Side effects of ureteral re-implantation surgery: bladder spasms

Join our support group if you would like to contact families with children with kidney reflux and with experience in ureteral reimplantation surgery.

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

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:

  1. re-implant both ureters
  2. remove a ureterocele, and
  3. 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.

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40 thoughts on “Side effects of ureteral re-implantation surgery: bladder spasms

  1. My son had a similar surgery when he was 2 years old, but apparently for a different reason. He was using the potty chair and sometimes the pee was brown because there was blood in his urine. (Thank God he was still using the potty chair.) We didn’t know then that he has an abnormally high pain tolerance, which can be a blessing and a curse. He had a kidney stone that had traveled to his bladder, but he couldn’t pass it. Apparently it was so large that it totally messed up his ureter as it passed through. They had to surgically remove the stone from his bladder, reconstruct his ureter and re-implant it in his bladder.

    After the surgery he was on four kinds of pain killers, including morphine. They kept him in the hospital for a week. They told us about the bladder spasms, but if he had them he didn’t feel them as much as a normal person would. I do remember he was in pretty bad shape for several days.

    He is now 21 and hasn’t had any complications from the surgery. Almost two years ago he asked me for an aspirin one day so I took him straight to the doctor. He had another kidney stone. This time he passed it, but with no pain. He passed it at work, and the only reason he knew was because “the pee stopped for a second and then started back up”.

    I worry a lot about him not knowing when he’s sick or injured. After reading these stories I am thankful at least he didn’t have to experience that pain.

  2. Odette

    I’m sorry to hear last night was bad. It’s awful and as a parent you feel totally impotent. The good news is that pain will go away. I’m sure you didn’t make the surgery decision lightly and I’m sure that it was the right decision. Why don’t you join our support group: http://health.groups.yahoo.com/group/ureteral_reimplantation/ You will find parents like you and me who’ve been through it or who’re going to go through it in the future.

  3. Thank you Teresa that’s good to know. We had another bad episode last night. We’re clueless on this, we just found out she had all of this not even a month ago and then boom she needed surgery.I hope I made the right decision. The cathara hurts worse then the cut itself. This is to much for a kid to go through.

  4. Odette, itching is typical of bladder spasms. Our doctor and nurses said it was common for kids to have itching and bladder spasms together. Bladder spasms happened more often at night with my daughter too.

  5. 7days ago my 8yr old daughter had the surgery. She was released after 4 days with a cathara. She was diagnosed with kidney reflux,with a stage 2 and 3 on the left side. The night before we were discharged she had a bad bladder spasm with itching. And the next three nights after at the same time so we give her benedryl and pain medicine which takes a few minutes but helps. So now we give her the meds before the pain starts and now we get to sleep at night. 3 more days we go to the dr to see if we can have the cathara removed. So has anyone experienced itching with the bladder spasms? It only happens night.

  6. Melodie, some kids have frequent infections because they’re predisposed to have them. The good thing about the surgery is that the infections don’t go up to the kidney and can’t scar it. If you haven’t done already, check out our support group. This topic about infections after surgery has been discussed in the past: http://health.groups.yahoo.com/group/ureteral_reimplantation/

  7. I have been searching for more info on this topic with little success or assurance. I was delighted to find this site, but it is heartbreaking to read of any child’s endurance to this (or any) condition. My (now) 7 year old daughter had reimplantation (for grade IV reflux) in May 2010. She then had 3 UTI’s: after 4 mos, 5 mos, 6 mos, and so was then put back on the preventative/maintenance antibiotics. But even on the meds, she is now on her 4th UTI since the surgery just 10 months prior. I am really worried she’ll have to undergo another surgery. Can anyone suggest a possible cause of this? I’ve been awaiting the surgeon’s call, but am growing a little impatient with worry. Meanwhile, my daughter continues to endure embarrassment from leakage and accidents-several times a week now. My pediatrician (understandably) has referred her back to the urologist/surgeon as she has no further answers aside from treating her, again, with a round of antibiotics for each UTI she gets. I’m not sure what reasons there could be for 4 UTI’s within 10 months of the reimplantation surgery. I am hoping for any words of enlightenment.

