Baby Stoma - Searching for mums who've been through/going through this...

[mrshippy]

Hello

My 4 mo DD had a colostomy op two weeks ago. I would really like to get some info/advice/ support from other parents who are going through/have gone through it with their babies.

My partner and I just throught we had mastered the whole bag cutting thing and this morning DD has a little white 'blister' on her colostomy where it has been rubbing her. She is such a wiggler that when we cut the bag as we've been told to, it rides up and rubs the bottom of her colostomy as she draws her legs up. So now we have cut the bag bigger and have more skin exposed. I've reached a point where I would really like to talk to other mums about this and other issues.

I've trawled the net and the only charity that I've found for mums of children with colostomys has closed.

Anyway, if there's anyone out there who would be willing to have their brains picked by a slightly anxious mum, who's new to this and wants to do everything she can to keep her DD's colostomy healthy and comfortable - please post here!

Hiya Pumba, yeah i think judging by her reaction to the suppositories she may feel the same. I have just done my first enema for her and am waiting to see what happens. Again, it took a lot of blackmail, persuassion and tears (hers and mine, although mine not til she left the room!).

If you dont mind me asking - whereabouts in the country you are and have you managed to find a consultant you're happy with? We are in scotland and i would just like to know that we have options if need be. And have you found any support groups for your daughter as opposed to you? I think mine would really benefit from knowing shes not alone. How is your daughter now?

Hi all, how is everybody doing? We had Cerys's appointment today so I thought I'd update:

Didn't see Mr Griffiths himself, but his associate (I'm assuming registrar) from the last appointment was there, so he was well aware of everything. Told him we'd had a nightmare 3 months and told him everything! Poor bloke didn't know what had hit him lol!

Anyway, he examined Cerys as usual. He said that we need to continue to try and train her bowels but wants to include the movicol into the plan. So, we are to give her movicol each day as before but in addition we are to give her the suppositories every other day and put more water in the movicol - she needs to be drinking as much water as possible. To be honest I've had to give her a few the past week or so as she had got rather solid, and now that we have the aquagel it has got slightly easier.

Seeing them again in 3 months, going to keep a more detailed diary this time!

Sorry to post and run, got back from holidays yesterday and still getting over it! Still haven't got my date through yet but hanging on in there...

Thinking of you all, PLP xx

Hi PLP,

It's good you got to see the specialist and have a slightly new plan again, even if it must feel like you've been doing this for ages already. What's the situation with Cery's poos now? Is she still having leaks or how is she getting on?

I hope things are manageable for you all. What's aquagel?

We've still got about 10 poos a day to contend with, things have got slightly worse again to be honest in terms of frequency. They think her bottom might be getting smaller, so she'll have another dilatation on Tuesday. Can't wait to be honest and really hope it will actually make a difference. Still keeping that poo diary in any case...

Other than that our lo is really well and happy (that's apart from intercurrent illnesses) and still eating a lot, which I'm very pleased about.

Will let you know how it goes after the dilatation.

Hope you get a date for your cyst soon!
Kxxx

Thanks krautmum, hope all goes well on Tuesday and that it helps to improve things! So pleased to hear your LO is eating well, that's half the battle sometimes. Do let us know how you got on?

Aquagel is basically just a lubricant, I think it's water based so no chemicals or anything. Seems to really help, although the GP was confused as the glycerin suppositories are already quite slippery...

Can I ask a question...? What information do you record when you keep the poo diary, and how do you record it? I've have phases of keeping them since Cerys was born, but just recently I printed off a bristol stool chart (paediatric) and stuck it in the back of the notebook I was using to try and help me 'categorise' her poos. I'm just interested to see what others do - not the sort of thing that comes up in conversation in rl!

Hi PLP,

I'm just recording how often she poos and how big the poos are, just to give us an idea of output and frequency, to see if things are getting better or worse and to gauge if she is pooing enough in volume. I do it because otherwise I would have no clue from one week to the next, how things are going. We don't record the consistency as she always has soft poos due to the Movicol, so no real difference for us to record. This way at least I can tell the surgeon what's happening from one appt to the next.

