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!

hi krautmum know the feeling they do less poo you dont know weather to be happy or freaked hope it is ok hun
i was back in hospital today for check up they very happy with his weight gain and they were gonna change his feed on Peptijunior because he a bit puckey but i think he just needs thickener as he had thickener in hospital and he never got sick. So they gonna try thickener first was afraid to change in case it made him constipated. I was also worried as he gags at even a tiny lump and he 7mths they said he might have problem with that as he was being fed though drip for such a long time and very normal for that so feel batter. I just wanted to be able to give him food in hands for when we eating. Was also worried about holiday in france if he doesnt poo so they told me to get lactolose and give him2.5mils 4 times a day
rainbow know the feeling about it being so close to loosing our lil ones it is pretty amazing the way kids can get so sick so quick and the same about recovery
MRSSIMON how is jack really hope you are catching a break hun
plp and rachel how you doing

Hi everyone

Nice to hear from you again Sammy, glad Lucas is doing so well. Must be lovely to have him home. DS1 can't have cows milk at all so we use 'Pure' Soya or Olive spread instead of butter & things like hummus on toast instead of cream cheese. You can use the spread to bake with & make mash etc. It's on special offer sometimes in Tesco, you can get 2 packs for £1.50. If he's lactose intolerant rather than allergic to dairy you can buy all the Lactofree products. They do milk, cheese, cream cheese, yoghurts etc. The 'free from' aisle in the supermarket will have loads of dairy free stuff too but ordinary rice cakes & breadsticks don't usually contain dairy.

Rainbow, you tried. I feel like I let DS2 down during similar circumstances but when you are repeatedly told that everything is fine you start to think you are being silly and over protective. You're not a doctor so you couldn't have known how poorly your LO was. Don't torture yourself.

MrsSimon, we are at central manchester too. I'm not under Mr Morabito but he assisted on DS2's pull through operation. My sister is a paediatrician and she was telling me that he's quite a famous surgeon. Don't know if that makes you feel any better or not but I find it reassuring that DS is being looked after by a good team. Our consultant is Mr Khalil.

I have to mention that we started using some new bags about 6 weeks ago & they've been amazing. They're made by Salts and they're really flexible which has helped loads with leaks, especially now he's sitting up & moving around more. The code is NDS13 if anyone wants to try.

We've got a date for the reversal, it'll be 14th June. Just 3 weeks away. I'm dreading it in a way but we need to get it over with so it's a good thing. We've been in & out of hospital a bit with this bug from Italy lingering but we've been given Metronidazole to take until the op sothat should keep him well.

We started weaning a week ago. He was nearly 7 months so a bit late but the tummy bug has put us back. Has anyone got any advice on weaning with a stoma? He has point blank refused to be spoon fed so we've had to go straight onto finger foods.

Hope everyone is doing ok

Love to all

xx

Hi all,

Sammy, great to hear that Lucas is getting on well so far. I hope it continues. I'm sure he's eating will improve too, he just needs to get used to it. I remember our lo choking on lumpy food after one of her tummy bugs and we had to go back to smoother food for a little and then back to lumpy. It takes them quite a while to get used to the lumps anyway, so I wouldn't worry at this stage. As long as he eats that's the main thing.

hairymelons, good to hear you've got a date for the reversal. It's nice to be rid of the bags even if the pooing afterwards is a constant worry. Re; weaning with stoma, we were told to give our daughter a completely normal diet and we never had any problems with it. Just meant the poo was getting thicker and a bit more difficult to get out of the bag. We always joked it was a bit like having one of those cake decoration thingies that you squeeze :)

We're still a bit worried about our little one doing mostly small poos now and only very few big ones. Have spoken to the BM nurse today about it and she will talk to surgeon in case he thinks she should have another x-ray. She seems happy and all but you just don't know if enough is coming out...
On top of that we found out yesterday that she will probably need heart surgery to close her VSD after all. The blood flow in her lungs has increased a little and I think some pressure too and with her constant infections, the consultant thinks it would be wise to close the hole. will have to wait for final confirmation in the next month but looks like it is very likely to happen. Scared about that already but not much we can do. Will let you know how it goes.