  8. My son is 18 months and is scheduled for the bilateral ureteral reimplantation procedure. All the posts here seem to be about older children. Has anyone had this experience with younger toddlers?
    I am extremely worried, especially after reading many of the post-op experiences with pain. My son seems to have a very low tolerance for pain and I think what is just as bad is that he can’t talk yet so he won’t even be able to explain what is hurting or understand completely if we ask.
    Our urologist says kids are often up and walking around the end of the day of surgery – can anyone comment if that is typical/common?
    The bladder spasms are extremely concering. We were told that these are less severe in kids who are not yet potty trained, something about less stress on the bladder or something. Does anyone know if that is true?

  9. yes i was told to take her home and perseviere with clamping, as at hospital (bristol childrens) they had been unsucessful in getting her to wee. she had had catheter in for 11 days in the hospital and i think her bladder was traumetised with the operation and everything. consultant said if i wasnt sucessful getting her to use bladder then she would need a catheter all her life!!!! this was enough incentive for me to keep clamping although she screamed in pain as her bladder filled. i cried many tears. eventually after a few days at home and in a warm bath. with me cuddling her, she passed urine. i then cried tears of happiness. on her next visit to bristol hosp her consultant was so pleased. katherine has grown into a beautiful healthy young lady and has given me a lovely grandson

  10. hi.i.looking at this site with interest. my daughter now 21 went through double reimplantation at age 2 years and 2 months, after frequent utis. after her op she was problem free. but was left with scarred kidneys. she now has baby boy. diagnosed with dupex kidneys and reflux.he on trimephoprim and waiting to see specialist. i was happy with my daughters operation as it made such a diffewrence to her life. although at the time it was vary traumetic. she came home with superpubic cath and i had to clamp it. hell! but we got her to wee eventually. my experiences with her make me feel confident that my granson will be ok

  11. I am so glad that I found your website. My 6 year old son had bi-lateral urethal implants in the begining of January. We were told that he would be in the hositpal for 48 hours after the surgery, we ended up staying 5 days. When the catheter was removed he was unable to void. His bladder then ended up expanding to double its size, he had 400ccs of urine. He was in so much pain and vomiting. They reinserted the catheter and kept us in the hostipal for 2 more days. He was sent home with the catheter, we were not even home 24 hours before he began screaming in pain and vomiting ever 1/2 hour. We took him back to the ER, as the doctors instructions and they told us he probably got a virsus from his stay. He then continued with the screaming and vomiting for the next few days. We were to return to have the catheter removed one week after leaving, once we did he voided good at the doctors office. I also forgot that is was extremely full of gas and stool after the surgery and was put on 17g of Miralax, senna sryup, 11g of fiber before leaving the hostipal and we had to follow up with GI. Once the catheter was removed, he continued to have bladder spams, to the point where his bladder was sticking out and rock hard, which you could feel and see. We then went back to the doctor, who told us to do that he had to void every 2 hours with voiding and then waiting a minute and void again. He has no feeling to go the bathroom on his own and has to push his urine out in order to void. We had to go yesterday and get a PH Probe done by GI and he is going for an Upper EGD in a week. We are almost a month after his surgery, which was January 5th and we are still not in school, because of the voiding schedule and still no feeling to go the bathroom. We were told nothing about the bladder spams as well, but once they started the doctor told us they should just go away. We were also told that only about 2% of kids have them after surgery and have any complications for surgery. He is still having serve pain at night, plus all our constipation issues, that we were told needs to be corrected or the surgery isn’t going to work. I just feel so helpless. He is in so much pain and so tired. We also were looking forward to everything getting better from surgery not getting worse. Thank you so much for your blog, it makes me so much better about what we are going through as a family. My 7 year old daughter has not been sleeping well, because of worring about her brother and stress. She is also scheduled to a VCUG just to be safe then sorry, which she doesn’t know yet.

  12. We live about 5 hours away from the hospital our 4 year daughter had her surgery at. We just made sure that she could lean back with her feet propped up while still in her car seat and safe. Take lots of pillows and blankets, maybe a DVD player to keep him occupied and plan for many many stops. To get back home we could have driven one of two ways, we chose the way with the most amount of towns and stops along the way. If possible, have extra $$ saved just in case you need to stop and stay the night along the way. You may even want to pick some hotels that are on the way and get their phone numbers just in case.