Once she's had the dilatation we will probably try and reduce the dose of Movicol again and see how she goes. I suppose that's the dilemma. You got to give it to her to keep the poo soft so she can get it out, but will also increase the frequency I suppose.

Will let you know how we go. We're off camping at the weekend so hope it won't be a poo nightmare...

xxx

Hi all, just popped in to see how you are all doing? Hope you're LO's are doing OK and that you're coping with the day to day challenges?

Cerys had her 4th Birthday yesterday, we made a big game out of throwing away (not really) all her pull-ups and nappies and she is now in knickers. So far she is clean and dry overnight, although she has always been like that. It's early days but so far it's about 50/50 as to whether she does a wee in the potty/toilet or in her knickers, I'm sure she'll get there though. As far as poos go, she did a little pellet and came a brought me the potty with it in there - unfortunately it would seem it was in her knickers then she put it into the potty, bless her! Have decided to give it a week and see how we go - she starts a new playschool on Wednesday so it should be interesting!

Hope you're all well and have enjoyed the holidays xx

Hi all

Sorry haven't been on for ages - moving house, DS being a nightmare and just got back from holiday and all of a sudden two months has passed!

Will read back to catch up and see how you are all doing but just wanted to let you know that finally, 14 months after her PSARP Ella has a date for her reversal - 28th September. Its crazy that it has taken them so long to schedule and even worse we had a call the day we went on holiday (2nd Sept) to say that they were rescheduling her op from the 7th to the 14th - we had had no notification of the 7th so it's a good thing they called or we would have been a no show.... Have now agreed on the 28th subject to them changing if something more urgent comes up...

I am pretty scared about the post reversal difficulties I know are pretty common. Sounds daft but her stoma is part of her and has been OK to manage and I can't imagine her without it she has had it for so long (18 months). Just wondered if anyone who has been through it could offer any tips for coping in the early days.

It doesn't help that DS (3.10) has bowel issues too and still isn't potty trained, is on Movicol and fluctuates from overflow constipation to excessive pooing. So I'm feeling pretty overwhelmed at what lies ahead to sort both of them out. Have a Dr apt for DS this week and going to ask for a referral. I also suffer badly with depression and OCD and it's not great at the moment.

Sorry for the woe is me post - need to snap out of it and concentrate on sorting out DD and DS - the future just seems a bit grim at the moment and when I saw a friend today who has just potty trained her almost 2 year old it made me feel sad and a bit jealous - why did I end up with 2 DC's with bowel problems - not fair for them or me :(

Hope you are all OK and the LO's are doing well

Rach xx

Hi all just quickly wanted to give a big hug to RAchel xx hope you're feeling better. It gets really tough sometimes and everyone always comments on how well i cope ( I cried because I couldn't find my keys last week) sometimes it's just shit isn't it. But those days make the good days better. Hope all goes well with the reversal. Is Stella your stoma nurse. She was brilliant after dds op with magic creams and tricks with movicol etc. ............ Hi PLp glad Cerys is getting there xx .............krautmum we still have a poo diary even though she's much more regular now, it came in really handy when playing with the movicol........my little monkey is doing really well. For the first time EVER we are going 6 months without an operation or appointment. We are still doing her dialations daily and now up to a hegar 15. Shes becoming less compliant as she gets older but it's either we do it every day or go under ga every few weeks. She uses the potty at home for poos and wees now as she's run around naked for so long she saves me the trouble of having to run after her with the potty....so there is hope and I'm hopeful she will stick to it. hope all your lo s are fab xx

Thanks sugarbea I really appreciate it. It helps knowing other people in the same position. Glad to hear you LO is doing so well - how old is she now? It's great that she is using the potty!! It is lovely when you get a break from surgery - Ella hasn't had a GA for almost a year now although she has had a few tests and scans.
Haven't really had much involvement with the stoma nurses at StG's - just the initial showing us what to do and that was it. Have seen one in Guildford a couple of times - but I guess that may all change post op.
How is everyone else getting on?
R xx

We are still awaiting our second Op to 'fix' his bum. In the meantime we have more or less given up on the bags and are using ilex paste and extra nappies.

