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Old 03-22-2012, 02:22 PM   #1
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UPJ Obstruction, Recovering from Retrograde Endopyelotomy/Pyeloplasty

I wrote back in 2010 about ongoing kidney pain with no stone or infection (although I've had plenty of both of those).

http://www.healthboards.com/boards/kidney-disorders/823307-left-kidney-pain-no-kidney-stone-er-wont-help.html

I finally found a surgeon who diagnosed me with a possible Ureteropelvic junction (UPJ) obstruction. I had a test done where they check to see if your kidney is draining properly and mine was not. He scheduled surgery for last Friday 16 March 2012. He said he was going to go up my urethra with a camera to my kidney and see if there was an obstruction. Then place a large stent in to try to stretch my ureter. If that didn't help, he would do another surgery the following Wednesday in which he slices all along the side of the ureter then places a larger stent in and tries to get the ureter to grow back around the stent larger than before, so the kidney would drain properly.

I went in on Friday for the initial look and place a large stent in, and woke up in absolute agony. I was told the surgeon went ahead and did the actual surgery. I was initially told he found a one inch section of my ureter that was totally narrowed and removed, the ureter was reconnected, and then he sliced the length of my ureter and placed the very large stent in to get it to grow back around it and be large enough to drain my kidney properly. However, I'm not sure if that's what he did or not, because when I saw him later, all he mentioned was that there was some narrowing.

Either way, I went home after the surgery, even though I felt like I should be in the hospital because of how much pain I was in. But they wouldn't let me see me husband until I said I was well enough to go to the recovery room, and I wasn't thinking clearly (I just wanted him there to comfort me).

On Saturday, the dilaudid they'd sent me home with wasn't helping, and I was in agony. I ended up back in the hospital, where even though I kept telling them I'd just had surgery, they yelled at me that I didn't have a stone or infection and treated me as though I were 'drug seeking', but eventually (when I became hysterical and tried to get dressed, saying I wanted to go home or go to another hospital), they checked me in. The whole time I was there I was miserable. They put me in a wing all by myself (I've since been told by friends who are nurses that they do that to the patients they think are naughty - so then every person dealing with you expects you to be horrid.) They had me on the pump (where you push the button every few minutes to get pain meds - dilaudid, in this case). The staff treated me like all I wanted was drugs, and I had a horrible experience. I cried a lot, and wanted out of there.

I eventually convinced my surgeon to send me home - he said he'd have the hospital doc prescribe me dilaudid and toradol. The hospital doctor argued with my husband and I about the meds, but finally capitulated and gave me a couple days worth of pain meds (but then failed to put her DEA number on the prescription, rendering it useless - my husband had to go back to the hospital after taking me home, and then going to the pharmacy, where they told him they couldn't fill it, to get the doctor to fix the prescriptions).

After I left the hospital, I went home to sleep while my husband got my meds taken care of. When I woke up I had a message from the clinic of my primary care doctor. They sounded very upset, and said that 'They got my message requesting morphine, dilaudid and toradol, and I would need to give any med requests to the surgeon, not them - they would not be filling any pain medications for me. and that they'd left a message with the on-call doctor at my surgeon's office about this request for narcotics.'

I was really confused - I'd not called them asking for medications. I called them back and found out that it was the hospital doctor who had called them and told them I would like them to give me prescriptions for morphine, diluadid and toradol. I told them I never asked for that, and that I left the hospital with prescriptions for dilaudid and toradol, per my surgeons request - then I told them about the doctor arguing with us about the meds, and that I would be filing a complaint about all of that. The clinic was sympathetic, but I feel like now they think I am just some drug-seeker, and even if I legitimately needed pain meds, they wouldn't prescribe them for me.

I called and spoke to my surgeon the next day and he seemed to understand, and said I should call the hospital and file a complaint, and that it sounded like the hospital doctor couldn't take (his) instructions. He said he was glad he'd heard my side of the story and cleared things up, but then made a point of saying I should be weaning off the pain meds, even though I told him if I don't take it every four hours as prescribed, I'm bent over in pain, crying.


I'll run out of meds tomorrow, and I have been following the instructions on the pain meds - not taking more than I should. My husband keeps track for me, so I know I haven't messed it up somehow.

My surgeon said I should be weaning off the meds, and acts like I should not be in this much pain, so I know he won't be giving me any more pain meds. But I am in agony, and I don't know what to do.

It feels like someone punched me in the kidney - I am having horrible pain in my back where my kidney is - and like someone took a knife and cut my ureter, and for good measure stabbed my bladder (I'm having really bad bladder spasms). It hurts to pee, and sometimes I have to sit there and force myself to go, other times I can't go at all - probably because I know how much it is going to hurt.

I'm having diarrhea, too. Everything I eat just comes back out within an hour or so. I feel nauseous non-stop, but am taking promethezine, so I don't actually vomit, just feel like I should. Every now and then I get a low-grade fever, but it isn't consistent. I also break out in a cold sweat and my blood pressure is really high from the pain.

Has anyone out there had this surgery done? If so, was the recovery this awful? It seems like no one will believe that I am hurting, and that makes me feel worse. I don't know what I am going to do when the pain meds are gone. After my last experience going back to the hospital, I don't want to repeat that.

 
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Old 04-22-2012, 09:08 PM   #2
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JKidney HB User
Re: UPJ Obstruction, Recovering from Retrograde Endopyelotomy/Pyeloplasty

Nowatwitsend,

Sorry to hear about your troubles but I hope it comforts you to know you're not alone! Almost the same exact thing was happening to me last year! I am hoping it has gotten better by now though.

