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!

I should explain: Hirschsprungs means our little guy was born with a section of paralysed bowel, and couldn't poo at all (we had to do rectal washouts to clear him out). He had his first op to remove a section of bowel at 6 weeks- after this he was going 20 times a day!

He has since had an ileostomy and we are waiting to have this reversed and presumably go though the mega pooing stage again!

ccheung,ds also has hd. How is your lo doing now..?

Anyone else had/has a stoma or hd and need a chat or advice..?

been there, done that but declined buying the tshirt

Hi
Never left a message before so hope this works. Was really reassured to see that lots of mums have left messages regarding imperforate anus! I only wished there had been some when our 3rd son was born with a high IA in June 2006. Amazing to read that all the problems we had with pouches, dilating and the reversal are being experienced by lots of other people (unfortunately!). I would certainly be happy to share experiences for another site on this subject but will also look into the extra special parents site.

The reason I am here now is to see if anyone has any advice for potty training my son. We have 2 other boys that were potty trained normally at 3 and 21/2. 3rd son is 3 and although we were advised to wait longer than normal (no one says how long that is!) he is so switched on in all other areas that I thought we'd give it a go in the summer hols. On day 3 now and doing v well with wees but doesn't seem aware that he is doing poo. Sorry to be graphic but we only discover the poos when he's being cleaned after a wee on potty ie they just stay between his bum cheeks! Don't know if he is pushing them out or they just get pushed out by poo behind them!! When in nappies you just get used to changing him more often than other babies. Anyone been through this stage yet?

Also big tip for constipation is Movicol. We were put on lactulose after our reversal and it was hopeless. About a year after our reversal op (at 11 months) he got so badly constipated that enemas etc didn't work and had to go into surgery to be cleared out - different child after that and was able to eat normally again and poo better. We didn't know he was in such a state as overflow poo (coming past the hard compacted poo) made us think he was going all the time! Anyway since then a sachet of Paediatric Movicol a day has him sorted. Ask to use that straight away if worried.

Also anyone experienced starting school recently with faecal incontinence. We're very worried about it and as he's a June baby will go at only just 4 years old. Hence trying potty training now to give us plenty of time to get an idea of what he can achieve.

Sorry if this is longwinded. Amazing how much you want to ask when you get going. Hope this thread hasn't finished completely......

Hello Olympiadia and welcome! I'm a member of ESP too but haven't been on there for ages, really should catch up with everybody!

I have no idea about potty training after IA but Cerys is coming up to 2 years old and both my older two were dry by then. Our consultant also said to wait 'longer' but we have no idea how long. She's not ready yet but I'm keen to see how we will handle it when she is ready. We bought a potty but she just puts her dollies in it and won't entertain sitting in it herself just yet... So, I'll watch with interest to see if anybody else has had some experience of this.

I've heard that children who are feacally incontinent (sp?) sometimes have to be statemented but I'm not sure if that's 'the norm' or not. I too am keen to see if this will affect Cerys or not...

Hope everybody is OK?

Thanks for reply PLP. Glad to know someone is out there!
Not sure what 'statemented' actually means. Does it mean that they qualify for extra help or just that it's something that needs to be formally noted as a potential problem/issue?

Another day of potty training done and really sweet to see how pleased he is with successful weeing and sad to see how unaware he is that he's done a poo. Keep hoping it will all come right but not so sure. Really want to go back to the consultant is Sept with a positive report rather than get a 'told you so' look at having tried potty training possibly too soon.

If I hear of any other advice or if we have a break through I'll post it here.

Hi, not posted on here before either, but my 14 month old has just come out of hospital with an ileostomy and will have to have the stoma for a few months.

CharlotteStomaBaby - did you ever get your website set up? Would be interested to check it out.

Hi there,

It's nice to hear from other parents with the same problem.

