uretic stent for life.......?

[kidneygrl]

If anyone has any suggestions please tell me! I am 34 yrs old and this past January I was admitted to the hospital for a diverticulum in my right ureter just above the bladder. My doctor removed it but then had to repair a leak in the bladder 3 days later. I was given a stent in the ureter to allow it to heal, along with a nephrostomy tube and catheter. I was allowed to go home three weeks later after some complications.
It has now been ten months and I have had the stent in the ureter replace five times. The nephrostomy tube was removed along with the cath back in May.
My docter is telling me that I will have to have a stent for the rest of my life that will have to be changed every 3-6 months! Whenever they try to leave the stent out the ureter becomes obstructed and now there is scar tissue growing on the inside of the ureter. I still have 35% kidney function so I don't want a nephrectomy.
I went for a second opinion and that doctor suggested a ureter reconstruction. Has anyone heard of this or have any experience? I just got married and would like to have children but if I need surgery every three months that would not be possible.

[Cheryl in CT]

Dear Kidneygirl,

First of all, welcome to the KPG board - you've found a great place where you can share info and ask questions of others who are dealing with all sorts of kidney issues. We are not medical professionals, tho, and I think everyone here will agree that your doctor is the one to ask for medical advice. Still, hearing from others about their own experiences can really help, especially when you're trying to put what your doctor says into perspective.

I had to read your post a few times to make sure I understood what you were saying about the stents, because all I could think was whoa - something about that first doctor's determination for the long-run just doesn't sound right to me.... Nephrostomy tube, catheter & stent sound pretty much par for the course after treatment for diverticulitus, but I thought the stent was supposed to be temporary - just to help things while you healed from all the rest of it. At least to me, it doesn't sound as if "everything's okay" if they're talking about your needing a stent forever....

I admit that I have never experienced what you're going thru, but over the 4 years that I've been reading (and reading some more...) about renal issues, I've never heard of a "stent for life" that has to be replaced every 3-6 months! Wow, would that ever be a pain! (Lots of us here have discussed our "fears" about having ONE stent - either renal or urethral - put in and removed - I shudder at the idea of going thru all of that 2-4 times every year.) I would also imagine that just the repeated insertion/removal - and simply having a stent in place all the time - would prove seriously irritating and could even cause internal scarring, perhaps(?) I don't know that for certain, but it certainly sounds unusual to me. I know that in various circumstances (such as lower body paralysis) permanent stents are sometimes necessary, but even those don't need to be changed all the time.

Urethral reconstruction is a rather common procedure and is often done laproscopically (and perhaps endoscopically? - tho I'm not sure about the latter) While only your doctors can tell you if the reconstruction will help in your case, my point here is that it does not necessarily mean regular, open surgery.

Now, I'm assuming that the diverticulitus was the extrinsic cause of the initial urethral obstruction - is that correct? And was your loss of renal function a result of the initial blockage? Is your ureter now kinked, or what is causing the blockages when they try removing the stents? I think there must be something going on there that can be repaired rather than merely treated with all those stents.

If I were in your position, with known kidney damage already, I know that I would be looking for a 3rd and even a 4th opinion right now - I'd want to get this thing fixed before anything else went wrong! Is there a med school anywhere in your area with a really top urologist? If so, I'd be banging on his/her door for an evaluation. Have you seen a nephrologist, as well? With the 35% kidney function, I'd be looking for any way possible to maintain the function that's left and avert any further deterioration.

This all just my opinion, but I really hope that you'll keep looking for a better solution than that first doctor offered - I obviously believe that something more permanent can be done.

I'm wishing you all the best of luck in finding a solution and some more appropriate treatment.

Cheryl
(Connecticut/USA)

[Mike]

Hi,

I can't add anything to what Cheryl said as this is a procedure I've never had nor would I want to let alone every 3 months for the rest of my life. All I can say is get a second opinion! Some of these doctor just recommend whatever is easiest for them with no regard for what the patient has to go through. Just like to see your doctor go through one of these ops and then see whether he'd still recommend a lifetime of this.

Surely there is something else they can do? I really hope so. Just make sure your get a second opinion like Cheryl said and make sure you see a nephrologist as well.

Hope you get this sorted out and welcome to the board.

