I've just had a ureteral stent procedure and feel bloody miserable

[AgentFelix]

I'm having my left kidney removed in December due to it being non-functional and having a history of infections. I had a stent procedure on Wednesday to allow the urine to drain out which will make December's surgery easier.

Since the moment I woke up from the surgery I have felt like I need to wee. I go to the toilet, pass a tiny amount, experience agonising bladder spasms, and then feel the urge to wee again. I've had no relief from it at all.

I wish I'd never had the fucking thing thing done.

I haven't had a poo since Tuesday and I've got an ear infection as well

[QOD]

Yup!

[AgentFelix]

Oh Christ that hospital in Cyprus does sound grim. [guffaw] @ the parrot in reception. That's bizarre!

I haven't noticed any clots and the bleeding has stopped now. I found the pink urine quite distressing. Cystitis symptoms are still present but I'm getting used to it.

It will be out in 2 weeks and I'll have post surgery discomfort to whine about instead

[QOD]

Ive had the double J stent procedure twice now, first time was done in Cyprus in a hospital with mouldy ceilings, with a parrot in reception sitting above a mound of crap, and I had not one single problem, not a twinge, nothing at all.

Had it done in 2010 in the UK and had what you have :(. Pain, passing clots, cystitis symptoms, anŷthing and everything. Horrible.

Think its just the bad luck of the draw

Mine were to keep kidney flowing/pee flowing etc whilst waiting for removal of kidney stones

(The Cyprus one was a lovely holiday I can tell ya ... The 2nd one, I flew to Vegas for Xmas 3 days post op. BIG mistake. Awful. Mind you, not many people can claim to have passed a blood clot the size of an egg at The Grand Canyon)

[AgentFelix]

Oh, that's good about the midline. I hated having ABs go through my cannula. It had to be moved to the opposite hand every 2 days because my veins were so irritated. Other patients had a line up near their armpit (possibly a midline) and I wished they'd put one in for me just to give my hands a break. I was only on IV ABs for 5days before I was discharged and put on oral ABs. I'd be gutted if I had to go through that regularly. You're in a really crappy situation Rabbits

I've been googling and I think I've found the answer to why I'll be admitted the day before surgery. They are going to give me a laxative solution [sigh]. I hate having to poo anywhere but my own bathroom. I'm dreading it.

[RabbitsMakeGOLDBaubles]

They do a mid-line if I am having the IV stuff at home. It's a bit less intrusive than a cannula, lasts a lot longer as the course tends to be a week, and the average cannula needs changed every three days. Does tend to mean a day in hospital to get the mid-line fitted, since only about two or three people in the hospital is trained to do them.

But yes, I think now I would rather be in hospital (or at least on my own at home with no responsibilities, than the alternative. Leaves no time for recovery, and most important thing is rest and recuperation after a bug like these, I've had so much post-viral fatigue that I feel like a great big heavy cloud has been over me the past almost three years now.

It could be as simple as the schedule for operations starts early so it's easier to book you in the night before? You would have to call and ask. I hope it goes well.

[AgentFelix]

Sorry to hear that Noddy.

The hospital phoned today to confirm my op will be on 5 December, but I have to be admitted the day before. Anyone know why? Are they going to do something grim like give me laxative suppositories?

Poor you Rabbits . The IV antibiotics are horrible. If I had to have them again I would rather be in hospital where I can rest properly. I can't imagine trying to cope at home with a cannula and drip.

Fingers crossed that you'll start to feel better soon and won't need the IV.

[RabbitsMakeGOLDBaubles]

I started on Salazopyrin, but that's a no. Even though it helped and I am now starting to feel all the aches again that were going with that medication. Have to wait to speak to a Rheumy nurse before I know next course of action, but I'm ill as well having the allergic reaction so it's been tough to chase them up.

My kidney pain is back again and bad, and I've been feeling really lethargic and weak this week, only really able to do very little and then sleeping, plus started feeling nauseous the past two days. Concerned my antibiotic isn't working as that means I will have to have an IV antibiotic, and that means hospital or at the very least respite from the kids as I can't look after them when I am on IV, it makes me ill and sleep constantly.

[noddyholder]

I needed a replacement sadly.

[AgentFelix]

Hope you don't mind me being interested Noddy.

Do you have 2 kidneys now or did you need a replacement for your 1985 transplant?

I agree about kidney pain being excruciating. I haven't had it that often but when it occurs it feels like they are bleeding internally.

[noddyholder]

Sorry kidneys! Had one in 1985 and another in 2000

[AgentFelix]

That sounds very serious Noddy. Do you mean you had 2 kidney transplants or other organs?

[noddyholder]

I have had 2 transplants and my original kidneys and the first transplant are still in and give me trouble from time to time it is excruciating

[AgentFelix]

What DMARDs are you on Rabbits?

DP started off on methotrexate but he couldn't handle the side effects so they changed him to leflunomide. He's recently started getting humira injections as well and they are fantastic. He was so ill 3 years ago that his employer retired him and he started receiving his pension (he was only 36) but humira works so well that he's been able to work again. He's only part time and can only do 2 days in succession but it's still an amazing improvement. A year ago he couldn't walk without crutches.

