Latest appointment update

[AliStan]

Thought I would just give you all a quick update on daughters latest appointment (I know I love reading other peoples to get any ideas or at least a sense that there is still hope!).

Quick back history....long and tortuous journey but we finally got under care of specialist bowel and bladder clinic about a year ago, diagnosis overactive bladder, been trying TENs and Tolterdine, managed to increase bladder capacity which felt like a big step but still daily wee accidents and felt like we'd stopped making any progress. Been back to Evelina today, this time had full ultrasound, all good with kidneys, tubes etc, bladder got wonky wall near rectum and rectum very full! Constipation never been discussed as an issue before as she goes every day and big solid poos, usually number 2 on the stool chart, but never any discomfort. Ultrasound clearly showing that there was a lot of poo in there (with no sensation for needing to go and having just been for a wee) and rectum was stretched to 43mm wide (abnormal!!). We've now been put on to Senna. Given she doesn't have any pain or witholding issues, the hope is that this will encourage her to go sooner and therefore keep passage clear so that it doesn't press onto the bladder and then that will give the bladder meds a chance to actually work on the overactive bladder (which is still there!).

I was really worried before we got there that nothing seemed to be working so pleased at least that we've got something else to focus on. The always warned us it would be a long road, even once we had the official diagnosis. They were definitely right on that although think would describe as more of a rollercoaster than a road.

Virtual hugs to everyone out there having a bad day, for us today felt like a good day so hope you all have a good day soon too. xx

[Helen36]

Thank you for this so much - we have our first appointment at the Evelina tomorrow and I am very nervous but I also crossing my fingers for new information to help. We also have an OAB and I am pretty sure it was constipation that caused it. We spent a long time working on it and although I don’t know the size in mm(!), we have got the girth of her poos down to something much slimmer! Accidents are so much better than they used to be (oxybutynin has helped although a bit up and down).

Thank you for helping my nerves and I will probably do a post about how my appointment goes! Good luck with the Senna x

[AliStan in reply to Helen36]

So glad it helped and good luck tomorrow. Please tell me ho we it goes.....fingers crossed xx

[AliStan in reply to Helen36]

Sorry, wrote that last night without glasses on.....clearly meant "how it goes" not "ho we it goes"!! Good luck x

[LauraLillyPugh]

I would be interested in knowing your experience with Senna as this is what my 4 yr old was put on by her consultant but similar to you, didn’t see there as being an issue with constipation as such as she goes every day and seems to empty herself but the initial scan showing rectum to be wider than should be with no sensation to go however it wasn’t a good experience so we stopped her using it...hope you get the results and steps forward you need xx

[AliStan in reply to LauraLillyPugh]

Only things we were told that might happen were tummy aches and diarhoea which would imply dose has gone too high. Starting at only 5ml and then working up from there. Only one day in but 2 big movements so far so planning to stick with low dose for a while and take it slowly. Will let you know how we get on but could you tell me what problems you had as would be good to know what to look out for?

[LauraLillyPugh in reply to AliStan]

We were given a tablet not a liquid...maybe that’s the issue! She was so badly affected with 5 severe pooh accidents in one day (mostly at school) and given her wetting accidents as well she became so distressed (as did I) so we stopped it!! So pleased that this medication seems to be working with you...I will definately be willing to give things another go if there are more positive experiences! They had advised us to cut the tablet in half to lessen the dose but by that point she was so worked up I couldn’t take it xx

[AliStan in reply to LauraLillyPugh]

I totally understand why you stopped - it's bad enough seeing our kids struggle with without adding to the misery. Our consultant was really clear that he wanted her to have the liquid so that we could manage the dose because (in his words) it's not a precise science and everyone reacts differently to it. Interestingly though when I took the prescription to the hospital pharmacy they initially tried to give us tablets so I suspect that may be the default. I was lucky the consultant had specifically talked about liquid so I could push back immediately.