  13. Thanks for all of the informative info. My three year old son is having ureteral reimplantation surgery in three weeks. I am concerned about the ride home after the surgery. We live three and a half hours from the hospital where the surgery will be done. Any advice on a comfortable transport?

  14. We also live at that distance from the hospital and we didn’t expect the trip back to be such an ordeal with every bump triggering a bladder spasm. If bladder spasms hadn’t been an issue, then it would have been fine. By the time the kids are sent home they’re usually ok to travel. Otherwise you can consider flying, though then you have to wait for the plane, share the space with lots of other passengers, etc.

  15. Pingback: Reimplantation surgery on a 6 year old boy: Lisa’s story « Ureteral re-implantation surgery and bladder spasms

  16. Thanks for your comment on the site! I think that it is great you have set up this site to help others dealing with reimplantation and bladder spasms. Our daughter had the surgery at 5 months, but unfortunately it was unsuccessful at stopping the reflux. Like you, bladder we weren’t given a lot of info about spasms, and we were surprised at the amount of pain Lizzie was in when they occurred. We were very fortunate that her bladder spasms only lasted about a week. We may be looking at another reimplantation in the future, so this is all great information for us to have.

    Thanks for sharing your site with me. I have added your site to my blogroll and my links page – hope you don’t mind!

  17. Alycia, my daughter is 4 and although she only had spasms for a couple of days and one or two episodes beyond that, I will at least tell you how I prepared her for the whole thing. I wanted to make sure she knew that this wasn’t going to be easy but at the same time I didn’t want to scare her. I just told her that they would make her go to sleep, and then they would open up her tummy (I made sure not to mention the words cut or knife), fix what was wrong, and then they would wake her up. I explained that she would be asleep and wouldn’t feel a thing. I did tell her though, that when she wakes up, she will be in some pain but that it wont stay forever and that it will go away but it might take some time. I also said that they would give her special medicine that helped it not hurt so much. I approached the spasms the same way. I told her that she might have some pain that made her tummy feel like it was very upset and although she needed to tell me so I could give her some “special medicine”, it might take a few days to go away. I assured her that the pain would not stay forever and that mommy would be with her the whole time to help her feel better. I made a point to not make any promises of there not being ANY pain or that the pain would go away instantly. We are now three months post op and I can honestly tell you that it was much harder emotionally for my husband and I than it was for her. As far as the surgery is concerned, she acts like it was just another day and makes it a point to show family members and close friends her cut. She is somehow proud of it. Good luck!

  18. Thank you all so much for sharing your stories. My 5 year old daughter is scheduled to have her surgery in 7 days and my doctor has been presenting everything as no big deal. I feel that I can now at least prepare myself mentally and emotionally for what might be ahead. I pray for those of you who are still experiencing the aftermath of this surgery and hope things subside quickly.

    Does anyone have any good suggestions on how to prepare your child for this? I definitely don’t want to scare her, but I don’t want her to be shocked when the spasms kick in. Any words of wisdom would be appreciated.

  19. The stories told above all sound so familar.
    We are 5 days out after surgery and the bladder spasms at night are terrible. It is so hard not to be able to comfort your little one. Our son is 4 years old and complains of pain in his rectum during the spasm. Has anyone else experienced this?
    I have to go back to work in two days and we have a 10 month old daughter that still does not sleep through the night. We are up ALL night. The lack of sleep for everyone is making things more than tough.
    Good luck to everone!

  20. So, we are now 2 months post op from my daughter’s bilateral re-implantation surgery. Thankfully she did not have the spasms for more than a couple of days after surgery. She did end up staying an extra day in the hospital because she didn’t wake up from anesthesia as well as they had hoped. They also detected a heart problem in pre-op that they wanted to monitor. We went back to Children’s 1 month post op and to my surprise, after her follow up renal ultrasound, her kidneys looked worse than they did before the surgery. Thankfully she did turn out to have an early heartbeat and a heart murmur that are minor. I say thankfully because they are not worried at all about them and no formal follow up is needed unless we get concerned. We go back in 1 month to see if her kidneys have improved. If not, it could mean another surgery. Has anybody else encountered this problem? The doc is hoping it is just the fact that they didn’t detect this problem until she was 4 and that the trauma of the surgery made things worse. I am praying for that. But what if she does need another surgery, what then? She is still not the little girl she was last year. She got better after the surgery and is still on prophylactic antibiotics but she is back to the same before she had the surgery. She has dark circles under her eyes, low energy and has headaches nearly every day. We see our family doc this week to make sure that the headaches aren’t being caused by something else. Has this been the case with anybody else? I tell myself that things could be much worse and she is lucky to have such a relatively minor problem but come on. She is supposed to be a happy little 4 year old with not a care in the world.