Hope everyone else is fine
Krautmum xx

hairymelon thanks hun lucas is doing well cant believe his bum is still great and he poo's a lot more now normally 3 really large ones have to change his clothes cause its an explosion. Now you have a date for reversal i would put some poo out of bag onto bum every day to get it used to it worked fab on lucas worth a try.On weaning we were feeding lucas from 4mths in hosp and they told us not to give green veg and too much sugar as this causes too much output. But other than that he had chicken potatoe and carrots ect . Lucas is Lactose intollerent will check shops didnt realise they had a lactose section thanks for advice xxx
hi krautmum you lil one really isnt getting a break hopefully you get good news for a change. It is so stressful watching if they poo or not my nerves do by gone Had to bring lucas to doc chest infection only home 4 weeks and 2nd anti-biotic already. But he is so good humoured thank god that helps
hope all are doing well xxx

Sorry you have to face another surgery Krautmum Not what you need after the last few months you've had, you all deserve a break.

Blockages are what scare me most, I'm not surprised you're worried about what's coming out. I'll probably be in a&e once a week asking for an x-ray...

DS's poo isn't getting any thicker which is worrying me a bit too. Before this last tummy bug it went thicker and brown within a couple of days of starting food (soz, TMI) but hasn't got back to that since this last tummy bug. We have been giving him quite a bit of fruit & veg, is that a bad thing with the stoma then?

Sammy, how did you find out Lucas was lactose intolerant? And which formula does he have? DS has been having formula whilst I'm at work & I'm sure he's reacting to it. His big bro can't have dairy so I wouldn't be surprised if he couldn't either. I started the poo on bum thing a while back, then stopped but I'll start again if you reckon it'll help.

Thanks both, it's so helpful having people to talk to about all this :)

Hope all well xx

hairymelon hi the veg is fine its the green veg makes them poo too much and anything that you would normally have to help poo. Its not that its a bad thing its just when they have the bag they dont want too much output. The poo changes colour according to what you give it try different like carrots.When ever lucas caught a bug in hospital his poo was watery and stayed that way for a couple of weeks takes ages to fully go out of there system. Hope that helps.
Lucas had blood in his poo when born and they said its from the sugar in milk not broke down enough. In lactose free milk its broken down for them so easier to digest also most of the mums i met with stoma babies were put on lactose free easier on the bowel to digest and poo. Lucas was on netraprem now he is on Peptijunior.
On the poo my god i was so stressed yesterday as he didnt poo was going to start him on lactalose today but woke up to the lovely smell of a vey distroyed in poo baby never was so happy lol Imagine delighted the room stank ha ha. Lucas has been sick again with chest infection ended up on really strong antibiotics hopefully itll work as im off to france next saturday. i give lucas loads veg now by the way and pureed fruit and havent needed to give medicine to help him poo yet. I would try putting poo out of bag onto bum my god i saw how bad babied were in hospital and lucas only got red def worth trying.
How are all of your lovely babies doing xxx

Hi Hairy,

Sometimes it takes a while for the tummy to settle again after a bug so it may just be a question of time, but if you're worried it's always best to spk to the stoma nurse. Straight after a tummy bug you should steer clear of acidic fruit and certain veg, but once they're better again they can have everything. Bread, bananas, rice are all good if you have the runs and supposedly carrots too. As I said before, we've never been told to give our daughter any special food with her colostomy, it's only now after the reversal that we need to be more careful not to give her too many constipating foods. If you haven't been told otherwise I would just give your lo a varied diet as you would with any other child.

Our girl is luckily pooing a bit more again since this morning, I hope it will last and they're is nothing bad happening in her gut.

all the best and spk soon
Kx

Thanks so much, both of you. It's so hard to know what to do for the best.

I'm gonna stop all dairy & gluten this week to see if they are bothering him- he's covered in eczema since we started weaning. I'll ask the GP about those formulas (do you get them on prescription sammy?) & I'll speak to the stoma nurse too.

Krautmum, glad the poo situation is better. Must be so hard never really knowing what's going on in her gut.

xx

Hello to all

Sorry to be quiet for a bit but we risked the insurance company refusing to cover anything to do with Jack's bottom and took him to Turkey for a week. Sunshine and grandparents - did him the world of good.

Hairymelons - glad to hear Mr Morabito is famous although maybe just for his Italian good looks!!! (my dh knows I'm writing this!!!) We had Mr Khalil for a while whilst Mr Morabito was away and he was lovely although Jack cried a lot every time he saw him. Great you have your reversal date although never good to be back on ward 79!!!

