Kidney stent
Posted , 11 users are following.
Hi everyone.
Just looking for some general advice and people to chat to in the same situation as myself.
5 weeks ago I was admitted to hospotsl via A and E with severe hydronphroses, and was diagnosed with a large 10mm stone in my right kidney. Stone was lodged in the tube between my right kidney and my bladder stopping the flow of urine.
I was taken to theatre and had a stent inserted but the stone was kept in.
I have had the worse 5 weeks of my life, I've had to move back with my parents to help me care for my child, I've been unable to walk or move without being in agony.
On Sunday I took myself back to A and E as I couldn't cope and have now been told I will have an operation tomorrow to hopefully remove the stone and stent but they may have to keep the stent in. I've been told if the stent stays in it will be removed under local anaesthetic in a few weeks time. Does anyone have any experience of the stent staying in once a stone is removed? Is the pain the same? And how painful is it to have the stent removed?
Any advice would be greatly appreciated. Thank you
0 likes, 24 replies
Luna_Sea laura78292
Posted
Why has there been such a long delay in having the stone removed? This sounds like a big, unnecessary mess. For one thing, if they went to the trouble of placing the stent, they should have done a uretorscopy on you and removed most of the stone as they chipped away at it with a laser. After that, they could have left the stent in for about a week or so, giving your ureter time to recover from the trauma of the uretorscopy. After about a week or two, the stent would be removed and you would flush out the remaining debris. That is what should have happened. I'm sorry that it didn't happen for you and once this process is complete, find yourself a new urologist. Or you could even find a new one now if this is to be dragged out much longer. Depending on what procedure they are about to perform, uretorscopy can be traumatic for the ureter and cause it to become inflamed. Because of this, they usually place a stent afterward to keep the ureter open. In the case of lithotripsy, my urologist doesn't place stents. They shock wave the stone into pieces and your ureter isn't traumatized, so you should be able to pass the broken pieces afterwards with lots of fluid and pain meds. On another note, I don't know what medication they gave you for the stent pain, but the combination of drugs given to me has always been enough to make life tolerable. You should have something like Urabel (changes your urine to a blue color), Flomax (dilates the ureter for easier passage of stones) and some kind of anti-spasmodic (I've used oxybutynin and another kind I can't recall the name of). The combination of these and hydrocodone almost bring me back to normal function. If you weren't given these meds, you should insist on them because you are suffering unnecessarily. The stent has always been the worst part for me and you will still have discomfort after the stone is removed if you aren't on those kinds of meds. The removal of the stent wasn't that bad. My doctor inserted a camera with a grabby thing that hooked into it and he pulled it out quickly. In seconds it was over and the relief immediate. The time before (with a urologist I did not like and ended up changing) it was removed under unnecessary sedation. I wish you luck and hope this is resolved soon for you!
laura78292 Luna_Sea
Posted
Thank you for your reply.
The stent was placed due to severe hydronphroses and I have no idea why they didn't remove some of the stone at the same time, I was informed it was to risky due to the infection in my kidney.
As for it being left so long, I was initially told 3 weeks to allow kidney to recover and was then placed on a waiting list! Being the NHS the waiting list was ridiculously long and I ended up with an appointment in February!
Luckily it all out now but I do have a further 2 stones which I've only just been informed of so these will need treatment at a later date.
Luna_Sea laura78292
Posted
You are in Britain? While most of the heathcare issues here are appalling as far as expense goes, things do move very fast with private insurance in the U.S. I'm sorry they put you through such a long, miserable wait. My urologist found my kidney stone on a Thursday and was removing it the following Tuesday. Monday, he was pulling out my stent. With how slow things progress there, if you can get a lithotripsy, insist on no stent. If they want to do a uretorscopy, request they give you a stent with a string that you can remove yourself just in case you end up waiting at their convenience, which is not fair to a suffering patient. I'm glad you are feeling relief. If you still have back pain (which can happen...I'm sensitive to stones sitting in my left kidney) get pain meds until they can treat it. But I think the worst of it is done for you with the stent gone. Even with the strongest narcotics, I could still feel the stent until the blue numbing pills kicked in and the fact that you aren't feeling it is a good sign. Might be a few spasms here and there, but the worst is over. So happy for you! The first time going through this is a learning experience...the second time you will know what demands to make (especially regarding the miserable stent...I cried before my last stent placement because I remembered how much it hurt to wake up from sedation with that thing inside...but I was so much better prepared with the drugs needed to keep it from torturing me because of my first experience).
Earlybird laura78292
Posted
laura78292 Earlybird
Posted
Hi Shirley.
Your cancelled appointments are similar to my situation. My stent was inserted on 24/10/17 and I had a date of 15/11/17 to remove which was cancelled I was then re-issued a date in February!!!
My only advice would be to get yourself down to A and E with chronic pain and see if they can remove it sooner. It's so unfair to be left like this this. The one medication that did help the pain was 100mg diclofenac suppositories but can only use it once a day and lasts about 5 hours.
I'm currently sitting in my hospital bed waiting to be called for my op so I shall keep you updated. Fingers crossed for me that the stone and stent are removed in one go.
Laura
Earlybird laura78292
Posted
laura78292 Earlybird
Posted
Stone and stent removed!!!
I can't begin to describe the relief!
I have some back ache and feel really bloated but Its 1000 x better than the pain from the stent.
I only got out of theatre at 4 so pain could still be masked by pain relief but I've managed to walk to the toilet and I'm allowed home in a few hours.
Only negative was they found one more stone inside my right kidney and one more inside my left.
