the urine starts backing up to my kidneys and o.m.g. the pain. Indescribable. So that night ended in me being rushed to A&E in an ambulance, shivering and puking in agony and eventually having a needle plunged through my tummy to suck the wee out. That was pretty glamorous.
The next time (because obviously I was never going to even contemplate not drinking alcohol again), I was super careful, and super vigilant, and still it happened again. And then it happened when I hadn't drunk any alcohol at all, and all these nights at A&E battling with North Staffs shitty doctors (just do the freaking procedure! Here's a letter from Christies outlining it all!) were really getting me down. But I had my three month check-up with my surgeon and he couldn't have been more pleased with me. The retention thing is perfectly normal because the bladder's still not at full capacity, and he assured me that it would happen less and less as time goes on. TOUCH WOOD (I was never this superstitious before), it hasn't happened for a while now so it looks like he was right. Touch wood.
The other weekend I was invited to Harrogate for a big conference thing for people who have had the same op. It was fascinating. I learnt more in that weekend than I did in months from the hospital. For example! I can never do a wee on the stick pregnancy test because the chances are I'll always get a false positive result. So glad I found that out! It's because the colon part of my new bladder produces enzymes or something that makes my wee look pregnant. I don't know. Even the men who have had my op would get positive pregnancy test results, which is pretty funny. But also, I can never do a wee test for drugs or UTIs, etc. And GPs don't always understand, because it's so rare, and try to bombard us with antibiotics that we don't need so we have to really be masters of our own health from now on.
This Saturday I've been asked to speak at a urology conference thing in Shrewsbury. There's not many of us in the country and everyone's fascinated. I'm a bit nervous tbh but totally up for doing it and spreading the word because this operation is actually brilliant. Of all the people I met in Harrogate, so many had been through the same shit as me, had to fight for the op and against having the bag, and if it helps people make the decision then it's all good. I wish I'd met someone like me six months ago anyway.
In other news I've got a new boyfriend! He's very, very attractive but a bit dim and a bit of a bighead. He's like a trophy boyfriend. Fun!
Tell me some gossip!