  21. Thank you for all your posts. My daughter is post-surgical day 3 after bilateral uretal re implantation surgery. The pain was definitely downplayed when we discussed this with the surgeon. I called yesterday to get advice and they had nothing new to add. This has been a truly awful experience, she has not slept in 3 days (neither have my husband or I) and I feel so helpless.

  22. Im very to sorry hear about all the pain your children have been through. Im and adult who had to have a uteral reimplantion. Two months past the surgery I am still have bladder spasms. Something else you might be interested in trying is Magnesium. Research it first but according to my Chiropractor Magnesium helps stress reducing, muscle relaxing. It also sounds a little crazy but my Chiro and Accupuncure tell me to stay away from all dairy products and add more warm meals(no cold cereal, Sandwiches). Good luck everyone. Just food for thought

  23. Hello, all – this is Lisa L and I am giving an update on how our 6 year old son is doing on day 30. There is no more pain, and the true pain did indeed stop on about day 21 – 3 weeks from the day of surgery. The third week was not terrible – he could sleep – it was much better – probably more residual exhaustion than pain. By the 4th week, now, he is no longer having any pain with urination and he sleeps. In our case, we are now going for a new round of investigation, as our son is thought to be mildly autistic, and the trauma he has just experienced has wakened this condition up. So – anyone reading this should know that I’m writing, not knowing if what we are now experiencing is autistic behavior, or just fall-out from such a painful recovery, or both. Our son is doing great with urination, however, he is having bowel accidents. We are not finding the right balance of keeping his chronic constipation in check with the fiber laxative prescribed. He also has no interest in eating a varied diet – he got used to being waited on hand and foot and getting his demands met, and he is now getting to the point of (in my opinion) manipulation to get his way. He says, for example, “It will take a long time until I’m better, so I think I will just need to watch another program and have some candy. Oh, and by the way, I had a little accident in my pants because I was too focused on the program.” So – the great news is – no more pain! No more pain meds! And, we have a grumpy little guy on our hands who is not bouncing back into life like this Mom would wish for. Thanks for reading. Time to hit those autism blogs!

  24. Jill

    Thank you for sharing your experience.

    Don’t be discouraged. If you can already see improvements after day 5 of bladder spasms, your daughter seems to be doing better than mine did. We only started to see improvements after day 12 or so.

    All cases seem to be different though from other people’s comments one would think bladder spasms are more common and certainly more devastating than any doctor would have told you. I think doctors should spend more time with their patients. Our nurses didn’t think our daughter’s case was rare but the surgeon thought it was unusual. And so did our nephrologist.

    The anesthetist told us it was about 10% in 6-12 year old girls, but there’re boys who do suffer spasms too. I believe that the figure is higher than 10%. Even at 10% is quite high, particularly in kids. Kids aren’t equipped to deal with pain like adults.

    Though, I’m sure that for you and for us it’s no consolation to be told that it’s uncommon when you see your child in so much pain and for so long. But yes, eventually the pain stops and I hope it stops sooner than later for your daughter.

    Have you tried using pull ups at night. We found that while my daughter would still not sleep well, she didn’t have to run to the toilet and she could try to sleep.

  25. I am so glad that I found your posting. My 6-year-old daughter had uretal reimplantation surgery one week ago. She began experiencing bladder spasms once her catheter was removed, on her fourth day in the hospital. We found out at that time that her catheter was not inserted properly, causing even more irritation to the bladder and urethra. We were led to believe that the spasms are common and would only last a day or two once she was released five days after surgery. There has been a very gradual improvement, but she is still urinating every 30 to 60 min. or more often even at night. We tried ditropan, which doesn’t offer any relief. The pain with urination has decreased significantly, but the frequency has made it difficult for my daughter to get any sleep. I feel misled, because the doctors say that it’s not typical for these symptoms to last so long, but I’m finding out otherwise. We also have been told to “deal with it,” but that’s hard to do when it’s your child who is suffering. I’m discouraged to hear that this could continue for a week or more, but it’s comforting to read that it does end and to hear stories from others who have been through this. My best wishes and prayers to anyone who is currently going through this.
    Jill P