Krautmum I hope your dd is doing well. But very sorry to hear she might need another admission. Please let me know how she is getting on. Jack seems to have just got stuck doing small frequent uncomfortable poos about 15 times a day. We have given him lactulose twice when he has seemed to be really straining but it seems to make no difference. Today he has been really off his food (eaten practically nothing) and has been sick a bit. I am now of course paranoid following Sugarbea's experience. He's due back in for another dilation soon which I hate because he's so unhappy for about 5 days afterwards but am also pleased about as it is some contact with the surgeon. Orabase keeping bottom good though so that's one good thing.

Sammy am thrilled that Lucas's poos are big and smelly and that his bottom is holding up so well. What a big relief.

How awful that we are all so poo obsessed. We holidayed with grandparents and I think they have gone home desparate to have a meal without toilet talk!!!

Very best to all

MrsS xx

Hi all

MrsSimon so glad you were able to get away must have done you all the world of goos. Sorry to hear Jack is still struggling with his poos hope is starts to improve soon.

Sammy glad to hear Lucas is pooing well - you must be the only Mum relieved to have explosive poos!!

Krautmum Im sorry to hear that your DD may need to have her VSD closed. Ella had an ASD, VSD and narrowed valve but we were very lucky that they all rectified themselves. Keeping everything crossed that DD's VSD closes before the apt. If not I can understand how you must feel about surgery but just wanted to say I know a few people whose LO's have been through it and all coped really well.

Hairy glad to hear you have a date through for the reversal. Echo what the others say re weaning with a stoma - just offer him what you would normally - the output will become thicker although Ella's is still variable and lots of fruit etc might make it a bit more fluid.

Ella is doing OK although had a sickness bug week before last poor mite - she just goes from one thing to another. Finally managed to get her MMR done this week. We saw her urological surgical registrar a few weeks ago who was also her colorectal registrar (consultant rotations!) when she had her PSARP and she is really pleased with how her bottom and stoma looks and is pushing for her reversal to be scheduled - she had the PSARP last July and had the last check under GA in October so it really should have been done by now. I haven't chased it as she has been so poorly over winter but we move at the end of the month and once we are moved I will be chasing it up too!! She also needs some tests on her urinary system as with her misplaced urethra combined with her anorectal issues she is susceptible to kidney issues.

She is growing and developing well although had a tough few days bag wise this week - she had a leak which really upset the skin around the stoma and we ended up changing her bag 5 times on Friday poor mite as it wasn't sticking. Stuck her in the bath for ages that evening and kept putting on the Ostoseal and it seems to have calmed down now. Have never seen her so upset poor mite.

Hope you have all had a nice bank holiday weekend. Love to all the babies

R xx

World of 'good' that should be - goos, poos we're all obsessed!!! x

Hi all,

Nice to hear from everyone.

Mrs Simon, good to hear you managed to get away! I'm amazed you didn't get insurance. We've got insurance with "insureandgo" and they cover our lo for all of her health issues including VSD and multicystic kidney for just 60 quid extra for the year (europe only). I thought that was really good so check them out next time you go away. Talk about being poo obsessed. I've been keeping a food and poo diary for the last 2 weeks, as our daughter's output is so much less than before, so poo is all I think and talk about all day...

I'm sorry to hear Jack is still doing such frequent and small poos and still finds it uncomfortable. Has the last dilatation had any effect at all? I really hope things will improve for you soon, you must all be very fed up. I hope his not eating and being sick is nothing serious and he gets his appetite back soon.

Our daughter is doing anything between 6 and 10 poos a day, and some days they are all very small, other days she might have a few bigger ones, but there's no pattern to it at all. The surgeon is seeing us on Monday now, rather than mid July, which I'm very glad about. If the reason for her reduced output is her bottom getting smaller, they can at least do sth about it sooner rather than later. Just when you think things are improving, it changes again and you don't know what's going on. I will let you know what they said next wk. At least our daughter is happy, which is a big plus!

Rachel, thanks, I really do hope she might still get away without having the heart op, so let's keep our fingers crossed. I know these operations are very standard at GOSH, but I'm so much more scared of that one than any of the other ones... Sorry to hear Ella has been ill again, it's the same with us, one thing after another, you don't know where one infection ends and the other one starts. These tummy bugs are particularly nasty and really take it out of them.