Recently our little one has had two nasty bouts of viral gastroentroitus (rotavirus) and it has really knocked him for six. Both times he's ended up in hospital for several days and we're told dehydration is a major issue when they are little and have stomas :(

Has anyone else had more trouble than usual with virus related issues like this? He still doesn't seem right even now. Its so frustrating when we have been told we need to get weight on him before his next Op and this keeps happening.

Hi All,

RachelHRD, so sorry to hear you're having such a rough time. I find it hard enough with our daughter and a healthy 3 year old (today!) so can imagine how overwhelming you must find it with both of them having issues with their bowels. Have you had any success at all with dietary stuff like prunes etc, or is the Movicol the only thing that keeps him going?

Great to hear you have a date for the reversal. the first 6-8 weeks were horrendous for us and even now, the constant nappy changes are making life a lot more challenging, but I don't ever wish to have that stoma back. For us, Metanium and Orabase worked really well. Even now, when she gets sore, we always use a layer of Metanium first and then Orabase over the top. Even though she can get sore very quickly sometimes, we are mostly on top of it.

I'm sorry to hear you also suffer from depression. I have had similar problems myself int he past and I know how horrible it is. I hope you feel better soon and you can get some help to keep on top of everything. Let us know how you're getting on.

Sugarbea, hi and great to hear your lo is doing so well. How many times a day does she poo?? Our daughter had another examination under GA end of last month. Surgeon was happy with her anus. It's 11mm, which he says is fine and he didn't dilate. She's on much less Movicol now as directed by the surgeon, but unfortunately still pooing just as frequent as before (about 10 x a day), just much smaller amounts.... How long did it take for you lo before things slowed down? It's been 7 months since her stoma reversal now. Would be good to hear how it was with your lo. Let us know how she gets on with the potty.

PurpleRach, our lo had the same problem. She had a respiratory infection every 2-3 weeks and she had 4 tummy bugs in the space of a about 7 months. She was also in hospital with them twice, as she was throwing up nasty green stuff. Had the same problem, any weight she might have gained, was immediately lost again after one of those bugs. She's a bit better now when it comes to illness, not quite as frequently ill, so I hope she will eventually gain some decent weight...

PLP, happy belated birthday to Cerys! How is she getting on with the potty now? And how is the new play school?

I'm just trying to settle our lo in for 1 day at nursery. Quite nervous about it all. We know then so well with all their little pooing/eating habits and it seems difficult to convey that all to the staff there without putting them off completely! Have a meeting with them on Thursday and hope it will be all positive.

Love to everyone and hope to hear from you all soon
Krautmum xxx

Thanks Krautmum I appreciate your post. Have stocked up on Orabase and some others to try and will get some Metanium if they don't work. Have you used Vaseline at all or did you find you didn't need it?

Have stocked up on nappies as they are on offer in Sains - have about 400 to keep us going for a while!!

Dreading it but know it has to be done.

Hope all the LO's are doing well

R x

Hi RachelHRD,

Sounds like you're prepared! I have worked out I must have changed our lo's nappy close to 2000 times since her reversal in Feb. Hope you fare better than us! We were told to mix the Orabase with Vaseline (50/50), which is what we have done. We're using some old face cream pots in which we make up a batch, that way you don't need to mix the two creams every time you change her nappy. Got a pot at home and one one in the nappy changing bag. We went through a lot of Orabase for a while, but now only use it occasionally and otherwise stick to Metanium which works well. Good luck for tomorrow. Hope it all goes well and Ella copes well with the transition from stoma to pooing. Let us know how you get on.