[LauraLillyPugh in reply to AliStan]

This has given me food for thought!! We were meant to see our consultant tomorrow but the appointment has been cancelled now and we will have to wait for our next one but will definately think about asking for the liquid to try!! My daughter is on tolterdine and this massively helps reduce accidents and when there’s less accidents she Pooh’s better...it hasn’t seemed to come the other way round for us but I will try anything as it’s so distressing xxx

[AliStan in reply to LauraLillyPugh]

We're on Tolterdine as well and were told one of the potential side effects was constipation but given she had no discomfort, no soiling, was going every day (and quite large ones!), everyone, until now when it showed up on ultrasound, had discounted it as an issue.

Shame your appointment has been cancelled tomorrow, that would have been perfect timing to talk it through. Sounds like both our kids are on a very similar path so please let me know you get on when you get next appointment and best of luck.

[LauraLillyPugh in reply to AliStan]

Yes it does sound that way!! Will try to remember!! Yeah I was gutted about the appointment being cancelled but I guess it happens! She has been much better over the last few weeks so it has felt more manageable xxx

[Helen36]

Hello - me again! I have finally found 5 minutes to sit down and let you know how our appointment at the Evelina went on Tuesday. Brief backstory, my four year old daughter (very nearly 5 now) was referred there for day time wetting. She is on oxybutynin for an overactive bladder and movicol and senakot for constipation. We are pretty sure it was the constipation that led to the OAB and have seen a great improvement on the oxybutynin since last July with a couple of dry spells of 4-6 weeks, followed by more spells of day wetting (albeit not as bad as pre-oxybutynin).

So, the appointment: what an exhausting day! We finally left there after over four hours. My daughter was given lots of water to drink and asked to wait until she was bursting then wee on a special toilet that measured the volume and flow of wee, followed by an ultrasound to see if she had emptied properly and to look at her bowel. Then we had about 30minutes with the consultant at the end. I was really worried about how daunting it would be for her, but the staff were brilliant and she was a total trooper. They have a brilliant slide there suitable for kids up to about 12 and that is definitely her main memory of the day!

Interestingly, they found she's not emptying properly (dysfunctional voiding) - something I thought wasn't an issue for us. My gut feeling is that this might have been nerves about the weird toilet but the consultant suggested it can be a knock-on from the oxybutynin too. So we have some things to help us try and get her to empty better which is really important to avoid infections which would be a massive set back now.

They also found she is still constipated. This really shocked me as I was quite sure we had this under control. She does a nice slim, pale poo every day with only very occasional soiling now, but her bowel measured over 4cm and it should be 3cm for a kid her age. So just like you AliStan. They have upped her Senna dose to help give more of a push and it hasn't caused the tummy ache I feared it would. They also seemed confident the bladder isn't twitching anymore and so when we next get a dry spell (hopefully once the senna kicks in) we can drop her evening tablet of oxybutynin and see how she gets on. I nearly cried on the consultant when she said this - both with delight that there might be end in sight for taking that (I worry about long term effects) and fear at a spiral back to where we were pre-oxybutynin.

I found the whole day really exhausting and nerve wracking. 45 minute train journeys with an overactive bladder are never fun! but like Alistan - of all the good days and bad days we've had, this was definitely a good one and I feel like I have new information to move forward. xx

[AliStan in reply to Helen36]

That's great to hear. I'm so pleased for you both. Sometimes, just having that extra nugget of information, and so something else to work with, can make all the difference to how you feel about it all.

Interesting to hear what you said about the constipation, we've been starting on low dose of Senna and it feels like poos are getting softer but I'm not sure how I'll know whether she's really cleared out the original blockage as there doesn't appear to have been much more come out that normal (sorry possibly TMI but I'm guessing you'll understand). I'm tempted to up the dose to see what happens but don't want to get to point of tummy aches as currently my daughter is being so good at taking "the yucky medicine" and I don't want to put her off. That said of the 4 days we've been taking it so far we've had 3 dry days and one very nearly dry day and even 2 dry nights. I'm desperately trying not to get my hopes up but have got fingers, toes, and everything possible crossed!! Can I just ask, did they tell you how much to increase the dose by?