I actually made an account just to write you back about this matter. I am going to tell you now that you need a second opinion. It sounds to me like you had a regular stent put in (which is very painful if you have a blockage in your ureter and have for most of your life which I did). It's a normal procedure which causes you to be in and out of the hospital.

I'll just tell you a bit about what happened to me! I had back pain for most of my life and eventually found out I had a blockage in my ureter causing my right kidney to pretty much be useless. My doctor told me the same thing, they'll try to the stent to see if it opens it up more to let the urine flow through then I'll get another renal scan to see if my kidney function has improved. Well anyways, I got the stent put in and I was having a lot of pain like you wrote. HORRIBLE pain. The first day I was at home I couldn't move and I was in constant pain. So I went to the doctor and he was reluctant to give me meds but he eventually did and it helped so much. But they didn't give me very much and I eventually ran out and ended up in the emergency room asking for more pain meds. They did the same thing to me, acting like I was a drug addict or something but eventually gave me more. At this time my family wanted me back with them in Europe so I flew over and started seeing a kidney specialist here. The plane ride was hell but it was so worth it. My new kidney doctor told me I needed to go to the hospital immediately because he said my other doctor in the states either didn't put the stent in correctly or it had moved. By this time I was always in pain. Sometimes I would feel okay but then minutes later I would be hunched over in pain and nauseous. And it had gotten to the point where I had to wear adult diapers because my bladder spasms were so bad that I couldn't control my bladder.
Anyways I took my new kidney doctor's advice and went to see the urologist at the hospital. They checked me in immediately gave me pain medication and set me up in the next day to get a replacement stent. I got it and I was scared honestly because I knew after the procedure I'd be in pain. But to my delight I felt 100% better! They even kept me in the hospital for a week to monitor me and see if I have an infection.

After I was released a few months later I came back to the hospital and had another renal scan, they decided my kidney function would never improve but it was at somewhat of a stable function to go ahead with the pyleoplasty surgery.

This might not be the case for you but I figured it couldn't hurt to write you back about it and tell you it's definitely NOT normal to have that much pain with a simple stent put in and you should maybe see another doctor or surgeon maybe someone who's specialty is in this area! It is so dangerous if you keep getting infections in that area and could cause you to get infections in your other organs.

If you're curious about anything else you can write me back on here and I'd love to answer any of your questions! I really hope this helped and I hope you're feeling better and on your way back to being 100% healthy again!

 
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Old 08-18-2012, 03:24 PM   #3
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Red face Re: UPJ Obstruction, Recovering from Retrograde Endopyelotomy/Pyeloplasty

Hi, I had Ureteropelvic Junction Obstruction— Laparoscopic Pyeloplasty 7/12/12 and sounds like my procedure was different than yours. Had to go back to surgeon 7/18/12 because stent clogged and a nephrostomy tube was needed. I am mostly out of pain now 8/18/12 and sounds like something is very wrong with yours. I would seek another opinion. Good luck. And as far as the meds and no one believing you about the pain, no one believed me either until I saw Dr. Caddedu. Apparently this particular problem is not something most urologists are familiar with and this combined with fact complaining of kidney stones / kidney pain is common drug seeking behavior your doctors probably just didn't understand.

 
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Old 01-11-2014, 09:10 PM   #4
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Re: UPJ Obstruction, Recovering from Retrograde Endopyelotomy/Pyeloplasty

Hi there,
My husband is going in for a pyeloplasty soon. I was wondering if you could shed some insight on your recovery? Did you have a stent put in ? What were your pain levels like? We are meeting with the surgeon next week, however, I feel like talking with people who have actually been through this may be of better help!
Thanks so much!

 
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Old 03-10-2014, 04:09 AM   #5
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Re: UPJ Obstruction, Recovering from Retrograde Endopyelotomy/Pyeloplasty

Hello luvstoshop,
I had open pyeloplasty surgery about 10 weeks ago. I had a stent put in place, which will be removed this week. The day I was released from hospital I was in agony and ended up going back into hospital for a further 5 days. This was due to infection and just unlucky for me. Aside from that, the pain levels haven't been too bad, just general discomfort. If you google 'Double J Stent Metro urology' and read the pdf, that is a pretty good description of what it feels like. I have been able to resume normal activity, with the exception being any strenuous exercise. Hope this information helps

Last edited by Bongo17; 03-10-2014 at 04:12 AM.

 
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Old 05-28-2014, 10:45 AM   #6
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nikkisuetom HB User
Re: UPJ Obstruction, Recovering from Retrograde Endopyelotomy/Pyeloplasty

Hello everyone. I've been diagnosed with UPJ Junction Obstruction and am scheduled for a renal scan and ct next week. Thank you for sharing your experiences with the process of dealing with this diagnosis. It has helped me find the information I'm looking for. I'm wondering if anyone has had the robot assisted pyeloplasty procedure? My urologist mentioned this as opposed to the laproscopic pyelopalsty.

 
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Old 07-21-2014, 08:57 AM   #7
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kwapex HB User
Re: UPJ Obstruction, Recovering from Retrograde Endopyelotomy/Pyeloplasty

Hi,

I am trying to decide between Retrograde Endopyelotomy or pyeloplasty. What is the recovery like for these? I am Stay at home mom to a 9 month old and need to consider that with my decision. Thanks.

 
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