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When my daugther was 6 and a half years old she had bladder reconstruction surgery to remove an ureterocele, tighten the neck of the bladder and reimplant her ureters.
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. Whether it was intentional or not we will never know.
Fifteen minutes before the operation the anesthetist made it clear that our daughter was at high risk of having bladder spasms (girls between 6 and 12 are at particular risk) and, in spite of the morphine, the paracetamol and the neurofen, she may still experience discomfort and even pain and nothing can be done about it.
This took us by surprise so after the operation we started watching for spasms.
The day of operation and the day after she was recovering very well, had no nausea, she recovered her appetite and had no spasms. But by late afternoon on the third day she started experiencing very strong pain randomly.
From then on she had spasms now and then, some times episodes would last for one or two hours, particularly at night.
She would scream, get sweaty, and be all nerves, stretching, crying, etc. Spasms usually would go away as suddenly as they would come in.
Sometimes, she would experience discomfort for long periods of time.
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.
For the first 7 days she had a catheter going into her bladder, which according to nurses it makes spasms worse, or more likely.
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 full function.
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.
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.
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 she 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
You can't go through this alone. Our plan was for me to be with my daughter during the whole stay in hospital. After all she had a partial nephrectomy a few months earlier and I stayed the whole time in hospital with her with no issues.
This time it was different. You can't watch your child go through so much pain and not being able to do anything about it for a long time, with no sleep and no support other than the nurses. The nurses were great but they had to care for other patients as well.
Ask a ask questions and always ask about pain management
We didn't. If we had known, we could have prepared ourselves mentally for what was coming.
Bring your child's favourite movies, games, toys, etc to hospital
Our hospital had child therapists, video games, DVDs, etc. If your hospital happens to have an entertainment station, like the ones from the Starlight Foundation, grab one on the first day and don't let it go for the duration of your stay.
We found that at night having a favourite movie playing non stop would help with the pain management. For instance my daughter would go to sleep but if she woke up with pain we would put the movie player on until the pain went away. Some times, if the pain wasn't the worst, that would help my daughter relax and then go back to sleep. We had many sleepless nights of video watching on and off.
Having visitors would have helped as well. The operation wasn't performed in our place of residence and therefore my daughter did not haver visitors other than us and her brother who spent many hours with her.
Make the room comfortable
Bring in flowers, balloons and provisions. Hospital rooms are a bit sad.
Bring in outside food
My daughter lost her appetite as soon as the pain started. I found however that, at home, even though she was still experiencing strong pain, her appetite quickly came back because I cooked what she liked to eat. If you can, bring in the food your child likes to eat from home.
Also you can buy fresh food at the supermarket that your child enjoys such as strawberries, and other berries. Or any other comfort foods your child likes.
Buy nappies for your child's age to bring to hospital
While we expected the hospital would provide those, there weren't any nappies appropriate to my daughter's age. When the catheter was removed, after a few hours we realised it would be more comfortable for her if she didn't need to run to the toilet every five minutes or use a bed pan.
The pain eventually stops
The first days it was hard to believe the pain would ever stop, as hard as to believe it was happening and we couldn't do anything to stop it.
This post was written as a debriefing on my own experience and hoping to help 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.
My site on this topic: http://bladderspasms.blogspot.com/
My daughter is 2 and she just had the surgery 09/25/08. Like you,her surgeon failed to tell us about the spasms.She does the same things your daughter does, screaming, sweating, kicking,just doesnt know what to do with herself.Like you said they come and go but she gets it worst at nite.You feel so helpless when they are happening, I just try to calm her down and get her to relax.The medicine doent really offer to much relief when she is having one.We are on day 6 now and hoping for some relief, how long should i expect this to happen?If there is any other advice you would like to share with me i would really love to hear from you.Thank you for sharing your story with us, i knew no one else who had this surgery done,and to hear your story really helps.
I think my reply is a bit late now. I don't know if in your search for relief of bladder spasms you came across my post at http://ureteralreimplant.wordpress.com/ where you can find contributions from other parents re pain relief for bladder spasms. There's not a lot that can be done but anyway, I hope your daughter has finally recovered.
I stumbled onto your posts, since I am a support group leader for Interstitial Cystitis.
As an IC patient, bladder spasms are one of the most painful part of this disease! I can be find one minute doubled over on the floor the next!~ This disease also effects children is often missed or diagnosed since it does not show up on standard testing procedures.
I have currently written a book for children with IC and it is at the illustrator now! From your story I really plan to go back and better explain bladder spasms along with some coping tools. I do not know what or how much your doctors would be open to using some of the treatments for IC pain with children however I hope by listing some of these coping tools maybe it can help a child going through this.
One of the first recommendations for bladder spasms if a heating pad or warmth. After my last surgery the bladder spasms kept me in recovery until they took warm blanket from the dryer and put them over my bladder.
An over the counter medication for bladder spasms is called AZO or Uristat, the prescription name is Pryidium. Of course ask you doctor about these medications especially in children and what dosage is safe. This medication turns the urine orange and stains everything!
One coping tool most doctors might not even know about is vaginal suppositories. These are compounded and can include different things but most include diazapam or Valium, mine also contain lidocaine to numb the area and benadryl! These are nice because they put the Valium by the bladder itself with little meds getting into the blood stream. These are a life savor for me now after any procedure or even a pelvic exam!
Valium is also standard in IC patients to control the bladder spasms. This is prescription so would require you doctors advice as well as a very low dose like 2mg.
The last thing we use to control my IC bladder spasms are actually bladder instillations of medications that numb heal and soothe. My instills contain, lidocaine , marcaine, a steroid, sodium bicarb and often an antibiotic!! Often with an IC patient
knowledgeable doctors will put the instill meds into the bladder at the end of a procedure so the patient wakes up with less pain!!
Again, these treatments are used frequently with Interstitial Cystitis patients that live with bladder spasms on a frequent basis. I hope that maybe, through this thread, some parents maybe be able to take this information with them, before a surgery when they consult their doctors to see if any of these pain relief options might be available to prevent unnecessary suffering! "Tough it out" for a child esp.is cruel. I personally have had 2 of my children born at home. Both were very large and even broke my tail bone and separated my pelvic bone...with no pain medications but the pain of bladder spasms can put me almost in tears! I am glad as a parent each of you took your child's pain seriously!
IC Support Group Leader
Director of MOARK Interstitial Cystitis
"And we know that all things work together for
good to them that love God, to them who are the
called according to His purpose."Romans8:28
Thanks for your post, my almost 2year old is currently suffering bladder spasms after uretric reimplantation surgery and stent placement. Poor thing is in agony and is so distressing to watch. Hospital sent us home with only panadol for pain relief and it's not helping, especially of a night, and I've been stressing over finding something to help, I'll definately be putting a heat pack on him tonight and hope that will give him some sort of relief! We too weren't warned about the intensity of the bladder spasms until we were in recovery and have spent the past week trying to find a way to ease the pain, if only just a little. Wish we knew the extent of these pains before hand so we could have prepared more. I too was the only one with my son at the hospital and it was extremely difficult, would have been a little easier if I had more help, there was no time for food, drink or showers let alone sleeping. Exhaustion is taking its toll not just on me but my little guy also. Will be so relieved once he is healed and can get a good nights rest.
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