[RabbitsMakeGOLDBaubles]

My understanding is that they achieve 100% between them. Right now my right kidney takes 24% of that load, so my left kidney is under less pressure to perform. Take that away and I could still have 100% function, but it would all have to come from the left kidney, and of course that could result in kidney disease in the future as it naturally ages, potentially faster because it's doing more and because I am on the DMARD medication.

[AgentFelix]

Oh, you're kind of stuck between a rock and a hard place with that one. 24% is significant especially when you take DMARDS into consideration. Kidney pain is brutal though and I'm sure I would rather risk my future health than deal with it regularly. When I was ill earlier this year I didn't know what to do with myself. The pain was relentless, on a similar level to labour IMO.

The percentages confuse me a bit and my consultant is not particularly approachable so I haven't asked. Should each kidney be functioning at 100% or 50%?

I have a cousin who had emergency surgery years back for an obstructed kidney. He was left with only 10% function but he's never had it removed; it wasn't an option at the time and it's not given him any problems since. I wonder if his risk of serious infection is lower because he's male and so it's safe to keep it in.

Hope you hear about your appt. soon and good luck . I'd be really interested to hear what comes of this second opinion.

[RabbitsMakeGOLDBaubles]

7% is pretty low. They said to me cut off is usually 20%, so I am really quite a lot better off than you at 24% function, especially given that the kidney is also about 50% the usual size with gritty deposits and stones.

No idea when, I had to turn down an appointment that was a cancellation due to childcare and health, so I'm on a waiting list now.

[AgentFelix]

That sounds awful Rabbits.

I didn't know there was a cut off percentage. Although my kidney is referred to as non-functioning it does have some function - 7%. What is the cut off?

I don't really have kidney pain generally. I used to but that was about 20 years ago, probably when it first was obstructed, and when I was ill in the summer. I really feel for you having to put up with that plus arthritis. DP has psoriatic arthritis and I know his pain is on a whole different level to mine. Some of the meds he's been on over the years are very serious too, lowering his immunity. It's a shitty combination - kidney issues and arthritis. I'm really sorry to hear about your situation.

I'm sure if I were you I would want the nephrectomy too. I hope the second opinion gives you new options. Good luck for the appt. When are you going?

[RabbitsMakeGOLDBaubles]

I'm 4% off of surgery level still, and with inflammatory arthritis the medications are broken down through my kidneys, so they want to keep as much function there as possible for that. I've actually been sent for a second opinion with a consultant in Leicester to help decide what to do as my case is so borderline that my own consultant couldn't best advise me. I just want it out because it hurts all the time, and it's the worst kind of pain, but obviously there's more than just pain to consider.

[AgentFelix]

You sound like you're in the same boat as me Rabbits. Is surgery an option for you as well?

I've had an ultrasound, CT scan and nuclear scan and they all confirm a non-functioning left kidney. I could have opted to leave it in but I developed pyelonephritis this summer and my consultant thinks it will reoccur if I don't have the surgery. Hopefully it will put an end to all the UTIs as well as I am sick of taking ABs and I'm sure I have way too much candida in my system as a result.

Thanks for the advice on NSAIDS. GP has advised that I continue with co-dydramol since the hospital know I'm taking it. My urine sample seems clear but he's sent it for testing at the lab just in case. I'm sure it's fine though.

[RabbitsMakeGOLDBaubles]

You need to get a doctor to okay anti-inflammatories like NSAIDs because they are broken down through the kidney and can have an adverse affect also. My other kidney picks up the slack too, so my kidney function overall doesn't show as having problems, but I get a lot of protein in my wee and as I said I get infection after infection, plus the pain.

Have you had any exploratory procedures to look at your kidneys and such yet?

[AgentFelix]

Oh thanks topsi. A bit of sympathy is soothing

I don't know about diclofenac, but I'm sure I read something about ibuprofen. I don't know whether I have kidney 'problems' as such because my right kidney is picking up the slack.

I've been googling but can't find much about my situation. I don't have kidney failure/cancer/stones or anything wrong with me because of my kidney. It makes me worry that all this is a bit unnecessary

[topsi]

oh you poor thing. Anti inflamatory's may help such as diclofenac/ibuprofen, though I seem to remember you can't take diclofenac with kidney problems?

[AgentFelix]

Thanks everyone

I feel a lot better today after forcing down loads of liquids yesterday. I've been avoiding drinking much, which I know is stupid in itself, because weeing is so unpleasant. If I did have the beginnings of a UTI hopefully I've flushed it through, but I will still get a sample tested at the dr's tomorrow.

I think maybe my bladder and wee-hole are just sensitive and tender after being prodded about with. I will see for certain tomorrow though. I really hope it isn't a UTI because a course of ABs will give me thrush and I definitely don't want that at the moment.

I also have psoriasis all over my labia (TMI)

[topsi]

How are you OP?

[noddyholder]

The constipation can cause that pressure feeling and make you feel like you need a constant wee! I have since had the stent out