Looking for advice on Ureter Stent

AWK

Hi ladies,

I had a ureter stent inserted on 7/7 to clear a 100% blockage in my left kidney.  I have a follow up appointment on Monday the 20th but thought I'd reach out to see what experience any of you have had with yours.  I feel like I have to go to the bathroom all of the time with this; I am drinking a lot of fluids as advised but am challenged by long commutes to the doctor I am seeing in order to qualify for a clinical trial.  Is this feeling normal?  Does it go away?  And do you have any tips for dealing with it?  This is not the relief I was hoping for:(. 

Hope this finds you all well!  Anne

Kaleena

Ureter Stent

Hi Anne:

Sorry you are experiencing the discomfort that goes along with a ureter stent.   I have had a ureter stent in since August 2014.   When I first had it done and I wasn't even out of the hospital I had to go to the bathroom.  It is the worst feeling.   Did they give you any meds?   They should have given you something for bladder spasms and one for stent discomfort along and a heavy dose pain meds.   Fortunately, I was able to take the over the counter Tylenol and by the time my husband came back with the meds it had calmed down.   I had to lay very still.   The burning sensation I had from the first insertion went away about a week because I was still having blood in my urine.  They had also did a biopsy on me so it took longer to heal.

The other pain or nuisance that comes with a stent is having to have it replaced every three months.   Its not the replacement as much as you need to do these things each and every time:

1.   See your PCP for a physical.

2.  Get a chest X-Ray

3.  Get blood work and urine test

This has to be done before each stent replacement.   So far, I have had a replacement done in November 2014; February 2015; May 2015 and I have one scheduled for September 2 2015 as she was stretching it out.  The replacement surgery wasn't as bad as the initial and I didn't feel the same discomfort as I did originally.

I am sorry you are having so much discomfort, but it is normal.  It is also normal to have blood in your urine.  I had a lot on my February replacement and kept calling them but they said it was ok.  I hope you can find some comfort.

By the way, do you only need it until your blockage clears?   I need mine indefinitely and will have to do this all the time or until such time as I have a ureter reimplantation surgery done (which may be at the end of the year) as my blockage is from HDR brachytherapy scarring near the bladder.

 

Kathy

AWK

Kaleena said:

Ureter Stent

Hi Anne:

Sorry you are experiencing the discomfort that goes along with a ureter stent.   I have had a ureter stent in since August 2014.   When I first had it done and I wasn't even out of the hospital I had to go to the bathroom.  It is the worst feeling.   Did they give you any meds?   They should have given you something for bladder spasms and one for stent discomfort along and a heavy dose pain meds.   Fortunately, I was able to take the over the counter Tylenol and by the time my husband came back with the meds it had calmed down.   I had to lay very still.   The burning sensation I had from the first insertion went away about a week because I was still having blood in my urine.  They had also did a biopsy on me so it took longer to heal.

The other pain or nuisance that comes with a stent is having to have it replaced every three months.   Its not the replacement as much as you need to do these things each and every time:

1.   See your PCP for a physical.

2.  Get a chest X-Ray

3.  Get blood work and urine test

This has to be done before each stent replacement.   So far, I have had a replacement done in November 2014; February 2015; May 2015 and I have one scheduled for September 2 2015 as she was stretching it out.  The replacement surgery wasn't as bad as the initial and I didn't feel the same discomfort as I did originally.

I am sorry you are having so much discomfort, but it is normal.  It is also normal to have blood in your urine.  I had a lot on my February replacement and kept calling them but they said it was ok.  I hope you can find some comfort.

By the way, do you only need it until your blockage clears?   I need mine indefinitely and will have to do this all the time or until such time as I have a ureter reimplantation surgery done (which may be at the end of the year) as my blockage is from HDR brachytherapy scarring near the bladder.

 

Kathy

You are the best and thanks so much!

When mine was inserted it was the third part of a same day surgery that involved removing my gall bladder, a one inch cut for a surgical biopsy of a new met on my liver; then the ureter stent was placed.  God bless the scheduling nurse - she had to line up three different surgeons for that (all were oncologists in their areas of specialty).  My ureter was blocked by a different met and the urological oncologist wasn't sure she'd be successful with the procedure but it worked out.  Mine is considered long term - up to a year and required general anesthesia (even if it had been done on its own).  I left the hospital with only pain medication and I suspect my husband (handled the discharge) may have missed something now that I read yours.  He was pretty overwhelmed - going into the surgery they thought there was a strong possiblility of malignancy in the gall bladder so they thought it might end up being a long surgery with a five day hospital stay but wouldn't know until they got in there.  And recently we have gotten pretty bad news of more mets so as you can imagine - neither of us were on top of our game at the time. 

It feels like spasms to me and a UTI; I'll be okay until I see her Monday.  Your words are so encouraging!  In termsof ongoing visits and tests that makes sense.  I am so tied up with doctors, labs and appointments these days and going forward that it's just a couple more things to keep on top of! 

Thanks again, I appreciate how much you share of your experience and as mine has taken some strange turns you've been a huge help!

Warmly,  Anne

Kaleena

AWK said:

You are the best and thanks so much!

When mine was inserted it was the third part of a same day surgery that involved removing my gall bladder, a one inch cut for a surgical biopsy of a new met on my liver; then the ureter stent was placed.  God bless the scheduling nurse - she had to line up three different surgeons for that (all were oncologists in their areas of specialty).  My ureter was blocked by a different met and the urological oncologist wasn't sure she'd be successful with the procedure but it worked out.  Mine is considered long term - up to a year and required general anesthesia (even if it had been done on its own).  I left the hospital with only pain medication and I suspect my husband (handled the discharge) may have missed something now that I read yours.  He was pretty overwhelmed - going into the surgery they thought there was a strong possiblility of malignancy in the gall bladder so they thought it might end up being a long surgery with a five day hospital stay but wouldn't know until they got in there.  And recently we have gotten pretty bad news of more mets so as you can imagine - neither of us were on top of our game at the time. 

It feels like spasms to me and a UTI; I'll be okay until I see her Monday.  Your words are so encouraging!  In termsof ongoing visits and tests that makes sense.  I am so tied up with doctors, labs and appointments these days and going forward that it's just a couple more things to keep on top of! 

Thanks again, I appreciate how much you share of your experience and as mine has taken some strange turns you've been a huge help!

Warmly,  Anne

You poor dear!
I didn't

You poor dear!

I didn't realize you went through additional surgeries that same day.  No wonder you are feeling the way you are.   Yes.  Everytime I have to have it replaced you have to go under anesthesia thats why you need all the follow up stuff.

I have a soft tissue mass which is now 6 cm and part of it is PET active.  They biopsied one part of it but it wasn't the PET active part and that came back negative.   My ureter goes through the soft tissue mass.   At first my gyne/onc only wanted to watch and see and my urologist (locally) was going to do a reimplantment of the ureter (cut it off by the mass and reinsert the ureter into the bladder at another part.   It is a 3 day hospital stay plus a 6 weeks recovery.

However at my last urologist visit, she was hesitant and was going to wait until my next PET scan.  Then I saw my gyne/onc and he indicated that they reevaluated my case and he wants to be at my surgery so that he can biopsy the mass so we can rule out malignancy instead of this wait and see bit.

I feel crappy but thats not a symptom they are concerned about - lol.    I just found out I have osteosporosis (-3.2) and upped my vitamin D3 to 5000 units a day plus trying to get more exercise in.   It just wipes me out though and I feel like I am in pain.  (I feel pain differently than most).

So tonight I am relaxing with a rum and coke and watching a ballgame.

Hang in there and if you need to talk, PM me.

Kathy