Right side they think will probably just drop out of kidney and I would be able to pass it normally. Left side needs treatment and they will discussed it with me in 3 months time if I don't end up back in with problems before that! They will either use shockwave lithotripsy or another ureteroscopy, but I will beg not to have another stent.
I am really hoping I can get on with my life now and I'm actually excited about getting back to work!
I really hope you get your stent out soon, I know exactly what you are going through and I know nothing I say will make it any better. But don't worry about the procedure as it is no where nearly as painful as that awful stent!!
Xx
Earlybird laura78292
Posted
Barb1705 laura78292
Posted
After reading your letter, I guess I should consider myself lucky. I've had a stent in since the 23rd of Oct. Had a procedure that day to remove the 9mm stone, but it was impacted in the distal part of the Ureter (the tube between the kidney & the bladder), and the doctor could not get it out, It wouldn't even break up when he used a Laser. My kidney was also swollen, because the stone was blocking the urine. Doctor put a stent in to allow urine to flow, and said I would have it in for 2 weeks, but then he was all booked up, so I've had the stent in for 7 weeks. Going to have another procedure this week to hopefully get the stone and stent out. But was told will have another stent put in, even if he gets the stone out, because he will be using a Laser again, and that makes the Ureter swell, so the stent will be put in to keep the Ureter open, and allow urine to flow. Only problem I've had with the stent is that it makes me feel like I have to urinate frequently. Did have BAD pain at times for the first 3 days right after the first procedure, but no pain since. Sorry to hear you are in so much pain. Have you tried using a heating pad. That's what I did those first 3 days, and it really helped.
laura78292 Barb1705
Posted
Hi
Thank you for your reply. I used a hot water bottle which helped if I could sit or lie down but no heat or medication helped when trying to move. Luckily I am now stent free and only had to put up with it for 5 weeks but it was honestly the worst pain I have experienced and I had a baby last year! I have another stone in my left kidney which needs removing and the waiting time just for my consultants appointment is 3 months but it's not causing any problems at the moment.
Your experience sounds horrible and I really hope it is all sorted for you soon. Who would of thought some that tiny little stones could cause so much pain.
Barb1705 laura78292
Posted
Hi Laura, I'm really glad that you are stent free. I think you said they removed it while you were awake. Is that correct? If you were awake, did it hurt? I am not good with pain, and I found out today when I went to the doctor's office that he was definitely taking the stent out this week, when he goes in to get the stone out, and that he's going to put another stent in, and the new stent will only be in for a couple of days, so that means he'll be taking the new stent out in his office while I'm awake. I start shaking just thinking about that.
Hopefully the stone in your left kidney won't give you any trouble.
laura78292 Barb1705
Posted
I was asleep when they removed the stone and then the stent.
I was told that if the stent needed to stay in ( which I begged for it not to) that it would then be removed whilst I was awake. My consultant told me it is " eye watering" for about a minute and then it's over with and they use a numbing gel so all you can feel is a bit of tugging. From what I've researched online it seems normal practice to have a stent removed whilst still awake so hopefully it won't be to painful! Just keep thinking about how nice it will feel to not need to go to the toilet every few minutes :-) x
sarah87162 laura78292
Posted
Had a few problems when they tried to clamp the stent off to see if I could work without it and they had to re open it a couple of times. Stent finally came out after a week. No local anaesthetic for this. It hurt a bit when they took it out but nothing to really worry about. They put a dressing on and said I could take it off and get the area wet in a couple of days time which I have done. It is a bit sore but otherwise dry and looking OK.
Hope this helps.
take care and keep in touch
Sarah
laura78292 sarah87162
Posted
Thank you for your reply Sarah.
Can I ask whether your stent was on the outside from back of kidney or inside? The type I had was on the inside from my kidney to my bladder. If I have to have one again I might ask to have one on the outside draining from my kidney into a catheter bag. I'm unsure whether you can go home with this though or have to stay in hospital until it's removed.
Laura
indie6021 laura78292
Posted
Luna_Sea indie6021
Posted
You must not be in the U.S. I'm horrified for you by this situation. Can you not just show up at the emergency room and tell them you are there to get it removed because you can't take pain meds and are suffering? To me, this is an emergency. I mean, it's bad enough with pain medicine. Without it, I would tell them you are on the cusp of finding a way to pull it out yourself (don't do that by the way...just trying to paint a colorful picture for them to imagine). I don't know if they are trying to schedule you a sedated removal of the stent (that is how my first one was removed), but they can very quickly pull it out in the office with a cystoscope. Getting my second stent removed literally took less than five minutes and three of those minutes were spent with the nurses prepping me for it. The doctor stepped in, stuck the cystoscope up, located the loop with the camera, grasped it with a claw and pulled it out. Done. He left the room and the nurses cleaned me up. The removal was uncomfortable for a few seconds, but I immediately felt so much better with it out. I'm not sure why they can't find two minutes to tug it out for you. Surely your emergency room has a cystoscope and someone can get it out for you? I don't really understand how healthcare works in other countries. I just know here, I would spend hours at the ER until someone found a second to fulfill my urgent need to get the thing out of me.
laura78292 indie6021
Posted
If you are in the UK I suggest to keep attending your local A and E to tell them how much pain you are In. This is the only way my stent got removed. Like you I was on the “urgent” list which was over a 3 month wait. By attending A and E 3 times in one week for pain management they decided to remove my stent. I too had to move to my parents with my young son as I could not care for him myself.
Unfortunately I’m still having numerous infections due to another two stones but at least I am stent free at the moment.
I hope you get it sorted soon.
Laura