  26. Hello, all – I am so glad for this site, as it is the one place I can go into detail about our experience and feel I am helping others rather than dumping my grief on them. We are now past the two week mark – our son had the surgery on Friday the 19th of Sept. and it is now Saturday, Oct. 4. For the past two nights, he has slept through the night! For meds, we are now down to taking Oxybutynin, (Diptopan) and AZO – an over the counter brand of phenazopyridine hydrochloride, which decreases burning of urination, with hardly any use of Ibupropin. Also, we are still giving a mild antibiotic, Sulphameth, to prevent infection. We are also giving him Miralax to keep his bowels moving. All of the meds are prescribed by the surgeon. We ill have a follow-up visit in about 6 weeks. Here’s where we stand, now: Our son is out of his routine, not having gone to school for over two weeks (he is in kindergarten), he has gotten used to being catered to, waited on, using pullups, and having his demands met. Our challenge, now is to get him to recall being a “big boy” and using the toilet, and being a regular member of the family again. I’m taking him to a movie today as an encouragement to getting back to underware and toilet and life as a regular kid. (But he will be wearing pullups during the movie….he is 6, by the way.) Not that he is completely out of the pain, yet – but it is quite a bit less. The Oxybutinin (Diptopan) is being used now in the morning, and early evening. Same with the AZO. The toll this experience has taken on our finances and our home life is great, and as parents, we are very tired – especially from balancing missing work, missing pay, trying to schedule in working to get the pay, and the other parent having to do the brunt of childcare. Our 12 year old daughter has had a hard time. After the two week mark, we have the encouraging news that our son is no longer is terribly severe pain – this began to subside on day 12 with marked improvement. Now it appears our goal will be to re-train him to use the toilet and feel the sensations of needing to go. Lots of laundry to do! Take heart, folks. And, in closing if I could recommend anything to those at the beginning of this journey: 1) take time off work 2) get other adults to help, even for running to the pharmacy or grocery 3) get another trusted adult to learn how to care for the child for a couple of hours to give parents a break. I wish you all well, and hope that all my comments will help others in the future. Sincerely, Lisa L

  27. Your website was very informational. Our two year old daughter had both ureters reimplanted 4 days ago. She was originally diagnosed when she was 2 months old and had been on antibiotics since. She had a grade IV on her left side and grade II on the right with double ureters. We did a yearly VCUG to monitor and when we went back this year the reflux had gotten worse. At that time we spoke with the urologist and he recommended surgery, two weeks later she had another UTI. We decided to go ahead with the surgery. I expressed to the urologist my concern with the bladder spasms, we started her on Ditropan 3 weeks before the surgery. He explained that the Ditropan significantly decreases the bladder spasms. He also said they would not use a catheter unless absolutely necessary. The surgery went very well and she did very well following the surgery and did not need the catheter. She was actually running around the hospital that same night, we had to chase her with the IV pole. We came home the next day. She’s been doing fairly well since, except those sudden pains she gets following urination. Did your daughters spasms occur at any time or were they worse after urinating? She doesn’t complain of pain when urinating, but after she’s done she screams for 10-15 minutes. They do seem to be worse at night as well. She is on Tylenol with Codeine and Motrin that we alternate every 3 hours. The Motrin seems to actually help better that the Tylenol I’m assuming since it is an anti-inflammatory. She is also still on the Ditropan which we are told still should help with the spasms. She continues to do very well otherwise except when she urinates. It is very difficult to tell what actually hurts since she is only 2, she doesn’t necessarily understand how to tell us what is wrong and where it hurts. Like you I have been unable to find much on the internet regarding bladder spasms and pain control, so your site was very helpful. I just hope to be on the downhill now.

  28. Lisa

    Thank you for contributing with your comments.

    You seem to be going through quite a few medication options. I wish we would have been offered something else. I think it’s important other people know there are drugs that can be used for bladder spasms. We would have tried anything.