Hello everyone else
Question to those of you with lo's already potty training. Our daughter is still pooing as often as she was about 4-5 months ago, it's not really getting any less frequent, even though her bottom is apparently big enough and we're reduced the Movicol. How often a day did your little ones poo a day in the first 6-12 months after the reversal and when did it get better?

Would love to hear, as it seems to be difficult to find any info about this anywhere.

Hope everyone is ok
Krautmum
xxx

Thanks Krautmum. Ella is first on the list tomorrow so at least we won't be waiting around and she won't be too annoyed at not getting any breakfast!

Thanks for the orabase tip - will try that out.

There is a good IA group on facebook with members in the State/Canada and over here - might be worth joining and posting there for advice re the pooing frequency. If you want to join PM me and I can add you as a friend or direct you to it.

Off to bed now to prepare for an early start. DH is with Ella tonight and I'm at home with DS and we need to leave around 7am to be in in time to take her down. I'll then stay with her post op - dreading it but it needs to be done and is one step closer on the road to continence (hopefully)

Rach xx

Hi everyone.

So sorry I haven't been around. I'm going to read through & catch up tonight once the kids are in bed. Just wanted to say hi whilst I have a sec though.

I fell apart a bit in June after DS's reversal which is why I stopped posting. The dilations were the straw that broke the camels back. I couldn't really face talking to anyone, even strangers on the internet! I have been thinking of you all lots though.

A couple of things have happened which I really want to tell you about, and which I feel v guilty for not posting about sooner.

First is Ilex. It is the only thing that stops DS's bottom from becoming a horrendous mess. We are spending a fortune on it as it's not available on prescription here yet but we are campaigning to get that changed. Because DS has v little colon left, his stools are very liquid and caustic. Without Ilex his bottom is raw and bleeding within a couple of nappy changes. We ran out last week because our delivery didn't arrive & we ended up in A&E where a lovely surgical reg broke into a store cupboard where they keep trial tubes & got us some!

The other thing is probiotics. My sister is a doc and she recommended we try them . We use VSL 3, which is a super strong probiotic. Within a few days DS went from pooing 18-20 times a day down to 8-10 times a day. This too is costing a fortune but for the difference it makes to him it is worth every penny.

And just last week we stopped giving DS gluten. It toohas had a massive impact. He is pooing even less (has woken up with a clean nappy a couple of times which is miraculous!) and he hasn't had diarrea the whole week. Usually half his nappies are diarrea and half are just loose.

I know all our babies are individual and the above might not be relevant to all, but they've been big news for us so I wanted to tell you about it.

Hope all are doing well, will be back tonight :)

Hi Hairymelons,

I'm glad to hear things are looking up for you. It sounds like you had a rough time. I don't envy anyone having to do the dilatations at home, so no wonder you found it all too much. We all get to that point once in a while, but hopefullt better times are ahead of you. How often does you lo poo a day now? It's great when they manage to go through the night without pooing. It's one things changing lots of nappies in the day, another having to get up in the night and do it and then try and settle them again.

It sounds like the probiotics have made a big difference for you, amazing. Do you think that's something to do with your lo missing a lot of his colon? Our lo is just on another course of antibiotics, after which I normally give her some probiotics anyway, so will see if it makes a difference. She's pooing a lot less than some, by the sounds of it, but would be great to get it down to a slightly more "normal" amount. I'm worried about it getting cold and not being able to change nappies outside anymore. That will make going out rather difficult...

All the best and look forward to hearing how you're getting on
Krautmumxx

Oh, and could you let me know which ones of the VSL 3 probiotics you are using exactly? Is it the sachets and how much do you give a little child? How old is your lo? Our daughter is 18 months old.

Thanks!
Kxx

Hi Hairy

Sorry to hear you have been having a tough time of it - I'm not surprised you had a wobble - the dilatations must be very hard to do at home. When Ella had her fistula pre colostomy we ended up doing washouts at home as she kept backing up. They were horrendous especially as she was only a few weeks old. I look back on that period now and wonder how we got through it - so big hugs to you.