We have got a 6 week old daughter with anorectal malformation. She has a vestibular fistula and had her stoma fitted the very next day after she was born. She also has a hole in her heart, a multicystic dysplastic left kidney and suspected tethered cord.

we have been having similar problems with her stoma. first the bags kept leaking so we started to change them more often. her skin got quit sore just around the stoma so we were given some powder to put on, which seems to have healed it up. just as we thought we were getting there, the next time we changed her bag, she was bleeding from the side of her stoma. this has happened twice now. we suspect it's because we cut the hole in the bag too small and it's cutting into the side of her stoma???? we have now made the hole bigger and hope the next time we change it, it will be ok. also, her skin which is covered by the flange of the pouch is now getting quite red and pimply. has anybody got any tips for that problem? you feel you can't do much as you always have to stick a bag straight back on. It's horrible to think that you're doing something wrong and therefore causing your baby pain and distress. we're seeing the stoma nurse again on thursday, but any advice would be appreciated

I can't give baby advice but I did have a stoma myself for 9 months and there was definitely a sort of barrier lotion or cream that I put around the skin in case the output burnt the skin. I also didn't find that I had to put a new bag straight back on, was fine to bunch up some tissue over the end while I cleaned up and prepared. This was especially a relief if the skin had got irritated (I would sometimes hold a bag unstuck over the end for half an hour or so to give the skin a chance to air/dry out).

Another thing that really helped me was to wear something tight but stretchy over the bag when I was doing things that involved lots of movement, these pregnancy bands for under tops for example, kept the bag in place and reduced any aggravation. There might be something similar for babies as they can be so wiggly. Finally you might want to check laying the adhesive bit on a different body part (not instead) to make sure she isn't allergic to the adhesive.

Good luck, everyone has problems with leaking and rashes to start with, it sounds like you are coping really well.

Hi All, sorry I've missed any messages...

Olympiadia, how did the potty training go in the end? Cerys has done a few wees on the potty but isn't really interested enough for us to go for it properly - she's 2.8 and I really thought it would be worth trying, especially as her friends are all dry and she's much better able to communicate too...

Heartful, hope your baby is doing ok with the ileostomy?

krautmum, reading your post really took me back - Cerys also had a rectofestibular fistula (?) and despite being told her spine was fine, she now has scoliosis and funny feet so will have to have special shoes made. I guess it has developed into this so they couldn't have picked it up when she was tiny. Has anybody suggested you try egg white around the stoma? I've heard it's really good, also the lollipops were fantastic for us. We would often leave Cerys to lie and have a kick around without her bag on, in order to give her skin a bit of air, it was pretty easy to clean up if her stoma leaked... We had the same with the bleeding, apparently it doesn't hurt them at all but I was convinced Cerys was in pain often with it . Do they have any plans to operate on her heart or kidneys? Cerys had heart surgery in the end but is totally heart healthy now, I know how scary it all is so my heart goes out to you!

Hi Hippygalore! Always lovely to get an adults perspective on stoma's and how they feel as it's hard to work out when you have a new baby. I hope you're recovered well now?

Love to all, PLP xxx

Oh, forgot to say, yes I think that is what statemented means - perhaps a teachers assistant or something to help her keep clean if she does turn out to be feacally incontinent (sp?). I really don't know much about it to be honest so I'll feel my way and let you know if I find out anything of value...

For now, Cerys will start playschool in September, just 2 sessions a week, and they take children in nappies so it's a non-issue for them.

Hi,

thank you both for your messages and advice.

Her skin looks a tiny bit better again, although she now has this funny white skin on the side of her stoma. will show it to the stoma nurse today.

PLP, no I haven't heard of putting egg white on. Do you put that straight onto the skin or onto the skin barrier? We're using the LBF skin barrier at the moment, but have used hte "lollipop" stick originally. Which one do you think works better? With the LBF I'm never sure that the skin barrier is really thick enough.

Re: hole in the heart
For the moment our little one doesn't need surgery. The hole is quite small for now and she does not have any symptoms of heart failure. We will have to go back for regular Echograms to make sure the situation does not change. Hopefully it will close up on its own.

The kidney does not need operating on for now. the cystic kidney should hopefully shrink over the next 2 years and not cause any problems.

She also had an MRI done on her spine to investigate further with regards to a possible tethered cord. We're still waiting for a definitive answer on that and feel this is the bit we know the least about in terms of how exactly it may affect her in future. All we know is that she may need an operation if she really has a tethered cord. What was Cerys's diagnosis after she was first born? Did they notice anything on her spine? I don't know what scoliosis is, is this related to the anorectal malformation? I'm sorry to hear there is sth wrong with her feet, can they operate on that over time?

