Riding / farm work with ureteral stent, experiences pls.

[Pferd_Alter]

Hi
I’m a 40yr old dressage rider and have been diagnosed with a CUPJ (congenital ureteropelvic junction) obstruction via CT urogram and will get a laparoscopic robot surgery to cut away the narrowed part and sutured it back together.

For reasons unclear to me, my urologist first wants me to try a urethral stent of 12 inches from kidney to bladder for 4 to 8 weeks, which he will place himself, before referring me to the laparoscopic surgeon. He says he wants to see if a stent improves my pain symptoms.

But from what I read so far a stent in itself is not necessarily comfortable to have nor painfree.

He told me that as of day 2 past the stent insertion I am allowed to ride and lift 50lbs grains bags, water buckets, hay bales etc.
Which seems contrary to what I have read online so far.

Anyone has any experience with this?
I am thinking if there’s any risk that I may be even more uncomfortable than I already am or not able to ride/lift for the 4 to 8 weeks, then I seriously prefer to jump straight to the main laparoscopic surgery and start my 3 week recovery.
I was told the stent needs to be removed anyway, making things so weird to understand why I would need it in the first place.

My current symptoms are right flank pain, mostly 45 mins after a meal or large drink, as well as when laying down; bloating, fatigue after eating/drinking and a low grade pressure pain up into my lungs and stomach at all times.

Any experiences very welcome!

Thank you!

[allons-y]

The stent is a ’ right now’ available temporary answer to your problem. The surgery is a long term fix, but may take a while to schedule. The stent is usually a kidney-saving ‘bridge’ until you can get on the surgeon’ schedule. Do whichever is avail first, don’t risk your kidney function, you need to think damage control here. The only real answer is the lap. surgery, but anything to preserve kidney function NOW is what you need first. Forget weighing activities after each, it’s not that kind of deal.

Plus the stent will alleviate infection issues and lower your numbers (kidney function) to make anesthesia safer for the surgery. The affected kidney may be in dire danger NOW, or not, I dont see your labs. A Urologist/Nephrologist is dedicated to the health of the kidney, so if He/she rec’s any intervention, you should listen. These MDs deal with renal failure pts - Dialysis and the like, so they know what the risks are.

I sincerely urge you to do what’s right for your kidneys, not even think of one as being an option over the other.

[Pferd_Alter]

Thank you allons-y, I appreciate your concern and I agree with you.
However I was diagnosed with CPUJ-o in 2013 and I requested intervention myself at that time and the urologist said it was not necessary.
In 2015 I went with the same complaints to my primary physician and he said it was muscular pain.
Recently I went back to my primary physician with worsening complaints and I was told it was depression (insert scratch-head symbol & grrrr)
The Urgent Care doctor ordered an ultrasound and then the Urologist ordered a repeat CT scan.
Then he said, well you are one of the rare adults who may require surgery for this, most adults can live with it even though my kidney is seriously enlarged and the ureter is swollen above the narrowing. His reaction to my conditions was a surprise :(.

I said I prefer it to be fixed since I have symptoms, so he explained the laparoscopic surgery to me and said we might as well do the stent first and see if your pains go away, but he didn’t seem in a rush.

Bloodwork, ha, no one is doing any kidney bloodwork on me, they keep looking at my bloodwork of 2015 saying kidney function is fine.

I have however scheduled a 1st appointment with an Neprhologist Aug-1, really looking forward to his opinion on it all.

I live by myself, husband travels, I have no cover here, so if the stent is an issue, then I have a problem. I intend to send my horses to a training board facility after the lap op, but I have no such arrangements ready or possible during the stent period, during which I will be here by myself.

I definitely wish to save my kidney function I already wanted to do so in 2013 & 2015, but no one seemed very concerned or cared much, despite blood in my urine & protein :(.

I know a Nephrologist doesn’t do surgeries, but I hope he can tell me the right way forward in 2 weeks.

Sigh :(.