    Have you tried using nappies or diapers for older children? At least there’s no need to run to the toilet with every urge. The pain will be the same but not having to get up to go to the toilet may be less disturbing, particularly at night, and your son may fall asleep more easily. Maybe he won’t fancy the idea of wearing nappies at his age. Our daughter didn’t initially but I think she quickly realised it was easier not having to worry about making it to the toilet in time.

    By the way, my daughter has accidents at night now and then, probably one every 3 or 4 weeks. I hope they go away. She was never incontinent before the operation. And one of the procedures was supposed to stop her from becoming continent later in life.

    Going back to school was for us an attempt to take my daughter’s mind off pain. I think she became too focused on the pain she was experiencing. I think it helped but she was very tired after school for the first few days. But it was at school that she really started to space the toilet times. She was able to not go for more than 30 minutes whereas at home she was going quite frequently.

    Hang on in there. Not long to go now.

  29. We are now at day 8. We have had moments of seeing smiles on our son’s face and he is enjoying playing with legos with concentration until he needs to run to the bathroom. We still have night-time bladder spasms. My husband and I alternate nights, or split them – there is perhaps an hour at a time of sleep, broken up by many hours of frequent – every 10 to 15 minutes, sometimes more frequent – need to urinate. We are pushing fluids and working with the available meds. We have come back to Tylenol with Codeine and Oxybutynin, with the addition of ibupropin and AZO – an over the counter brand of phenazopyridine hydrochloride which I crush up and give mixed in with one of the liquid meds, followed by water – lots of water. (I have had all these meds and the amount and frequency prescribed by my son’s surgeon, and the mg amounts calculated by a pharmecist to be sure we are not overmedicating.) We had a brief one-day relief with using the belladonna opium suppository, however, this only relaxed him to sleep – it did not address the bladder spasms, so we are no longer taking that, since this cannot be mixed with the codeine and oxybutynin. My son has had little sleep for a week, now (and even my husband and I sharing duties have gotten more sleep than my son on our “off” shifts.) The hardest thing is the toll it is taking on our 12 year old daughter, who is staying with Grandma, as the screams of her brother are more than she can handle, and the nights of screaming do not allow her to get a good night’s sleep before school. My husband and I work opposite shift jobs, and we have each had to take time off, yet try to work as much as we can. Our finances were not ready for the amount of toilet paper, pull-ups, little toys and treats, and medication that we have had to spend money on this week, so we must keep that flow of income coming in. I am distressed at the constant cleanup. Laundry, cleaning the bathroom floor and toilet and sink areas. The regular household chores are neglected and I find myself at my wits end in the mess and chaos. I’ll check back in as things improve. He is quiet at the moment – TV, DVD’s, computer video games and lego creation are are saving activities between episodes. If only he would just SLEEP for a solid chunk of hours – I would love to give the house a good cleaning for my own sanity! Until next time…….Lisa L

  30. It has been 5 days since our 6 year old son’s bladder surgery, including reinserting the ureter, having a catheter, and many of the other things I have read on the posts above. He is in excruciating pain – frequent urination, only drops coming out, and no sooner do we get him comfortable in bed again, does he have to go. It seems he is growing older beyond his years before our eyes. He is so tired – and though he was a great trooper during the hospital stay of only one night – the day after day, night after night pain is now wearing him to the point of hitting the wall in the bathroom and being quite angry and distressed. My husband has taken the majority of the care so that I could go to work, and it has taken a great toll on our own ability to keep it together. I do thank you for starting this post. I will share this with my husband, who is sleeping tonight, with earplugs in, as I take tonight, which is night 6 after the surgery. Today, I was issued belladonna opium, to be administered by suppository. The afternoon dose did help our son, though it did nothing for the frequency of urination. But, tonight’s dose is not seeming to make a great difference. Since the first day and night on morphine, nothing has helped as well as the morphine. Thank you. As he is currently in a little sleep – I shall try to lay next to him so I can catch some rest before the next bout. ~ Lisa L

  31. Also, he is taking Ditropan for the pain, and tylenol with codeine. He seens a lot better today, though he has a lot of discomfort at the incision sites..he has three incisions, one on the left, one on the right, and one through his belly button.