Look forward to hearing from you again
x

Hiya Krautmum, yes I do remember there being white bits around the stoma itself, I was convinced they were from the bag rubbing and that was what was hurting her. What did the stoma nurse say? IIRC, it wasn't anything of concern...

That's good that you won't have to go through surgery, what a relief!

Cerys was diagnosed with the imperforate anus, then they ran the tests on her heart/spine/kidneys etc due to the VACTERL connections. She had a PDA ligation on her heart and had multiple VSD's, all the holes have closed over now which is good as a couple of them were 'quite large' according to the consultant! She was on antibiotics for six months just incase her kidneys did decide to reflux but everything was fine. When they checked her spine, they did both x-rays and scans and at the time it was fine, however her coxyx does seem to be rather long, almost like a tail.

She struggled to walk, eventually getting there are 21months, which was great, but then she couldn't go up and down steps independently until very recently. The scoliosis is where the spine is bent, in her case it's bent twice so it's like an 'S' shape. Her feet turn in, I'm not sure if that is caused by the scoliosis or the other way around, but the consultant has referred her and she is on the waiting list to see orthotics. From what I understand, the shoes will correct all of this (I think!?).

She also happens to have hypermobility which is worse in her left leg but somehow she battles through and overcomes all of it - she's an inspiration to say the least!!!

Thinking of you and hope to hear how you got on with the stoma nurse. I must say I forgot how great it is to chat with people who are going through similar stuff, not that I'd wish it on anybody of course!

PLP

Hi PLP,

Saw the stoma nurse and we changed her bag together. She said it doesn't look too bad overall but there is a thing called a granuloma on her stoma, a bit where it bleeds, probably from rubbing. We will have leave a bit more space around that area so it can heal up. Otherwise it looks ok I slowly feel a bit more on top of it as we have encountered a few different problems now and I feel we know how to deal with each one of them, which makes me feel better. Let's hope nothing else crops up.

It sounds like your little one has quite a few problems herself, but it's amazing that her heart is all healthy now after all that. It must have been horrible to find out about the scoliosis after everything seemingly being ok with her spine. I keep worrying that there is something else wrong with her. We have come to terms with the things she has been diagnosed with, but you wonder if you can cope with another thing. I suppose you always do in the end.

Reading about all the problems you guys are having with their bottoms after the operation makes me realise that the stoma will probably be the least of our worries in the long run. How long did it take for the new opening to heal up and does it bleed very often? It all sounds so painful, I really feel for them. I hope it all goes well for you when the time comes for potty training etc.

It's lovely to be able to chat to someone who actually knows first hand what we're going through. Let's face it, most people just tell you "I'm sure it will all be fine in the end", but they just don't know what is involved and how difficult it is to live with the uncertainty of what their lives will turn out to be like. speak to you soon
krautmum x

Hi PLP,

Long time no hear.

How is your little on getting on? Our daughter is due for her Ano-rectoplasty next Tuesday, which is great on the one hand but also worrying as she is having an op.

She has had a prolapsed stoma for the last four weeks, which they will be sorting out at the same time, so that's something to look forward to as well, as it's been rather difficult to change the bags and especially to keep them from leaking!

Hope to hear from you some time soon. It would be nice to hear a bit more about what it was like after the reconstructive surgery but in particular what it was like after the stoma reversal.

Hope all is well with you
x

Hiya Krautmum!

So sorry I didn't see this before - I imagine you're at the hospital, or at least preparing for the stay right now? I do hope it goes well, bless you!!

Right, after the reversal... At the time I did a summary of what happened while it was fresh in my head, I've copied and pasted it for you:

Well, we got home yesterday afternoon and as usual, Cerys has amazed the doctors with her rapid recovery!! It went like this:

" Tuesday: Arrived on the ward, NG tube inserted and fluids given to flush her out. Lots of crying, not much sleeping, two bed moves to get into a quieter room - got one in the end after having a heated discussion with the nurse about whether Cerys not having had her immunisations was my 'parental choice' or not (long story!). Her bag only split twice which I was quite relieved about - phew!
Wednesday: Cerys was much better in the morning and didn't seem to be complaining as much about being starved but obviously wasn't her usual happy self. Surgery was in the afternoon and apparently went well. After surgery she slept lots but woke up by the evening time. Within hours she was farting - amazing!!!!! Much later in the evening she had her first dirty nappy (yes, I took photos!!). She was of course hitched up to the drip for fluids. She didn't sleep too well but that was to be expected.
Thursday: She cried all morning and was not happy at all (again, to be expected) really awful morning. Thing is, I hadn't realised that she would have to be starved for 48 hours AFTER the operation too. I understand now the reasons but was taken aback at the time. She was allowed some water later in the morning but it took a few attempts for her to take it. Late in the afternoon she was disconnected from her drip so we could sort out the kinking (but the nurse disappeared) so I took the opportunity to give Cerys a little walk around the ward. I spotted her consultant and cornered him telling him that we'd had dirty nappies and she had kept down her water. He was amazed at how well she looked and agreed to let her have a couple of ounces of milk then and once before bed but not through the night - I skipped all the way back to our room!!! She took the milk OK and was so much happier for it - it enabled her to finally sleep too of course!
Friday: Cerys was put on 'free fluids' and was sooo much happier. She developed a rattly chest but apparently thats normal after a general (?). She's still chesty but not as bad. By the evening, we were told she could come home on Saturday - yay!!! Also, her canular came off and she was unattached. I suddenly worried about her bowel leaking into her body but was told that if it happens she will get very ill very quickly and that we would know instantly. They said it can happen anything up to a week afterwards Her consultant (Mr Griffiths) was very impressed with how quickly she recovered and she was very popular on the ward too, I'm so proud of my little Princess!

So, we got home yesterday afternoon and so far her bottom is not too bad but I can see its going to get worse, especially where the bum cheeks meet. They gave us metanium and so far its holding up. We're getting what seems more like proper poo now and its nearly in every nappy. Her wound is open where they've stitched up the muscle wall but left her skin to grow back itself. It seems strange sticking the dressing over it when I was having to do the bag before!! Its almost like I'm being weaned off lol! We're still dilating and we've moved up to a size 15 now.

As far as my feelings go, I still feel a bit numb to be honest but on the whole I feel like the drama is all over and we can get on with 'normal' life now (well, as normal as possible in our family!). Funnily enough, Cerys seems to be happier than ever now, its almost like she knows that she is fixed!? When I look back, I don't know how we've got through the last six months but we've done it somehow! "

It has brought a tear to my eye reading this as I haven't revisited it for a while - quite cathartic to be honest! This was back in Feb 2008 and you'll be pleased to know you can hardly see her scar from the stoma!

I'm still uncertain about the future - she likes having her nappy off in this warm weather but is constantly having accidents and is nowhere near ready to potty train yet, in fact she hasn't managed to get a wee or a poo in the potty yet. We are seeing Orthotics on Thursday as she has got scoliosis and has funny feet so she will need special shoes. She starts playschool in September and while I know she'll be fine, part if me is anxious about it... Hey ho, she still seems as happy as ever which is what counts of course!

Wow, sorry, didn't mean to write such an epic post! Will be thinking of you tomorrow xxxx

Hi PLP,

Nice to hear from you! We are home again for a few days. Went in on Tuesday for our daughter's op, but because she has another chest infection they couldn't to her ano-rectoplasty, which is very disappointing. They kept is in over night to do a contrast fluid x-ray for her reflux, as this seems to be causing her to cough all the time and may be a reason for her chest infections. She's on 3 different medicines for her reflux now, which in itself is a nightmare to keep on top of.

She has had a prolapsed stoma for the last 6 weeks or so now and the surgeon is getting rather anxious about it. He wants us to come back on Monday to sort out the stoma, so she will need a short GA after all. I'm quite worried about her having an op so soon after having the chest infection, but he seems to think the stoma really needs to be fixed now, so there's no choice. The ano-rectoplasty is now not happening until August, as she needs to be really well for that. I think we better get used to the fact that nothing will quite go according to plan. We already got used to her prolapsed stoma, which has been a lot more difficult to deal with, so I'm sure we'll deal with everything else as well.

It was really good to hear about her stoma reversal op. It sounds like the "Starving" is the worst bit. Although it's all quite scary, I'd rather be prepared for what's to come. Did you get on ok with the Metanium cream for the nappy rash I read somewhere about a cream from America that's supposed to be very good, but can;t find it again. Do you know that one?