[Helen36 in reply to AliStan]

Wow - amazing news on the dry days and nights! It's so impossible not to get hopes up isn't it?! My daughter was first put on 3ml of senna that we increased to 5ml at the end of last year. We've just gone up to 7.5ml… and had a dry day yesterday but I am not counting any chickens yet!! I think there's been a bit more poo than usual, but not loads. Her need to go has definitely been a bit more urgent, but no more movements than usual. (No such thing as TMI on this forum!!)

On getting them to take it, I give my little girl one of the fruit chewy multi vitamins as a 'sweetie' for taking it which seems to ensure it goes down the hatch. I've found a calpol squirter rather than a spoon gets less on the tongue so is a nicer way for them to take it.

From what you said there might not actually be a blockage as such, but rather that the rectum is wide and therefore holding more than it should, which was my take on what we were told. By the senna helping push things through faster it will allow the rectum to slim down and then push through itself in the fullness of time. And if it's slimmer, it won't be pressing on the bladder. From the little I know, i think an actual blockage would mean you get overflow poo which is liquid and has a more putrid smell than regular poo. I think a disimpaction would be needed to clear a blockage, with movicol and the hospital would have said if that was needed. Does that make sense? But i'm no professional, so I might not be right on this!! I have noticed with both movicol and senna that after an initial dose that seems to work, it needs increasing after a short while, but I've always checked in with the continence team before doing so. You could let accidents be your guide, so if she starts wetting like before again, then look at increasing it. But then again, you could just try increasing and alway drop back down if it has an adverse effect. it's completely natural stuff.

Fingers crossed things carry on well for you. Your dry days are very exciting news! x

[AliStan in reply to Helen36]

Thank you, that's really helpful. We've started on 5ml but they said anything between 5ml and 10ml might be required so think I may up it a little and see what happens as still no real sense of urgency. Am making her sit after breakfast and after dinner and that's when it's coming out rather than her "needing" to go. Think you right though re the width of the rectum vs the blockage. Now you've said it, that's ringing bells - you end up taking in so much information a the appointment that I'm sure not all of it sinks in at the time!! Best of luck to you too.

[AliStan in reply to Helen36]

Sadly the dry days didn't continue into the weekend, volume of drink had slipped off a bit (after the initial positive push from the consultant) but upped the Senna dose to 7mls on Saturday eve and she did FOUR poos today, three of them when she actually knew she needed to go and only one accident so not too bad a day and progress of sorts. Sorry, there aren't many people I can share the excitement that four poos has generated in our house!

Found a great bottle in Tesco too - actually has times of the day marked on it that guide her to drink 1500ml by 6pm, the time markings mean she knows if she's lagging behind the pace and it's really encouraging her to drink little and often to keep up (without too much nagging on my part)......think the marble jar that will earn her hard cash might also be playing a part too!!.....and so the challenges go on.

xx

[Helen36 in reply to AliStan]

Hello and thanks for the update! Congratulations on the four poos ;)!!!!! To give you a bit of hope, when I did a massive push on getting my daughter to drink more the accidents got worse before getting better, so don’t be too disheartened. There’s quite a lot changing at once down there so give it time! It’s so hard to keep up the drinking though, the bottle sounds fab. My forgetful Nan has actually has one in her nursing home, but maybe don’t tell your daughter that!

We have also had a lot of poo since I last posted. The tummy aches are pretty bad now and the poo quite explosive when it comes. She’s had a couple of soiled accidents too which are unlike her these days and seem to be about not making it in time rather than trying to hold it in and a bit sneaking out, like the proper constipation days. Still wetting too, but only one or two a day so not too bad.

Going to call the continence team today for advice as the dose feels a bit high too me. I’ll let you know what they say! Xxx

[AliStan in reply to Helen36]

Am guessing your Nan doesn't need the marble jar too!!

Are you using liquid form of Senna? Our consultant told us if it got to tummy aches or diarrhoea then to just taper it down a bit. Apparently it does stay around so it can build up and so you may need to vary it every now and then. Be good to see if your continence team say the same.