Glad to hear the Ilex is working but it is such a shame we can't get it on prescription over here. We are using Orabase and Vaseline with Ella and that seems to be working although she has times where she reverts to being red raw - last week when she had a cold she went from almost clear to red raw in 24 hours :(

Ella is now 5 weeks post reversal and is doing well. The op went well and we were in for 5 days - had a few problems with canulars - had to have hers replaced in the early hours following the op which took 2 Dr's and me restraining her and it was absolute hell - I was shaking afterwards. Also she wouldn't take Movicol in water - we had to force syringe 65ml into her = again awful and the Dr on at the time said she'd just have to put up with it !! Thankfully the pharmacist came up with an alternative which she has 3x5ml orally daily and she now bless her takes it without complaint even though it tastes vile!

She seems to have some control and definite awareness when she is pooing which I'm hoping is a positive sign. At the moment we are on 8-10 nappies a day which is much better than I had expected - I think it might help that she is older - 20 months now. She is also farting like a trooper!!

Been having problems with the hospital - had to ask to see her consultant post op (!!) and he said she would have a follow up 4-6 weeks. Chased up last week to be told that he has retired!!! Finally managed to speak to his secretary today having left a message last week and she apparently has a new consultant and the sec is booking an apt with him - earliest will be 16th Nov but prob more like early Dec.... No-one has seen her since the op and TBH we didn't really get any support whilst there in terms of advice on diet, skin care etc - I had to ask everything. Am a bit fed up with them - thankfully the actual care she gets is great and the surgery fine - but after care and support sucks really!!!

On a more positive note applied for DLA on 18th Oct and have just seen a payment in my account for the lowest level. Didn't think we would get it so am really pleased it has been agreed - will at least help with the cost of nappies. I should have applied when she was born but at least we have it now.

Hope you and all the LO's are doing OK. It has gone a bit quiet on this thread so would be great to hear how everyone is getting on

Rach x

Hi RachelHRD,

Great to hear Ella is doing well after her reversal, that must be a relief. Does she find it difficult to poo ir is she quite happy with it? Our lo found it very hard for the first couple of months or so, I remember that being an awful time.

It's great you have a new consultant sorted out now, but how unfortunate for your surgeon to retire right now, especially without the hospital letting you know.

We found the Orabase/Vaseline mixture worked well for us too when she's sore. We use Metanium on normal days and add a layer of Orabase on top when she's sore. It's the same with our daughter, she can be absolutely fine and then within a few hours suddenly red raw, which can then be hard to get rid of.

It looks like you're quite lucky with the frequency of her poos. Our lo still poos 8-10 times a day and she's already 8 months post reversal, so you may find it will go down to an even better number of poos per day :)

Re: Movicol,

Our daughter now takes 1/2 sachet every other day. We just mix the Movicol with water, 30 mls in her case, and then add 90mls of Milk. That way she doesn't taste it and it's just like her normal bottle of Milk. I seem to remember our BM nurse telling us it's best if they take it all in one go in the morning, so that was the best solution for us. Might work well for you too.

We've just had another stint at hospital. We took her into the local hospital on Tuesday because she was breathing very rapidly and her body was showing all the signs of working hard with every breath. She was kept in with chest infection and put on Oxygen/Antibiotics. Then, as she seemed to be getting better she caught Norovirus at the hospital and started vomiting madly on Thursday night. Talk about being unlucky. Third time she's got some vomiting bug since the end of July. I dread the winter months already.... I hope she gets better soon and back to eating normally, so she can finally put on some much needed weight!

Hope everyone else is well and hear from you all soon
Krautmum
xx

Hi all, I am new to the board but so pleased to find other people that are going/have been through the same things and are still managing to be positive. I hope you don't mind if I give you a quick run down of our story and ask a few questions?