I'm glad to hear Cerys is happy and getting on well, although it must be difficult having to deal with the scoliosis and her "funny" feet on top of everything else. How are her bowel movements? Does she have regular poos and is dry in between or does it sort of leak out constantly? Sorry for all the questions, but it's so good to talk to someone who has done it all and has come out the other end.

Our daughter has also been diagnosed with "mild" scoliosis, which we hope won't give her any trouble, but I suppose we will have to wait and see until she is older. For now she is getting on well and although only 3 months, has already started to turn over onto her tummy, which has already lead to a very pooy accident!

Look forward to hearing from you again
Krautmum xxx

Oh dear Krautmum, you really are going through it, bless you . How did the ga go then? Cerys suffered from constant chest infections up until these last few months too, not sure why . She also had awful reflux too, which slowed down the process of her putting on weight in addition to all the starvation etc.

So, the stoma is being fixed for now, then the big op in August? Well, I suppose it's not long to wait, although I remember all too well that while dreading it, I was willing time to pass quickly so we could get it over and done with!

Re nappy creams: I swear by metanium, it really is brilliant and we still use it regularly. I've not heard of this American one though?

Thanks, yes Cerys is doing really well - we saw orthotics and they've given her insoles to try for now - she doesn't seem to like them so we're encouraging her to keep her shoes on at every given moment. We're seeing them in a few months to check on progress. Glad to hear your lo is already developing well - I can imagine how the rolling over would have been messy! Cerys took her time with physical development - she crawled by her first year (well, mostly bum shuffled), and walked by 21 months. It's hard to tell if it was her hypermobility that slowed her down, or any of her other problems, or if she's just a bit slower than most. My older two were walking before they were 1 so it was very different, but then they are all different I guess lol!

As far as her bowel movements go, ask away - we're used to things centering around poo in this house lol! Cerys has suffered quite badly with constipation, we started off with lactulose, which didn't really do much to be honest. Then a few months ago, her paediatrician prescribed movicol which works a treat! He suggested she have it twice a day, but that turned out to be too much , so she has it once a day now. We put it into her bottle at bedtime so heaven knows how we'll get it into her when she no longer has a bottle! When she is 'loose', she does tend to leak from time to time, which means she is often smelly. It's a balancing game that can be difficult really - the consultant said she must not ever go more than 48 hours without a poo, for the rest of her life. I've often had to give her suppositories, for example if she hasn't drunk her bottle or something. It takes a while to learn the signals but we're getting there...

I'd best get some sleep I suppose. Hope your lo is OK, and don't forget to look after yourself too - all of this is exhausting for you and you must make sure you give yourself some time to relax somewhere along the line. I wish I had done it for myself!!

PLP xxx

Hi PLP,

Nice to hear from you. The stoma revision last Monday went well, although the stoma prolapsed a little again shortly after the op, but they managed to put it back in and we could leave on Thursday. So glad the GA is over and lo didn't develop any respiratory problems.

Yes, although scary, can't wait for the op as it moves us closer to normality. However, listening to you makes me realise that a lot of the problems lie ahead of us and are there for the rest of her life, which is slowly sinking in. I suppose you get used to those as well. It really does sound like it's trial and error all the way in trying to keep on top of constipation vs loose poo. Glad to hear you have it more or less under control. I shall get some Metanium cream

By the way, did you start weaning Cerys as normal at 6 months? Did they tell you yo give her a special diet or was that all normal? As our daughters op is now so late, we will have to wean her before the reversal by the looks of it. Not sure if this will make it more painful for her when she first poos through her new bottom or not...

I hope the insoles help her feet sorting themselves out. Our older one didn't walk till 17 months either and now has one foot turned in funny and stumbles all the time, so I suppose this sort if thing can happen anyway, but you'll never know what exactly is the cause.

You're right, I should try and look after myself a bit. As you say, you just get one with it and don;t realise what it's doing to your own health. Will try to fit in some me-time if I get a chance

Hope to hear how you're getting on soon
Krautmum xx

sugarbea - post here - I'm sure PLP and krautmum will pop in at some point.

Thank you cleverlyconcealed, I'm sure she will be along soon - you're a star!!

krautmum, yes it really is trial and error and we still muddle along and juggle things around as we go. I would be lying if I said I was 'used to it' now but I've certainly accepted it, which I never thought I could when first faced with it.

