In May 2008, my 6 year old daughter underwent bilateral ureteral reimplantation surgery. The surgeon also removed a ureterocele and tightened the neck of her bladder. As a result she experienced bladder spasms, intermittent severe cramp-like pain which can last for 2 or 3 weeks after ureteral reimplantation surgery, or even longer if kidney stents are put in place after the ureters have been reimplanted. Recovery from ureteral reimplantation surgery complicated with bladder spasms can be a trying time for parents and children. The following is our story. I hope our experience will help other families.
- Living with kidney reflux and a duplicated collecting system
- What I learned from this experience
- Pain relief for bladder spasms
- Ureteral reimplantation surgery: how to prepare and what to expect
- Photo: incision site after ureteral reimplantation surgery
- Ureteral reimplantation in adults: what to expect
- Database of surgeons for ureteral reimplantation surgery
- Support group for kidney reflux and ureteral reimplantation surgery – get help from other families who’ve dealt with kidney reflux and/or ureteral reimplantation surgery
Living with kidney reflux and a duplicated collecting system
Diagnosis of duplicated collecting system and kidney reflux
When my daughter was born, a neonatologist with an interest in urology suggested my daughter had an ultrasound since I have myself a duplicated collecting system and kidney abnormalities are frequently passed from generation to generation, particularly from mother to daughter (the chance of occurrence is 12% in first-degree relatives of persons with this anomaly).
At 7 weeks, my daughter had an ultrasound that revealed she had a duplicated collecting system. More tests were ordered as a result of this initial ultrasound and a couple of weeks later she underwent a MAG3, a renal DMSA scan and a voiding cystourethrography (VCUG).
The diagnoses was confirmed: she had a duplicated collecting system as well as an ureterocele. Vesicoureteral reflux did not show at the time. She remained symptom-free for over a year.
We consulted with an urologist, who did a cystoscopy and another VCUG at age 1, and it was demonstrated she had intermittent kidney reflux grade IV. The urologist recommended to operate even if she had not had a single urinary tract infection (UTI) by then.
We were not convinced about the need for an operation so we consulted with a nephrologist who was happy to wait and see how she went as she grew older. She said that she often saw patients who only discovered they had a duplicated collecting system and associated ureterocele at age 16 or 17.
Conservative treatment: prophylactic antibiotics
In spite of being infection free she was on prophylactic antibiotics (Bactrim) since she was 7 weeks old until she turned 2. She had her first urinary tract infection (UTI) when she was over a year old, a couple of months after she had a cystoscopy.
When she turned 2 we tried to take her off the antibiotics. Then at age 3 and a half or so she started to have constant UTIs. Infections were confined to her bladder and her kidneys were not scarred.
She was put back on prophylactic antibiotics to prevent those infections but as we tried to take her off them again, she would develop a new infection. It became clear daily antibiotics was not a solution for us anymore so after consulting with our nephrologist we decided to operate.
Surgery: partial nephrectomy and bladder reconstruction surgery
My daughter needed 2 operations.
The first one, a partial nephrectomy, was performed in October 2007. After the partial nephrectomy she remained infection free for a few months, even after she stopped having antibiotics.
On advise from the urologist, we decided to go ahead with the second part of the operation. We wanted the best possible long term outcome for our daughter, and that meant bladder reconstruction surgery to:
- re-implant both ureters
- remove a ureterocele, and
- tighten the neck of the bladder, which was likely to have been weakened by the presence of the ureterocele and could in future make her incontinent
The procedure lasted for 3 hours. The wound area remained covered for 6 days. It was a small 6 cm incision. Her skin was also punctured above and below the incision where the catheter and the draining tube had been inserted.
Temporary kidney stents were placed in her ureters at the time of the operation and they would remain in place for 6 weeks. A catheter was also put in place which would remain in for 6 days.
My daughter stayed in hospital for 7 days. The operation was successful but she suffered excruciating bladder spasms for many days afterwards.
On day 7 the catheter was removed. One day later she was discharged from hospital.
Check the Yahoo! support group for ureteral reimplantation for more information on the procedure, to share your experience or ask questions about it.
Postoperative bladder spasms after bilateral ureteral reimplantation
A common side effect of bilateral ureteral reimplantation surgery is severe bladder spasms.
In many cases, bladder spasms are excruciatingly painful and they can last for up to 3 weeks after the operation, some times longer if kidney stents are also inserted.
Bladder spasms can vary in intensity and length, but in some cases, they can pile up for up to one or two hours, particularly at night.
With every bladder spasms episode, my daughter would scream at the top of her voice, cry, get sweaty, agitated, etc.
Bladder spasms would kick in at any time of the day or night, though usually days were better than nights.
When she wasn’t experiencing excruciating bladder spasms she would experience discomfort for long periods of time. The way she would described her discomfort was similar to bladder infection symptoms, burning sensation and stabbing pain in the urethra.
While she had discomfort we were able to distract her, she could concentrate on watching a movie, or talk about something, but when the bladder spasms kicked in she would only yell and scream and you would not be able to take her mind off the pain.