I’d still love to hear from anyone how they fared riding/working with a stent, thank you

[TownesThatBigChestnu]

I found the stent to be horrific, and was barely able to care for myself the first couple of weeks. I was having blackout pain. The sensation of it inside me grossed me out so much I would vomit when I felt it move. The doctors also gave me the whole.optimistic spiel about how I’d be right back to work, etc. There was no riding (ha!) or carrying of grain bags for me. About a month in, I tried to push a big of grain from my car seat into a wheelbarrow and really hurt myself. I was not able to work (desk job) never mind do anything at the barn.

People told me these same things about the stent before I had it, but I wanted to believe my doctor and that the layup would be short and relatively easy. I wish I had known, as I would have been able to make plans and better arrangements for myself. On day 2 I was not riding, I was crying in pain on the bathroom floor bleeding.

I had my gallbladder out and that was NOTHING compared to this.

[allons-y]

OP good MDs advocate for your health, while simultaneously cautioning against rushing in to possibly unnecessary procedures/surgeries. They all carry SOME risk.

BUT, sometimes we have less than perfects MDs and have to advocate for ourselves.
The Nephrologist is definitely the right step. Hopefully will do labs that day, while you’re at the office. Do not be frustrated if he wants to redo diagnostic scans for his own clear idea of the problem. (Just watch out for contrast if kidney fxn is already impaired, but he knows that)

I only have experience with pts in the immediate post-op period after a stent, and yes, they are miserable. But so is renal failure, so I understand.

I will be thinking of and jingling for you, please update after Nephro appt. Meanwhile, monitor yourself closely and seek attention for any fever, nausea, swelling, etc etc.

[Pferd_Alter]

Thank you TownsThatBigChestnut, this is precisely what I am worried about and I have read numerous such like experiences online so far. It’s not like the odd person out there having really bad pain symptoms from it, but very many. It’s rare when I read about some poster where it went pretty much unnoticed, which appears to be what most urologists want you to believe.
Of course I suspect if people have no symptoms from it, they will not post it online, but nevertheless I’ve read so many stories where the pain from the stent is worse than the condition it’s supposed to help.

Thank you allons-y.
Yes I certainly will post an update. I sure hope I won’t have to have the contrast dye CT-scan repeated.
I don’t like that much radiation in such a short time span.
I am very concerned about keeping kidney function, but I cannot rush into something if it may make me way worse than how I feel at present, because I have no fall back here at such short notice.
Living abroad has its downside, I have no family here who could come over & help out, and my husband travels for the majority of the time.
Of course in a life/death situation, he’d stay home, but I couldn’t expect him to stay with me for the duration of the indwelling stent.
At present, except for the pressure feeling, I am pain free 50% of the time and the other time I have bothersome pain, but I still manage to do the farmwork and ride through it all.

Horses at home & health issues are not always easy :(.

[Miss-O]

When I had my stent put in I wasn’t very coherent and I would have died without it…so I didn’t get much, ‘this is what it will be like if you do get it in’ talk. About 2 weeks after the surgery I was still sore. It hurt enough that I didn’t want to move much. Definitely no riding. They wanted it in for 8 weeks. I was dropping weight like crazy because I was losing muscle mass. I looked terrible. I called the nurse and she told me there was no such thing as being in pain from the stent because there are no pain receptors there ?? She also had no idea why I was losing the weight and suggested I go to my primary doc to have them scan me for cancer. ?? I said this may be but I want it out and for her to get me in for removal ASAP. They got me in pretty fast and the day after the stent was out I felt like a million bucks. I got back into shape in about two weeks and had picked the muscle mass back up(I was in my early 20’s I don’t think that quick of a recovery is possible now lol).

But it doesn’t sound like you have much choice. Get the stent put in to give yourself time to wait for the surgery and then advocate to get the surgery ASAP. I hope everything happens quickly and seamlessly for you and you are on the mend soon.

[TownesThatBigChestnu]

They told.me that about there’s no way it was the stent causing the pain, they said it should be “uncomfortable” at worst. Said I would be resuming my sex life within the week. Week? Try like 4 months! I tried to go back to deak job work half days after a month and fainted at work.

I am currently being told I need the stent again but I am trying my best to tough it out because I CAN NOT willingly do that to myself ever again.