What exactly is the problem with her urethra? When you say it's misplaced, is it just in a different place but working? That must all be an extra worry. I hope things go well on that front.

Hope to hear from you all soon
Kxx

Hi Krautmum

Ella's opening for her urethra is in the wrong position so it's close to being classified as a 'persistent cloaca' where the urethra, vagina and rectum fuse into a common channel. Her's isn't a true cloaca as it is possible she may not need surgery as it's within tolerable limits - but they will keep a very close eye on her as she grows and monitor her kidneys and urinary output as there is an increased chance of undetected issues which could lead to kidney scarring.

Are you familiar with VACTERL? It's a group of congenital abnormalities whereby if your child has 3 or more of them they can be classified as VACTERL. As Ella was born with anal, renal and cardiac anomalies I have always thought she is VACTERL although some Dr's don't necessarily recognise it. Your DD sounds as if she could also be a VACTERL baby with the same type of anomalies. Apologies if you are fully VACTERL aware I can't recall if it has ever been mentioned. I think PLP's daughter is also VACTERL.

Hope DD is doing well and all our LO's keep bug free.

Rach xx

Hi Rachel,

Yes, our daughter is also considered a VACTERL baby, at least by some doctors, as she had the anorectal malformation, the VSD and the multicystic kidney. I've read lots about it all when she was born and I'm familiar with the term "cloaca" as well. It sounds like Ella was lucky in that she may not need surgery and it isn't a true cloaca, which seems to be a very difficult form of malformation. I hope things go well with her urinary system. The cystic kidney was the only thing we knew about and therefore the only thing we worried about, now this seems to be the least of her worries... I hope it stays that way and doesn't develop into a problem as well!

All the best and spk to you soon
Kxxx

Hi everyone

Hope all are well. DS has been back in hospital with a tummy bug (his poo went white! Wierd.) but we're home now. Just hoping he's well enough for the op on Tuesday...

Bit scared tbh, we just don't know how his gut will cope because they took away 2/3 of his colon during his pull-through surgery. But I'm hoping he'll be ok. And we'll just have to get on with it whatever happens.

You lot are an inspiration, you all face so much uncertainty very bravely I think!

Will report back when we have our first pooey nappy!

xx

Hello ladies,

Oh krautmum, so sorry to hear your LO may be facing heart surgery, I remember all too well how scary that was! I have to say though, Cerys was so much better afterwards and they work wonders these days. I remember very clearly that they told me Cerys has a piece of titanium in her heart from where they repaired her PDA, I asked if it will set off the metal detectors at the airport which took the doctors by surprise! It won't, but it's funny what crosses your mind when things like that are going on! Do let us know how you get on?

Hello to everybody else dealing with bags and poos, our house is obsessed with poo as usual. The suppositories have been an absolute nightmare! Now that Cerys is 3, she takes some convincing, and I've had to pin her down most times, with lots of tears. She calls it the 'sore thing' or the 'poo thing' as she knows it makes her poo. Sometimes it is very painful for her, I'm assuming that is because it makes her bowel spasm. The first 2 weeks of doing it every day were totally awful, we now do it every other day, I cut the suppository in half and try to hide it from her, but every time I change her nappy she asks if I'm doing it. I explain that it's every other day but she just doesn't get it bless her.

Melons, Cerys had her reversal at 6 months and will be 4 in September, I still remember it so clearly now though! As far as weaning goes, I think we had about 3 attempts in the end, but we got there! Each time we started, she had some sort of operation or setback, however it all worked out in the end and she has a very balanced diet, maybe a bit more fruit than most kids her age but good on the whole. She loves pasta but we avoid giving it too often as she tends to get bunged up. Also, she's only allowed 1 banana per day, even though she loves them too!

Krautmum, her feet are the same really, we are seeing the orthotics consultant on 23rd June. She gets full rate mobility now as she struggles to walk very far due to constantly compensating with her spine (scoliosis) and the hypermobility. We use the buggy lots although she tries to be independent, but then her legs can't do what she wants them to do. She's getting a bit big for the buggy recently so I'm considering asking about a wheelchair, we'll see though...

Yes, Cerys is a VACTERL baby, she ticks the boxes for anorectal malformation, cardiac and spine, although her spine was fine when she was little, I think the scoliosis has developed as she got older perhaps.