Our DS was born 13th Aug by c section and the peadatrition discovered the next day that he had inperforate anus. He was rushed from our local hospital to the JR in Oxford and had the stoma created on day 2 of life. It all seemed to happen so quickly. I had a horrible labour as had been induced and hemorraged loads afterwards. They wouldn't let me transfer with baby as I had to have blood transfusions. My poor hubby had to go through the operation on his own and I wasn't able to join him until day 4. We quickly found out that ds had problems with his kidneys and bladder aswell and went back to theatre on day 9 for a suprapubic cathater to be fitted. We were able to come home on day 11 but were left very overwhelmed having to work with the stoma bags and cathater bags. To make things worse about a week later I started to feel really ill and had to go back into hospital for an operation as they had left some of my placenta in.

Luckily the cathater has been taken out for now but we had a hiccup as he got a urine infection (we think due to the stoma bags leaking over the cathater site) and had to go back to hospital for 4 days). DS also got an abcess right where the bags were meant to stick. They drained and then cauterised it and we seem to be back to the normal once a day changes (we were changing 8 times a day when they wouldn't stick!). We just had to use a different make of bag for a while and use a duoderm dressing over the abcess area then stick the bags on top.

Our LO is now 12 weeks old and is scheduled for the PSARP surgery on 1st December. TBH ever since we got the date I have fallen to pieces. I know he is a strong little man and will be fine with the operation but I am really worried about the dialations afterwards as these haven't really been explained to us. Can anyone please let me know how often they had to do it? I have read lots of different things. Is there anything you can suggest to make it less painful/traumatic for them and you?

Also, I have a quick question about the reversal for anyone who has got that far. Is the output post reversal similar to what goes into the bag or does it change anyway as they grow and begin weaning? We have to empty the bag quite a lot so I was wondering if this will give us an indication of how much and when he will go when the reversal has happened.

Still finding everything a bit overwhelming but as I said before, so glad I have found some people who share the same experience. I think the hardest thing is knowing that he is so happy and content now and worrying that all of the things that are coming up might change that.

Thanks xx

Hi Cosmic

Just wanted to say a quick hello as haven't had a chance to reply to your post but will do so tomorrow.

Sorry to hear you have had such a tough time - those first few months are such a rollercoaster.

Rach x

Hi Cosmicdonut and welcome,

I've posted a message last week but it has miraculously disappeared... So here I go again, albeit a bit shorter.

First of all, I'm sorry to hear you've had such a rough time. It's hard enough finding out your baby has all these problems without being so unwell yourself. I hope you're feeling much better and getting on top of things with the stoma.

Our daughter is 19 months now. She was also born with anorectal malformation and had a stoma from day 1 until she was 11 months old, her PSARP was done at around 5 1/2 months. The time post reversal was probably the worst we have gone through, but she is generally much better now and quite happy when it comes to pooing (unless she is sore like at the moment...) She poos about 8-10 times a day, which is slightly better than at the very beginning but has remained roughly the same since about 3 months after the reversal. With regards to your question, I don't think you can really deduce from the amount of poo coming out of the stoma, how much they will poo post reversal. In our case I seem to remember there was a lot more poo with the stoma than there is now, but I can only speak from our own experience.

With regards to the dilatations, it looks like every surgeon has a slightly different approach. In our case, we never had to do any dilatations at home, they were all done under general anaesthetics at the hospital (apart from one where the registrar thought her bottom might be getting smaller and did one while she was awake). Our surgeon doesn't believe in the constant dilatations, so our daughter has only had about 3 and her anus is quite small compared to what some other kids have been dilated too.

Are you sure you will have to do them yourself? I know quite a few of the other parents on here have had to do them, so they might be able to offer some tips.

Is your little boy's bladder ok now? And what is wrong with his kidneys?

Our daughter was also born with a VSD and a multicystic kidney and also has gastro-oesophageal reflux, so we've been kept busy with appointments all round. Despite all of that though, she's generally a happy little girl.

All the best to you and try and stay positive.

