Duplex kidney diagnosis and treatment
My daughter was diagnosed with having a duplex kidney and ureterocele when she was 7 weeks old. She remained symptom free for over a year.
We consulted with an urologist, who recommended to operate even if she was symptom free. Then we consulted with a nephrologist who was happy to wait and see how she went as she grew older. She said that in her career she often saw patients who only discovered they had a duplex kidney when they were 16 or 17.
From 7 weeks to 2 years she was on prophylactic antibiotics. Her first urinary tract infection (UTI) happened 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. 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 was obvious something had to be done.
When my daugther was 6 and a half years old she had bladder reconstruction surgery to remove a ureterocele, tighten the neck of the bladder, which was likely to have been weakend by the presence of the ureterocele, and re-implant her ureters. Temporary stents were placed in her ureters at the time and they would remain in place for 6 weeks.
What we didn’t know at the time was that a common side effect of bladder operations was painful bladder spasms. The surgeon never mentioned this aspect of the operation.
After doing my own research on this topic, what I have found is that even when the spasms are mentioned as a very likely side effect of this operation, they are played down, and often there is no explanation about what spasms are.
Given that in many cases the spasms are excruciatingly painful, I believe medical and hospital websites should put more emphasis on techniques to help parents and children cope during spasms.
In some cases, like my daughter’s, we are not talking about just one cramp now and then, but more like 1 or two hours of constant cramping which made my daughter scream at the top of her voice, get sweaty, agitated, etc. It was as if I was watching myself during contractions while I was giving birth to her. When she wasn’t experiencing excruciating spasms she would experience discomfort for long periods of time. The way she would described them was like when she had had bladder infections and passing urine hurt and burn.
The difference between the spasms and the discomfort was that while she had discomfort we were able to distract her, she could concentrate on watching a movie, or talk about something, but when the spasms kicked in she would only yell and scream and you would not be able to take her mind off the pain.
Spasms were that bad that, in retrospect, even if the surgeon had mentioned them to me, I don’t think I would have believed him.
I found this book Pain, pain, go away: helping children with pain (pdf) could help some families be prepared to deal with sudden sharp pain experienced by their children while in hospital.
According to the anesthetist, girls between 6 and 12 are at a higher risk of having bladder spasms. Boys tend not to get them or not that bad, but then it’s best to be prepared.
Our experience in hospital
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 wasn’t 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. By the end of the day I decided I would need some help as I couldn’t go through so many episodes of pain on my own. 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 it makes spasms worse, or more likely. She had also stents inserted in her ureters.
After the catheter was removed, strong 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.
Spasms continued to be excruciatingly painful for a few days, but over a period of a week and a half they became less painful and at the same time the urge to urinate decreased as the bladder recovered function.
After 5 or 6 days and nights of pain, 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 spasm episode. My daughter became quite depressed as the days continued and the pain did not stop.
She did not get used to the pain, she became more sensitive to it I believe. Every needle would now hurt, she had pain on the drip site as well.
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.
Two weeks after the operation she went back to school. She could hold onto urine for a bit more than 30 minutes, some times more and we thought that being in school would take her mind off the pain. It was tiring for her so she only attended school 3 days on the first week, but then the pain got better and she was able to go back to school the week after and has been recovering ever since.
The stents can also give spams which my daughter experienced as lower back pain. In her case they did not last as long and did not happen very often. Constipation seemed to aggravate them.
Since the removal of the catherer my daughter used nappies for about 3 weeks, mostly at night but in the early days she used nappies day and night.
The removal of stents is an easy procedure, particularly in girls because their urethra is short. In 1 in 50 cases some bacteria may get into the bladder and cause high temperature on the days after the removal of the stents. We were advised to go back into casualty if that happen so that she could be admitted into hospital straight away. Fortunately all went well and the day after the procedure we went back home.
Full bladder function recovery
My daughter has not recovered her bladder function totally. She occasionally runs to the toilet and has had some accidents. It is hard to predict how long it will take but we have been reassured that in time she will go back to normal. It has now been 7 weeks since the operation.
What I learned from this experience
Bladder surgery can be very painful to children and adults
Operations on the bladder can be very painful and nothing can prepare you for that. Be prepared to have random excruciating pain for days after the operation.
When you look the topic up on the internet however you do not find much information about it. Bladder spasms are mentioned as a possible side effect but given spasms can be so painful I think more detailed information should be given about them, particularly from hospital websites where procedures are explained to help carers prepare for certain operations.
Who is more likely to get bladder spasms after surgery?
The hospital nurses I talked to said most children experience spasms to various degrees, though I was never told, even when I asked, that my daughter seemed to get more spasms or they appeared to be more painful than it was the usual.
Our anesthetist said 5% of all children do get them, and in girls between 6 and 12 10% of them do. Those figures are significant and it’s a cause for concern that this sort of pain is not controlled. Pain makes recovery slower. It makes sense to use effective pain management.
There’s no effective pain relief offered, in Australia, to pediatric patients for bladder spasms after surgery
And after researching the topic on the internet there appears to be no effective pain relief in other countries either.
The drugs used to manage bladder spasms were morphine, neurofen and paracetamol, and PainStop after the morphine infusion was stopped. After 5 days in hospital and during a very painful episode my daughter took Buscopan and it appeared to work for 3 days before the catheter was removed. After the removal of the catheter Buscopan didn’t appear to make any difference.
The nurses claimed that the best drug was neurofen but in my experience none of the drugs were really effective. At times she was on morphine, paracetamol and neurofen and she’d scream in pain like she was giving birth. Then the pain would go away and if she was luky she may have a good afternoon with no pain at all.
The surgeon’s response to pain management was to “tough it out”.
Go to hospital with a team of two support people to be with your child in shifts and leave your other children with family or friends at home
The whole text can be found at my website on this issue at http://ureteralreimplant.wordpress.com/ I hope this helps people going through or preparing to go through a similar experience. When I was looking for a personal experience on this topic I couldn’t find one so I decided to write my own.