Worried - Ureter blockage

[Sheebz]

Ureter blockage due to Radiotherapy damage 37 years ago is causing Kidney damage . Stent was unsuccessful and Surgeon now thinking Nephrostomy which is a tube going from your kidney to a bag. Totally debilitating . Has any one had any alternatives for the same problem ?

[accidentalcarnivore]

So sorry for your troubles. My CC was 2007 and fortunately don’t appear to have this issue

[Perido]

Hi Sheena

I can empathise with how it feels to have a less common side effect of cancer treatment. I haven't had the same experience as you but I know of a lady who had her bladder removed as a part of her cancer treatment and she has a bag to collect her urine. I wouldn't know whether that would be similar to a nephrostomy in terms of patient experience. But the lady in question said that of course it wasn't ideal but once she'd got used to it her bag really didn't trouble her too much and she'd come to accept it. She also said she appreciated she never has to be in situations where one's 'dying to go' and there's a long queue for the loo!

Not sure if this helps. Hopefully you'll manage to meet someone who can directly relate to your issue.

For my own unusual outcome, which means I now have to self catheterise, I joined a group on Facebook where I found lots of ladies in my sort of situation.

[Blue_Hawaii]

It very difficult to say yes, I’ve had experience Last week and it’s happening every now and then

I have discomfort in my abdomen, feeling unwell, then I lose mucus discharge, it seemed to ease

I feel my bladder at time doesn’t empty fully

Feeling unwell

The trouble is from waist down, there is a day when you don’t feel pain or discomfort

Xxx

[Julesrich]

Hi Sheebz I had radiotherapy for cervical cancer over 30 years ago which also caused blockage, to my ureter (it kind of shrivelled up I think). By the time it was found it had already caused kidney damage to my left kidney. This was in 2004 and luckily I had duplex kidneys (double ureters both sides). I had an operation to cut away the damaged urters and replace with the duplex tubes and reinsert into bladder. They had tried a stent until my op but this had caused numerous hospital admissions due to blood clots blocking my urethra because my bladder lining had become thin due to radiotherapy damage and the stent caused it to bleed. The op has helped but is still not completely better and I have CKD stage 4. Then in 2014 my right ureter also became blocked and the same operation was carried out on my right side. My doctor has talked about urinary diversion if my eGFR decreases but I am just hoping to keep going as long as possible. My nethrologist doesn't seem concerned and I have 6 monthly blood test and yearly eGFR and ultrasound tests. I am in the UK and we don't seem to have as much support as people in USA as we are NHS care. This may not be something you would be able to have as I think duplex ureters are not that common. On Health Unlocked there is a specific CKD section and it is very helpful with advice etc so you could try that. There is lots of advice around diet and what to avoid with CKD. They always suggest the National Kidney foundation site, which is very useful. Good luck and research as much as you can.

[Sheebz in reply to Julesrich]

Thanks for your reply amazingly the only relevant one . I am desperately trying to find alternatives as I am only being offered Nephrostomy . Can I ask where in the UK did you have your surgery . Do you stick to a special diet ?

[Julesrich]

Can I ask what is your GFR? I live in Kent and had my first surgery at Medway hospital. I was lucky enough to have a brilliant surgeon but unfortunately he left before my second op. My daughter did loads of research and I had a private consultation with a professor in urology and he referred me to the Royal Marsden hospital in London and I had my second op there. I still attend there my yearly eGFR test. As for my diet I do not follow a strict diet but try not eat too much red meat or chicken and I eat white bread and rice. Apart from that I eat most things. So you could look for a good nethrologist and pay for a private consultation.

[Sheebz in reply to Julesrich]

My GFR was 39 prior to removal of ureter stent .It was 46 before stent . Kidney very enlarged but I’m in no pain . Is chicken a no go as I eat loads of it and is it preferable to eat white rice and pasta ? I’ve been researching too and it looks like I need a private Urologist to point me in the right direction . Have been given the name of a Surgeon Guys in London but I’m in Ayrshire in Scotland so looking nearer to home .

[Julesrich in reply to Sheebz]

On the Kidney Foundation website a GFR of 39 is listed as Stage 3b moderate to severe. Which isn't that bad and my nethrologist would not consider any diversion surgery at that level. I was also level 39 at my last blood test. I would definitely arrange a private consultation for a second opinion even if it means travelling a bit. I try to limit chicken to once or twice a week and fairly small portions. And yes white rice and pasta and bread. Good luck with your research

[Sheebz in reply to Julesrich]

Thanks that sounds encouraging . Hope you keep well .

[Julesrich in reply to Sheebz]

Thanks and you. Let me know how you get on

[D_Cymro]

Hi SheebzVery sorry to hear about your problem and the distress it's causing. I needed a nephrostomy after my ureter was damaged in the process of removing cancerous lymph nodes from my pelvis, but it was only in place for a week. My doctors used it as a way of inserting a stent into my damaged ureter through my back, presumably to allow me then to heal, but they couldn't 'find their way' safely through the kidney whilst they used an x-ray to guide them. I had open surgery to insert a stent a few days later and they used a graft from my bladder to repair the damaged section of ureter. My stent was removed 3 months later and I've been ok with it since. A very different situation to what you're facing, I know, but maybe the option of ureter repair is one that could be explored?

With my very best wishes

[Sheebz in reply to D_Cymro]

Thanks for your reply . Very interesting thing to go in through the kidney to repair the ureter . So glad they managed to get you fixed . I’m looking at every option .

[Greeny85]

Hi sheebzI had hydronephrosis in both kidneys caused by radiation damage, they tried stents but I ended up having multiple episodes of sepsis and the kidney function got so bad I ended up having nephrostomys in both kidneys which really improved things and stopped me being so poorly. They took a little time to get used to but were manageable and did not stop me doing anything.

I had further surgery to hopefully repair radiation damage but the strictures I had were too high in my ureters so I now have a permanent urostomy and the nephrostomyd were removed.

Again this took time to adjust but had given me my life back, I have ckd 3 due to the damage from all the infections but thankfully stable currently.

[Sheebz]

Thanks for your reply . Very interesting . What I don’t understand is why the delay for Urostomy when as you say it gave you your life back. Would you mind me asking how old you are and where you come from .