Any questions just ask
Krautmum
xxx

Hi cosmicdonut

My DD was also born with IA. She's now 4. She actually had vestibular anus (no bottom hole but a small fistula tucked nexted to her vagina). I just read your post and it really did take me back. I just want to send you a huge hug and promise you that it WILL GET EASIER and you WILL GET THROUGH it and what's more you will feel so proud of yourself and of him. It is such a shock when your baby is born with these extra needs and you are thrust into all this, not least on the back of problems that you have had. I now a good hand full of children who have had similar birth defects who are older now. They are all such strong, proud, happy children have normal lives. The only advice I can give you is try very hard to stay positive. Try not to dwell on how hard it has been. Look after yourself, be kind to yourself and take every day as it come. I wasted so many precious days worrying about dialtions, worrying about operations. The worry was far worse than the actual event. I still worry now sometimes when things seem a 'bit funny' down there, but I limit it, get my info and decide on a course of action. Allow people in your life, friends, family, medical professionals that you trust to support you through it. Make sure you get that support if you aren't already. You will be eligiable for disability living allowence and even that money can help reduce stress.

Dialations - We did these every day for months and months and months. It became normal. I got so worked up about having to do it, but it was a few seconds every day and I just reminded myself that it was nursing procedure and was an essential part of her care.

Colostomy - Ask for Holister bags (more expensive for NHS so not always offered unless you are stuggling). Changing to those changed our stoma care from a nightmare into a breeze. If your baby is a sound sleeper like DD was, try changing it at night time with him asleep on your lap.

I know it wont feel like this at the moment, but it will soon seem like a dim and distant memory. You (and other parents) will marvel at your strength. These babies are sent to us for a reason. They teach us so much and what they give back to us in love and perspective pays for these stressful days a thousandfold. x x x x

Hi everyone

I have kindly directed to this board by Rachel HRD - I wish I had found it years ago! My dd is 3 and was born with imperforated anus and cloaca, she had stoma at 3 days old and this was eventually reversed at 15 months. Since then we have had huge problems with control and constipation, at one point her entire bowel was impacted! We have done the peristeen washout system and she recently had an ACE procedure - which is proving much trickier than we thought.

Sorry to post and go, but dd is up with a cold (will be a long sleepless night) so will have to read through the whole thread tomorrow.

Hi again all, thanks for the welcome and support, it is much needed and appreciated at the moment!

Krautmum - we will have to do the dialations at home ourselves unfortunately. We are just trying to figure out where and when we will do them and I am hoping it won't be as bad as we have imagined it. I am trying not to worry until the surgeon shows us how.

With regards to his bladder and kidneys, we are still a bit in the dark. We think one kidney is slightly enlarged and the other is a duplex kidney. The bladder doesn't appear to be emptying properly and because it is enlarged, is causing reflux to the kidneys (although you would never know anything is wrong the amount of times myself and my husband have been pee'd on when changing his nappy!) We are still waiting for a renal DMSA (radioactive dye and a scan) to show kidney function. The first time we were booked for it, they tried his feet, hands and arms but couldn't get a vein to get the dye in so we were rescheduled for a month later. The second time they got some of the dye in but then his vein collapsed and when they did the scan it didn't show up enough of what they needed to see. Not quite sure what they want to do with his waterworks but am seeing his urology consultant soon so will hopefully get some answers. Its all part of this VATER/VACTERAL thing. From what I have read, it appears that we have been quite lucky that his heart and oesophagus are okay.

Ilovehugs - your message is really encouraging, thank you. It really is good to know that people are coming out the other side of this both positive and with some sense of normality. We did use Hollister bags for a while when we had problems with the abcess but have gone back to Pelican bags now as I can change these a little easier on my own if needed. The only trouble is our DS has recently discovered that the bags make a similar crunching noise to the toys on his playmat and he seems to enjoy scrunching it with his hands. His constant rolling and kicking also mean that the life of the bags is less, but I suppose that is to be expected!

Will keep everyone updated once we have been through the operation.

Take care all xxx