Mike

[kidneygrl]

Cheryl and Mike,

Thanks for your input. The reason the doctors have given me for needing a continuous stent is that the ureter becomes constricted without one. Whenever they try to leave the stent out the ureter closes up and once again I get hydronephrosis. The repeated hydronephrosis is the reason for the beginnings of RF. I saw a nephrologist and she agreed that the stent solution is no real solution, so she is sending me to a reconstruction specialist out of Jackson Memorial (University of Miami). I don't get to see him until January but at least it's something to look forward to. I don't think I would mind the stent so much if it didn't hurt all the time. I can't drive or stand for more than 5 mins without being in pain and the constant feeling of a full bladder can make a person go crazy. I am already on Cardizem 300mg for hypertension and I'm trying to do everything to keep my b/p low. I know most people out there are worse off than me, I'm just lost and my family doesn't really seem to understand what it's like.

[Mike]

Hi
I hope they can come up with an alternative to the stent when you see the specialist There is always someone worse off than you so don't think that we wouldn't be interested in supporting you through all this because of that. We've all been through very different experiences and I do understand you thinking that as I have felt that way myself but everyone here is very kind and caring.

Please feel free to ask any questions no matter how small they may seem to you, we'll all help you anyway we can.

Good luck with all this, I'm sure your family is as scared as you must be about all this and it may just be their way of coping with it? Your loved ones will go through the same emotions as you will in coming to terms with this. I'm sorry I'm not the best person to give you much advice about that as my family have all got kidney diseases so it is easier for them to understand. I would say though that until my kidneys actually failed I didn't fully understand what it was truly like for my brother who's kidneys had failed over 15 years before.

Love
Mike

[Marion]

Hi,

I had the exact same problem as yourself but in both ureters. You're right in that it drives you insane being both painful and with a constant feeling of full bladder. My stents lasted exactly 3 months each time before obstructing, causing renal failure and having to be replaced. The urology consultant was going to do a bi-lateral ureteric meatotomy and endo-pyelotomy in order to give a permanent solution. All this means is that they split the obstructed ureter to above the obstruction, put a jumbo size stent in, leave it for 6 weeks to heal up over the stent and then remove the stent, leaving a permanently dilated ureter which solves the problem. Unfortunately they left it too long for me and the op is now irrelevant since I have no kidney function left.

So, as the others said, get a second opinion - you should be able to get a permanent solution to your problem. The following url gives a lot of info but yu may need your medical dictionary nearby!!!

http://www.emedicine.com/MED/topic2871.htm

Hope this helps.

Marion.

[Rachel in NY]

Hiya,

Firstly, welcome to the board. Secondly, I second what the others on the board have already said. This sound exceedingly strange. I was in a similar situation myself. I got a zillion UTI's until I got "THE" one that put me into the hospital. At that point they discovered that I've had kinked ureters, blockages, stones, urine backup, and a bad kidney. Strangly enough I didn't have a single clue till then (when I was about 12). I was in acute kidney failure so the Dr.'s though that perhaps if they fix me up, I may get some kidney function back.

NEVER was a permanent stent offered as a SOLUTION. I had surgery to get rid of a large stone, dilation, I had follow up surgeries to fix my ureters - I was given stents each time, but only to hold things open and let everything heal. And to allow stones to pass. NOT, as a permanent solution. Each time they were removed I had further issues. At the end, I had so much buildup of scar tissue/surgery residue that I was blocked yet again. Another stent.

I am getting carried away. But what I've been wanting to stress is that you shouldn't accept the fact that you'll need a stent for life (unless you feel comfortable with it). It may be easier then a fix, but it isn't a fix. Its a bandaid.

Lots of luck to you, and PLEASE go back to yoru dr. and question him/her.