I have not been able to find any statistics on bladder spasms. According to our anesthetist, girls between 6 and 12 are at a higher risk of having bladder spasms. Boys tend not to get them or not that severely.
After doing my own internet research on this topic, I have found that while bladder spasms are mentioned on medical and hospital websites as a very likely side effect of this operation, they are played down, and often there is no explanation about what bladder spasms actually are. I believe medical and hospital websites should explain clearly what bladder spasms consist of, how excruciating pain may be, and perhaps offer some advice on techniques to cope with them.
After a lot of searching, I found this little book Pain, pain, go away: helping children with pain (pdf) could help some families be prepared to deal with pain experienced by their children while in hospital.
I have also collected a list of drugs and strategies to relieve bladder spams used by parents who have left comments on this blog. If you have any tips you would like to share or your child pain relief is effective, please leave a comment on this post or share it with us at the Yahoo! support group for ureteral reimplantation and I will add your advice to the list.
Check the Yahoo! support group for ureteral reimplantation for more information on the procedure, to share your experience or ask questions about it.
Our experience in hospital after bilateral ureteral reimplantation surgery
My daughter came out of the operation looking fine. She had no nausea, and by the end of the day she had recovered her appetite though she was not allowed to eat anything until next day.
We live 300kms away from the hospital so my husband and son returned to work and school in the afternoon of day 2. My daughter was still fine and did not have much pain at the wound site.
By late afternoon on the third day she started experiencing very strong pain randomly. It was not clear to me whether the pain was due to bladder spasms as I had not read anything about bladder spasms before the operation and I did not know what to expect.
By the end of the day it was clear my daughter was experiencing bladder spasms. I decided then I would need some help as I could not go through so many episodes of pain without any support. The nurses also advised to call in for help. So I called my husband and he and my son came back to stay for the duration of my daughter’s hospital stay.
Because of the extent of her operation, for the first 7 days she had a catheter going into her bladder, which according to nurses, makes bladder spasms worse, or more likely.
After 5 or 6 days and nights of bladder spasms, one starts to think that there’s going to be no end to it. You run out of strategies to make your child cope. I started to feel numb with each bladder spasm episode. My daughter became quite depressed as the days continued and bladder spasms did not not get any better.
She did not get used to the pain, she became more sensitive to it. Every needle would now hurt and after 6 days she started to complain about pain on the drip site as well.
Removal of catheter
Removing the catheter can be an interesting experience.
First the catheter is clamped to see if the child can pass urine and empty the bladder to a desirable level -no more than 30mls residual urine was my daughter’s goal. She achieved her goal within 2 to 3 hours.
When the actual tube is removed, urine can come out of the catheter incision for a number of hours. A pad is applied to the incision to collect the urine. My daughter’s pad dried out after one day or so.
After the catheter was removed, strong bladder spasms continued and she would have one every time she passed urine – when the catheter is removed, the urge to pass urine can happen as often as every five minutes.
Bladder spasms continued to be excruciatingly painful for a few days, but over a period of a week and a half after the catheter had been removed, bladder spasms became less painful and at the same time the urge to urinate decreased as the bladder recovered function.
We were discharged from hospital one day after the catheter was removed but the pain level appeared to be the same.
Improvements were so gradual that we couldn’t see much of a difference between one day and the next.
The trip home by car was an ordeal as every bump on the road seemed to trigger bladder spasms as well.
For the first few nights at home my husband and I took turns to spend the night with her.
Bladder spasms and discomfort started to get better on about day 11 or 12 after the operation, ie about 5 days after returning home.
Recovery at home
Two weeks after the operation she went back to school. She could hold onto urine for a bit more than 30 minutes, some times longer and we thought that being in school would take her mind off the the bladder spasms, which she still experienced every time she urinated.
The first week was tiring for her so she only attended school 3 days, but then her bladder spasms started to get gradually better and she was able to go back to school the week after.
While her bladder spasms were not happening constantly after week 4, she continued to have them on and off for about 6 until the kindey stents were removed. The nature of bladder spasms seemed to change and she would experience them as back pain from week 4 onwards.
Full bladder function recovery
Ureteral reimplantation surgery, the use of a catheter for 7 weeks and the insertion of kidney stents affected my daughter’s bladder function.
Stents are routinely used by some surgeons after ureter re-implantation surgery. Unfortunately the use of stents irritates the bladder and not only can they trigger bladder spasms but kidney stents can also cause an overactive bladder, ie bedwetting at night. Again this is something we did not expect or were warned about.
My daughter continued to wet her bed at night for 8 weeks after the operation. While there was no problem with wetting her bed once we knew it was temporary, she felt embarrassed about the wetting and would not tell us.
The wetting dramatically improved after the kidney stents were removed and within 10 days it stopped.
What I learned from this experience
I have made a list of things I learned and others I would have done differently if I had known about bladder spasms.
If you’re reading this because your child is suffering bladder spasms after surgery, feel free to share your experience with the rest of us, ask questions or contribute some tips for coping with bladder spasms on our support group for ureteral reimplantation.
To participate in the group you’ll need to join first but if you would only like to browse you can do so without joining.
Tags: bladder spasms, hydronephrosis, kidney reflux, stents, ureter reimplantation