Well, I had best get on, housework to do! I have a cyst on my ovary and have been coping with the pain of that as well as my Mum being poorly, but we do what we have to as usual

Take care all xxxx

Hi PLP,

Nice to hear from you. I'm sorry to her you've been having a rough time with the suppositories. It must a difficult thing to do, knowing Cerys hates it so much, but in the end you know you have to and you just get on with it. How does she get on now? What has it done to her bowel movements and is she clean in between the suppositories? I hope it has made a positive difference for you all.

I'm sorry to hear she is still having all these problems with her feet and walking. Is this something they will operate on? I read the scoliosis can give people a lot of pain when they get older.

Re: wheelchair, have you seen those "buggies" that some people have? I just always see them in the hospital. They're for kids with disabilities, they look like a buggy but they are a bit bigger and sturdier. That might be a good in-between thing instead of getting a wheelchair.

We're still dealing with the same poo issues. Our daughter is still doing lots of small poos most of the time. We increased the Movicol for a few days which seems to have made a positive difference on a couple of days. We gave her a slightly smaller dose again yesterday and today she has again done lots of small poos and quite close together. There just doesn't seem to be a proper pattern, although I do think she might just have to take more of the Movicol until we may be able to regulate things a bit more through her diet. It's hard to get enough into her at the moment anyway (or so it seems) so she may not always have what's best for her bowel. Will spk to the B&M nurse again and see what she says.

And so the story continues...

On the positive side she has just started walking and is overall very happy, so I suppose we should be happy. Still waiting to hear more re: heart surgery but will let you know.

Enjoy the sun when it's out and spk soon
xxx

Hi Krautmum

Brilliant that your daughter is now walking, that is definately something to celebrate! Am sorry to read that her pooing hasn't settled down yet. It seems incredible that it should take so long.

We are in exactly the same position. It varies from day to day but Jack is still pooing small amounts about 20 times a day. He had a dilation about a week and a half ago and the good news was that despite having had no lactulose for a month he wasn't at all constipated. The bad thing as always is that for about 5 days following his dilation he was in tremendous discomfort and really horribly unhappy, not wanting to eat, not sleeping well, awful, awful, awful. As always throughout these last 3 plus months since his stoma reversal I really don't know what to do for the best.

At the moment we feel as if this might be as good as it gets but hope vainly that with more time Jack's pooing might become more 'normal'. Let me know what your BM nurse says, Krautmum, as we have no contact with ours.

Hairymelons hope all went ahead and went well on Tuesday and that you have survived the ward! Let us know how things are.

Hope everyone is well; this thread remains a constant source of encouragement.

MrsSimon xx

Hi Mrs Simon,

So nice to hear from you. It must be so disheartening that Jack's pooing doesn't seem to get any better. What size is his anus dilated to now? I must say, I am very surprised that he is on no lactulose/Movicol at all! I must admit that I am beginning to think that a higher dose of Movicol seems to improve things for our daughter. We gave her a full sachet every day for about 5 days and she did seem to do bigger poos and fewer poos at least on some days. Now that we have reduced the Movicol again she seems to do the bigger poos less frequently. I have been keeping a poo diary for a few weeks now, but her pooing seems so erratic without any pattern still that it's hard to see what makes her poo more or less. She's got yet another chest infection now, so is really off colour and off her food, so that always changes things as well.

Have you thought about giving Jack a good dose of Lactulose/Movicol for a while just to see if it makes any difference? It does seem to help us. If she has a really good day (rarely!) she might just do about 5 or 6 big soft poos, which is like heaven! Jack still being on 20 must be a complete nightmare for both of you. How come you don't have a BM nurse to speak to?? That seems mad. They are our first point of contact if we have problems and they then speak to the surgeon if necessary and get back to us. You must try and get hold of someone as you can't deal with it on your own and I assume you only see the surgeon every few months as we do.

We now had confirmation that our daughter will have her hole in the heart closed up in the next few weeks. We're just waiting for a date for surgery. I just really hope it will put an end to those constant colds/infections that make her so miserable at times as this would greatly improve all our lives.

Do let me know how you get on and don't despair just yet. I think it just takes a bit longer for some of the children but it doesn't mean they won't get better at some point. I really wish you all the best and hope to hear from you soon.

