hello, I'm new here, was directed here by bladder and bowel for my daughter who is about to start clean intermittent catheters!

[Charlie5angel]

Hi I have a 12 yr old daughter who has all sorts of kidney/bladder problems since 8 and we got to,d last month that she us to start clean intermittent catheters! We have been for training and unfortunately her first few goes were unsuccessful 😢 She had a bad experience about 3 years ago with a catheter and is absolutely terrified bless her, just wondered if anyone has had to deal with this with their child, we are back in London hospital in February and have been told she must be mentally prepared for it to be put in that day which we are all worried for her about, we have been given 3 weeks supply of catheters to practice with at home in her own environment but still nothing, I could really use some support right now as I feel so helpless 😔

[Alibee75]

Aw that sounds so tough. I haven't got experience of this but hopefully someone will be able to share.

It's so difficult when the emotional side gets involved and they get scared or embarrassed isn't it, especially going into the teenage years I bet.

Thinking of you both, I hope you get through this.

[Charlie5angel in reply to Alibee75]

Thank you, we will get through this, it's just so difficult for her and you're right, I think with her age, it's the whole embarrassing issue about doing this in front of nurses, mum etc, it won't always be like this for her as when she finally gets the hang of it, she will do it in privacy, but we just need her to go them few extra steps and progress further, thanks for your concern xx

[Alibee75 in reply to Charlie5angel]

Aww good luck to her x

[Hidden]

Sounds stressful for the child. Is this really necessary? What are her symptoms without the catheters? Repeat UTI's can be helped with probiotic supplements in my experience. Sometimes UTI's can be mistaken for repeats when it's the same infection that is waxing and waning with the wrong antibiotics.

[Charlie5angel in reply to Hidden]

Hello, thanks for you reply. Unfortunately my daughter has very complex bladder issues, none of which she has never had a UTI, I wish it was that straight forward to fix with antibiotics, she has remnants left of a uteretocele which was due to an operation she had 3 years ago to try and correct poor draining which has caused a blockage which has now resulted in severe bladder retention also with leaking during the day which she has no control over due to her bladder simply not working, we have had urodynamics which was unsuccessful so now her consultant would like her to try self catherisation, we see him back in April where we will may have yo contemplate her having surgery to remove the blockage but we were warned that its not something that has a good success rate and she could still end up with a bag so obviously however stressful it may seem, for her sake at this age we have got to try, it's not easy and we still gave a couple of months to master it, hopefully in time this we be easier for her and if she successful, it will make such a difference to her life, we were told up the hospital that children as young as 6 were had been trained, it's just going to be a time thing.

[Slice in reply to Charlie5angel]

I'm sorry I haven't seen this earlier. I know it's been 3 years. How are things going now? Does she still need to do CIC? Is she handling it better? If she is still having problems, you might want to look into the possibility of a Mitrofanoff procedure done. This procedure will create a new passage through the belly button and down to the bladder. This will make it easier for her to cath herself and can pretty much do it anywhere as it doesn't require access to the original urethra. If she is still having issues, I would suspect that they have gotten better as she has matured. 12 is a tough time for any girl as it's probably right in the throws of puberty. Hope all is well!

[Charlie5angel in reply to Slice]

Hi there, goodness has it really been three years! Thank you for replying and asking after us, it’s very kind if you.

Unfortunately CIC was unsuccessful after several attempts and lots of training, she became quite low and then was referred to the medical paediatric psychologist at the evelina hospital for a few months was which worked great for her and was obviously what she needed, whilst she was seeing the psychologist the consultant opted to insert a supra pubic catheter so at least she could empty her bladder, she had that in from june 2017 - October 2018 and it was changed every 3-4 months. It was causing her a lot of discomfort and she was getting lots of infections and over granulation from the site wound, they then changed over to a mic-key button and has had a couple of Botox ops to help with the bladder.

She has it changed over with gas and air as she finds the whole thing incredibly distressing and painful. We are now currently on a waiting list for an operation to repair the bladder with the hope in getting her to drain normally, he will basically have to re plumb her so to speak, she’s slightly terrified as we were told she will end up with three catheters to start with then gradually going back to one until she can hopefully drain normally, if this is unsuccessful then it will resort to perhaps the mitronoff but we are hoping the operation will be successful, sorry to go on but so much has happened in three years, she’s even changed schools with an EHCP in place, I hope you are well and look forward to hearing from you, I haven’t posted for a while as i find it difficult sometimes and we just push through but she’s much better than before, unfortunately she’s just been suffering with more UTIs since having these catheters so that’s really why between us all including her have decided to go ahead and try and sort it, she really wasn’t in the right head space before and just found talking about catheters really hard but things have improved, she’s trying not to let them take over and control her, she has a strong support network in place and the new school are wonderful and are always there to support her in anyway they can, we’ve been very lucky to have such amazing people involved in her care. Xx

[Slice in reply to Charlie5angel]

Sounds like she is in a much better situation mentally and that is fantastic! I don't know too much about it but it sounds like you might want to talk to them about skipping the rest and going to the mitrofanoff procedure. She will still have to cath herself but I can only imagine that it should be much easier with this procedure. BTW, I've never heard of using a Mic Key button for bladder drainage. The likely last option would be a urostomy. Remember that at 14/15 she needs to do as much of this as she can herself. Encourage her now to be making the decisions on what's happening to her with your backing those decisions. For her own mental health she is at an age where she needs to be managing this herself as much as possible.

Last but not least. I know or your daughter don't know me other than these posts, but would you please give her a big hug for me? Just tell her it's from a "friend". Again glad that things have greatly improved!

[Charlie5angel in reply to Slice]

Thank you so much, that’s very kind of you, all I can say is that we are all very proud of her and what she has achieved up till now, she is stronger than she thinks and is managing an awful lot by herself which is so much better and getting regular visits to CAMHS and other professionals, we will keep you posted! Thank you for asking after her x