  32. We are no strangers to this, unfortunately.
    My son Ricky, who is 8, went from birth until last summer with an undiagnosed primary blocked megaureter and had been experiencing what his pediatrician had thought was stomach issues on and off for the past 7 years. Last summer, his pain became severe enough that we took him to the local hospital suspecting an intestinal blockage. His symptoms were severe left side pain and severe vomiting.
    That incident resulted in a CAT scan being performed. We were told “We found nothing, but his left kidney is enlarged, but people are born like that so it is no big deal”
    NO big deal my ____. I immediately made an appointment at Children’s Hospital of Pa in Phila, and within an hour of his testing, they knew exactly what was going on with him.

    Because we waited so long before he was diagnosed, he had significant kidney scarring and a severly weakened ureter. He underwent three balloon/stent surgeries in hopes that this would be all that was needed, but unfortunately the ureter was not cooperating and continued to “kink”, causing the same initial symptoms as before the original diagnosis. only with more frequency.

    We just returned home today from his uterer reimplantation surgery, and I googled same and found your blog.
    It is so good to know that there are others who are going through this with their children. There is nothing worse than seeing your child in severe pain and not being able to take it away.
    Feel free to email me, it would be good to talk to you.

  33. I think I forgot to say that we were told she’d be in hospital for at least 7 days, that she would have a catheter in for 7 days as well. No mention of side effects. With a catheter in place, and a morphine infusion in, she couldn’t really move from bed.

    Let me know how your daughter goes with her surgery.

  34. Ashley, I never asked questions about pain. But the surgeon didn’t mention anything about the spasms either. The anesthetist said just before the operation she could suffer bladder spasms and that we needed to understand that sometimes there’s nothing that can be done about it. That pain relief will be administered but she may still have “discomfort”. When we saw the anesthetist 6 weeks later, for the stent removal, he told us that 10 or 15% of kids suffered bladder spasms. The nurses said all kids have them. The older the more likely and girls are more likely.
    Everything else we were told turned out to be like they said. My daughter wasn’t running around the day after but she was feeling quite well, compared to when she had the partial nephrectomy. She didn’t have nausea from the medication or anything. She was well for 2 days after the operation. Her catheter stayed in for 7 days and catheters tend to aggravate spasms apparently. I think that spams is a real possibility though I hope your daughter doesn’t have to go through them because it’s hell on earth.
    The doctor said that she would have to stay in hospital for 7 days, but I’ve read in some hospitals kids are sent home with catheters in place. It may depend on the protocols they follow at each hospital. Also my daughter’s surgery was quite involved, that’s why she had to stay 7 days rather than the usual 3 or so.

  35. I am glad that I came across your site today. My daughter is having bilateral ureteral reimplantation on Monday. She is grade IV on the left with two ureters and only grade I on the right. They say that part of her left kidney is very swollen also so they will decide to what extent it is damaged when they get in there. She is only 4. Having surgeries myself and also being in the medical field, I know it is not as simple as they tell us it is. Even after all of my many questions (I had over 100 that I wrote down) have been answered they still tell me she will be up and around and out of the hospital the next day. I am glad that I read your experience, especially with the cramps, so I can at least prepare myself. I am just curious if they told you up front how long she would be in the hospital or if they told you what they told me and then it just developed in to 7 days?

  36. Oh my goodness ! My son who is 5 years old had bilateral ureteral reimplantation 6 days ago and my husband and I have been losing our minds. The first few hours after surgery were great. That night they the spasm started and it was just horrible. For 20 minutes he would scream, cry and writhe anf then fall asleep for 20-30 minutes and it would start again. This has continued now into post op day 6. He does great all day save for the need to urinate with great urgency, every 30-60 minutes . The spasms start around 10 PM and my husband and I trade off just sitting on the stool in bathroom while my son screams. I have never felt so inept as a parent or a nurse. The surgeons office has us doing urine cultures and bowel clean outs…… Thanks for your site. I agree the spasm aspect is clearly downplayed. Although we don’t look forward to the next week or so I am more assured of the cause. Thansk again

  37. Thank you for sharing. Our daughter had her ureterseal operated on at 3 days old and a couple months later since it reformed. Now she is 6 months old and has her reconstructive surgery in July. She has three uretors on her left kidney and still reflux to both kidneys even with the ureterseal being gone finally. She had her first UI at 6 months. They discovered her abnormalities before she was born via ultra sound. Did your daughter stay in the hospital for 7 days it said? They havent mentioned the length of stay, or recover time, wound care etc please email me anytime She is 6 months old thanks Heather

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