[Helen36 in reply to AliStan]

Ha! She probably does, my mum is always tearing her hair out over how little she drinks! Also on oxybutynin but I think most ladies over 65 are! Something to look forward to - we’ll just get our kids dry and then be dealing with ourselves!! 🤦‍♀️

Anyway - really helpful advice on the Senna, so thanks and I’ll let you know. It is the liquid.

[AliStan in reply to Helen36]

Thank you for making me chuckle......what a joyous thought for old age!

[Helen36 in reply to AliStan]

Hello! Finally got a call back from the continence team yesterday about our Senna dose. She was really helpful. We discussed whether reducing movicol was a good idea to help find the right balance but decided not to meddle with that, especially as we move into warmer weather which could make her a bit more dehydrated. So she suggested just increasing the Senna more gradually. I had gone down to 6ml whilst I waited to hear from them and will now try increasing a little every few days until we find a balance that is still a nice soft formed poo and without tummy ache or soiling. She said doing it gently we might find we can get to the 7.5ml without the side effects we had before. We have our continence nurse appointment in three weeks so that gives us something to work on until then. How are you getting on?

[AliStan in reply to Helen36]

Sounds like you're getting good support from the continence nurses and hope the increased dosage works. We've stopped at 7ml for now as she's doing on average 2 poos a day, thin sausages and says she feels that she needs to go which I'm taking as all good signs that the Senna is doing it's job. Sometimes I wish I had a portable ultrasound to be able to see if any poo being left in but surely with the amount coming out there can't be too much!!

Still having the wee accidents day and night though but more days where it's just a tiny accident and the odd completely dry day too so feels like slight improvement there as well. Have found out her TA at school has a daughter with similar problems and she's been a massive help reminding my daughter to drink so she's consistently drinking 1500ml a day which has been an amazing help!

The hospital told me to start again with the TENS (to compliment the bladder meds) once the poo seemed stable so am thinking that might try and start that this weekend. I've held off for a week or so as she's really positive about progress at the moment and she's being really good even though she hates the taste of the Senna, adding the TENS feels like another step towards the medical regime taking over life but hoping we can do an hour in front of Britains Got Talent tonight to start us off! When we've done TENS before it's always hardest in the summer as she just wants to be outside having fun instead of having to sit still for an hour. Weather being rubbish this week might get us back into it!

Fingers crossed both our daughters are on a positive road.....

[Helen36 in reply to AliStan]

That is really good progress! Sounds like things are moving in the right direction for you but I can understand why the TENS is a pain for her. I think our accidents have reduced slightly but I’ve also noticed I think there might be a link to when she needs a poo... which would make sense. Fingers crossed for more dry days and nights xxxxx

[VJDC]

Thanks for all the comments - this is interesting because we're about to have our Evelina appointment for my 2 boys (5 and 7) and it's got me thinking about wider than normal rectums causing wetting... My 7 year old goes through patches of soiling (on top of OAB) and I haven't been able to figure out the reason for it. I have been thinking about asking for some sort of therapy for him, as the whole 5 year long debacle seems to be affecting him emotionally and I've assumed that is the cause of the soiling. But having read your comments on here, I'm now wondering whether there's a bowel involvement too. He's always very regular with poo and does 2 a day usually so I've always said to the consultants that I don't think he's constipated. Would it be possible for the sheer volume of poo to be a factor, rather than how long it's been stored for?!

On another note, it's SO nice to have people, even though I don't know any of you personally, that know what this daily rollercoaster is like - having 2 children with continence 'challenges' is so stressful, and no one else I know with children has any idea what it's like. So thank you for being there!

[AliStan in reply to VJDC]

Best of luck tomorrow.....and hang in there. Glad our story has given you other options to think about. I totally understand how draining this can be and there never seems to be any quick answers but sadly there are more of us out there on that rollercoaster with you than you'd imagine - all hoping and praying that one day soon we'll get off!

[Helen36 in reply to AliStan]

Good luck from me too! Glad to know that writing on here has helped you know what to expect and some questions to ask. Let us know how it goes. It must be so tough with two sets of difficulties. I have a potty training two year old so feel like I am up to my elbows in bodily waste most of the time but at least not fretting about her. X