As far as weaning goes, I think we had a few set backs with Cerys due to being in and out of hospital and all the starvation. But we got there in the end - when I had DS and DD1, the recommendation was 4 months (heaven knows why it's 6 months now but I guess that's a whole other discussion!). I decided to go with whatever felt best for Cerys and will admit I struggled to remember how I did it with DS and DD1 lol! They told me to give her a normal diet but stressed the three F's - Fruit, Fibre and Fluids. So, she lives on those really! Unfortunately, she doesn't really drink as much as I'd like her to but the good thing is that she will try anything and likes water too. She loves pasta but that tends to bung her up, so we only give it to her every now and then.

The first poo: I'll be honest - I took photos !!!!! Yes, I know it's gross, and I promise I haven't sent them to anybody but it was truly a milestone for us as a family. It really isn't painful at all, because (sorry if tmi) it really is very watery, especially if you think that they have been starved for so long beforehand. After that, we dilated Cerys twice a day for a few months, then it went down to once a day; every other day; once a week etc. etc.

Yes, please do look after yourself - I ended up on antidepressants and was in quite a state. People would say 'oh, you're so strong, I wouldn't be able to cope if I were you' and I would reply 'actually I'm not strong, and I'm not coping at all!'. My GP was brilliant and kept a close eye on me...

Gotta dash now as Cerys is stirring - she usually sleeps really well but has had a temperature and I think she may have a virus. Again, she hasn't been eating so we've had to make sure that she keeps 'going' properly, I may have to give her a suppository in the morning if she hasn't done a poo as it's almost 48 hours since her last, despite having had movicol . Yet, another example of the juggling but I wouldn't change her for the world!

xx PLP xx

i'm almost crying with relief that I am not the only mum going through this....my daughters surgeon has actually written a paper on the condition, but without a medical degree, even with the best intentions it's not much help.......It all seems about statistics and percentages (not helpful if your baby is born with a condition that is 1 in 5000...lol we beat statistics every time)

my daughter was born with IA but not given a stoma..she had her prsap at 2 months and at all her IUAs the surgeons were really confident that she was doing well...she has movicol every 2 days but has quite normal bowel movements...at the last IUA in june they found another small fistula....this time anovaginal...some poo (a very small amount) is sometimes found in that region....the surgeon is confident its just a set back and she should develop continence and live a normal lifestyle.

The problem i'm having is more with acceptance than health...It just seems like everything that happens to her happens for no reason (hence why statistics mean nothing to me).....

on a brighter note the pfo in her heart has closed and the vsd has shrunk from 6 to 2mm within 7 months..

dealing with her condition now is easy compared to worrying about the future...i just want her to be happy, and the not knowing how she will deal with her condition is killing me.....i have heard a bit from adults born with the condition, some suffering still and one lady that had no effects what so ever...

what a relief to find other mums like me.

Tis me Saggar PLP. Glad to be of service.

thankyou cleverlyconcealed x

Saggar!!!! Hope you're well?

sugarbea, I feel your frustration having spent hours trying to make sense of all the medical reports on the internet, still not really gaining any knowledge as to how it would affect MY dear little bundle! There are so many more of us on Extra Special Parents, I can't recommend it strongly enough!

Glad to hear your lo's heart is on the mend - Cerys had multiple vsd's that were 'medium' in size, but by the time she was a year old, they had closed up completely which was amazing! She also had a pda ligotomy (sp?) so she is 'fixed' as such now... So, is your little one a 'vacterl' baby then?

Like you say, all of this aside, accepting it seems like such a mountain to climb - I'm climbing it with you! I still worry that Cerys may have to be statemented when she starts school if she is 'faecally incontinent', or that she may have to have one of those 'mace' things in her belly button (lots of details on ESP). What if she has to wear nappies the rest of her life and all the other kids will make fun of her because she smells? What if..... So many questions, and in the meantime a gorgeous, funny, brilliant little girl is looking at me with such beautiful eyes. I want so much for her, but what if this 'malformation' prevents the best for her?

Keep posting sugarbea, we can all hold each others hands through this and talk about poo etc - the saying 'you don't know until you've been through it' couldn't be more true!

Cerys has had a high temperature for the past couple of nights, so I'm up late to check on her - thankfully it's staying low for now so I'm off to get some sleep...

Take care xxx