Hi there,
I’m new here,
But not new to all of this. It’s a bit of a long story. It 2020 my large bowel burst and I ended up with septic shock. I was critically ill. In a coma for over two and a half weeks, nearly lost my life. Was very lucky not to lose any limbs but I did have my large bowel removed and an ileostomy fitted. I had to spend quite a long time in neuro rehab once I was well enough to then learn to walk, talk eat, move all over again. Since then my abdomen started to fill with lots of different sized cysts one can get to 20cm, they others I’m unaware how big they get. The 20cm abdominal cyst which they class as giant is the reason I ended up with hydronephrosis. I had never had even a UTI at that point and I was 40. It took a locus GP to let me know my Egfr had dropped to 20 which meant nothing to me at that point. And I’m not sure what my creatinine was then. That was back in 2022. I had been losing a lot of weight which I had put down to post septic shock syndrome. And I also lost most of my hair. So I ended up just shaving it all off. It’s grown back again now and I’ve gained weight back. Although that all depends as I was quite big in the summer when the cyst was 20cm and had to be drained again and I was really poorly and had to have an NG tube fitted to rest my small bowel. And at that point at the end of July I found out my right sided hydronephrosis (which is stented) had worded. And the left side stent had slipped slightly. I wasn’t passing urine enough. Even after going to the toilet the nurses did a bladder scan and it was so full still that the scan couldn’t measure anymore.
I’m interested in seeing if there are other people who have to go into hospital and their stents changed regularly. I can’t seem to get my urologist or my gastroenterologist to come up with a solid plan. Or even give me a solid prognosis. My urologist is lovely but I’m a realist. I had my 4th stent change yesterday. They were supposed to be changed every 3-6 months. Now it’s supposed to be 9 months. But it’s actually 11 months. The last time I have some idea of my kidney function is back in July, my get was 43 no idea what my Creatinine was. I know a coupld of years ago it was around 115. So thankfully it did rise from 20.
After being unwell in July I had pain in my kidneys, my urine was very cloudy. Even though I drink a lot of very lightly diluted juice/squash. As an ileostomate we’re advised not to drink lots of water straight as it can flush out all the electrolytes. But I was drinking a lot of Lucozade sport and it was full of sugar so I quit it completely in July.
I did initially have bilateral nephrostomies for a few months at first. Which were a pest. At the moment though I’m just trying to recover from another stent change and wishing I had more solid answers from drs. I also wish I had asked for an up to date blood test for my kidney function given that I had been passing blood before I went in. And I had similar symptoms ie weight loss, lightheaded and fatigue. Also the usual recovery quite a lot of blood in my urine this time and quite a bit of pain in my kidneys when I go to the toilet. My poor partner gets very worried after what happen when I was critically ill. So obviously we keep an eye for any infection after surgery.
Sorry for the long rant. I just wanted to reach out out really. They can’t remove the cysts and the one that they are able to drain just fills back up again. So this all seems like it’s permanent. I know I’m very lucky to be here. And it’s nothing compared to what some people go through. But I almost wish I could prepare for what may lie ahead. The constant stenting (I’m 44 and hoping I have a good few years left yet) and what that is doing to my body, and how they aren’t managing to keep on top of things all the time as the NHS is so crazy. They constantly call me complex as well.
Hopefully the blood in the urine dies down as it’s quite dark in colour and the pain too.
Thanks for reading if you did.