[kidneygrl]

Marion, thanks for that website. I do have a Taber's medical dictionary so I'll be sure to have that by when I read through the site. It's comforting to know someone else went through a similar situation, unfortunately it's not so comforting knowing it ended in RF. I was told we are born with 1 1/2 times the kidney's we actually need, hopefully that will be enough. I just wish I knew my birth parents medical hx. Anyone out there a lawyer? LOL. I've tried three times to get just medical info, not my parents names and each time I've been denied, and this was before the Health Information Protection Act. :roll: :!:

[xmaint]

I have been looking for anyone else with a similar situation to mine. I have stent in my left uriter that is changed out every 4 to 6 months at the University of Virginia. I was born with a screwed up uriter and have lots of neph tubes, stents and surgeries over the last 30 year's. Too much surgery to mess with it anymore. I just wanted to know if anyone else had a similar situation. Brian

[rahul2630]

Hi,

I had the exact same problem as yourself but in both ureters. You're right in that it drives you insane being both painful and with a constant feeling of full bladder. My stents lasted exactly 3 months each time before obstructing, causing renal failure and having to be replaced. The urology consultant was going to do a bi-lateral ureteric meatotomy and endo-pyelotomy in order to give a permanent solution. All this means is that they split the obstructed ureter to above the obstruction, put a jumbo size stent in, leave it for 6 weeks to heal up over the stent and then remove the stent, leaving a permanently dilated ureter which solves the problem. Unfortunately they left it too long for me and the op is now irrelevant since I have no kidney function left.

So, as the others said, get a second opinion - you should be able to get a permanent solution to your problem. The following url gives a lot of info but yu may need your medical dictionary nearby!!!






Marion.

Hope this helps. agree........
......

[Permanent stent]

Hi Kidneygrl


Just wanted to see if you have an update on your permanent stent issue
My dad had also been told that he will need to change his two stents every 6 months which is a permanent reoccurring
Procedure. I am not too convinced that this is the only way and no other alternative options. Having to go
Through this procedure for him plays a big toll on his body every time and as he gets older and weaker
I am not sure his body can tolerate so well . Hoping there is someone that can advise.

The reason for his stents was from previous chemo/radiation treatment which has damaged his passage and without these stents causes obstruction.

[wagolynn]

This may be of interest to you all with stents.

http://www.dailymail.co.uk/health/artic ... -tube.html

[Overnomorestents]

Hello, My name is Kelly. Im 31 years old. I'm lost and really need some help. November 9th,2015(my birthday) I had emergency surgery to remove a massive cyst. A urologist was called in because my ureter on the left side was tangled up with cyst. He used some form of heat to unravel ureter. In the process he burnt holes in it. So he placed a stent. My gyno doctor allowed me to return to work two weeks later, with stent still in. I worked in furniture and lifted heavy things all day. I wound up back in er with server pain from stent. On the Monday following Thanksgiving the urologist allowed the gyno to remove stent in office. He said I was healed and sent me on my way. I wasn't scheduled a CT with dye until December 14th. I kept call doctor because my kidney felt heavy and hurt a lot. Finally on December 6th i started running fever. I was scheduled the following Tuesday to go to Urologist. After urine sample with cath, the Dr ordered a CT. I had a huge pocket of urine in my pelvic cavity because my ureter had been leaking the entire time. I had sepsis and my left kidney had quit filtering out. On Wednesday I was to return to get another stent placed. After procedure I was placed in hospital for 8 days for sepsis. I had 104.5 fever before surgery that morning and hospital staff nor doctor gave any meds. After hospital stay, I went home. Had the stent removed in 6 weeks. Still no luck. In 7 months I had 6 different stents (from November 2015until May 2016). My doctor then said I have a narrowed ureter but small amounts of urine passed thru so he sent me home. He wouldn't release me for work but told me I just had to go on with my life and live with the pain. I was forced to resign from my job. I lost medical insurance. Since early July I've had severe edema in feet,legs, hands,and around my eyes. The doctor won't see me because I owe him money and a lawyer won't take my case to sue because I didn't/haven't lost a kidney. I went to different hospital but only my creatine was low and I didn't go while I was experiencing severe edema so he wouldn't do CT to check ureter because of no insurance. My kidneys hurt every day. I have lower abdominal pain most days. I can't bend over very long due to severe kidney pain on side affected and can't stand very long because of edema even with support stockings. I'm lost and not sure what to do. I don't want to loose my kidney, but after reading a lot of documents I'm certain the typical surgery for ureters won't work because the length of my damaged ureter. Anyone have any hits or tricks? I'm currently unemployed and not insured. I live in the USA, in the state of Mississippi. Please someone help!!

[wagolynn]

Hi Overnomorestents,

You have been having a tough time, from the information you have given I would say you urgently need medical attention.

I do not know anything about the American health care system but I thought there was a fall back system to give help to patients who do not have insurance. If there is, get onto it.

Best wishes.