Lots of love
Krautmum xxx

hi all just back today from holiday in france and it went really well lucas is doing well but he seems to have become really hoarse and unsettled looks like i have to bring him back to doctor He just doesnt seem to have much of a immune system am giving him a herbal prebiotic sachet every day called Restore to try help but it takes a couple of wks to work and only 2nd wk on it really hope it helps. Home 6wks from hospital 4 anti-biotics already. On the poo my nerves go if he doesnt poo wonder do we ever settle. He is doing well poo only 2 times a day but every time he goes is everywhere and goes right though clothes destroyed right up to chest. Not complaining as once he poo im happy wonder how long this will last back friday to see surgeon really cant wait. Lucas has problems keeping food down have to use thickener "Thick and easy" in food and bottles to help keep it down and if he vomits im freaking in case its another blockage. He cant seem to take finger food at all gags and im finding that really hard as when we are eating we have to hide food cos he wants it. They said it is because he was tube fed for over 5mths and only drinking little amounts through bottles so tubes havent been working proparly this could last a very long time. Has anyone else had this problem would love some hints as am so nervous with him.
Sorry to be such a grump tonight but needed to get it off chest
plp just wondering do you have to use supositries cause my GI consultant said try at all costs not to use up bum always medicine through mouth sorry if that sounds silly if youve tried medicines already just thought ide tell you what he said to me sorry Really hope Cery improves soon xxx
krautmum sorry to hear your daughter needs heart surgery but hopefully you wont be waiting too long she is as im sure you know already in all our prayers xxx
mrssimon sounds like your having a really hard time too hope all settles soon xxx
Hairymelon hope all went well xxx
rachel how you doing hope i havent forgotten anyone hugs to all xxxx

Hi Sammy,

Great to hear you had a nice holiday. It's so good to get away. Also brilliant to hear that Lucas only poos twice a day, even if it must be difficult if it goes all over, especially when you're out! It sounds like his feeding will take a while to get to a "normal" state, but it's understandable, seeing as it's all really new to him. I hope he is making good progress soon. The antibiotics sound like a nightmare. Although our daughter is constantly ill she hasn't been on them very often, which is at least one thing. I think it's a good idea to give them the prebiotic once they have come off them to try and restore some of the good bacteria. Let's hope the constant infections will settle down soon.

We now have a date for our lo's heart surgery, end of August, but it may be earlier if there are cancellations etc. I just want to get it over and done with now that we know she needs to have it done.

Her pooing is still up and down. We have now come to the conclusion that she needs a whole sachet of Movicol a day, as otherwise she just seems to be doing about 9 or 10 tiny poos a day and very few substantial ones. With the increased Movicol at least the frequency seems to be more like 5 or 6 a day and she seems to manage to clear it all out, so think we'll stick to that for a while and see. We'll see the surgeon again mid July so I suppose they can then tell us if we need to do anything different.

Otherwise she is pretty happy, walking around all the time now and enjoying her new-found freedom :)

Hope everyone else is ok!
Spk soon
Kxxx

hi krautmum its good you have a date for surgery hope you get a cancellation the waiting is awful hun. Great that you seem to have found the right amount of Movical for your lo. Saying souds prayers for you all. how long will your lil one be in hospital for have they given you any idea.
Lucas was back with surgeon friday he was very impressed with how he doing thank god. He did tell me that he wasnt happy with the way Lucas scar is as its sinking in a lot and says that he would like to go back in when he older to staighten it and make it less indented. I told him it doesnt bother me as its cosmetic and after all he been through last of our worries, but he reminded me lucas has to live with it not us. So i told him ide think about it wont so it till a yr or 2 but thought of going through surgery when not a medical emergency like last 3 i just dont even wana think about it. He also told me that he really high risk of more blockages from adhesions as he had before so not what i wanted to hear we are nervous enough. I feel like im totally poo obsessed as thats all i talk about. And if he doesnt poo god my nerves i relive the past few months in seconds.
how are you all doing been quiet on here hope thats cause your all busy enjoying lovely weather and days out xxx

Hello everyone :)
Quickly read through everyones posts, I havent been on MN for ages but think of you all often.
Asia has been doing really well recently after her big emergency. Her GOSH consultant is happy with her progress but we have to continue dialatations daily eventually up to a 14. We are on 12 for the next 6 weeks then up to 13/14 for the three after. Ive reduced movicol to one sachet a day and have found now that her new anus is considerably bigger we are not getting any blockages nor is she getting constipated. I found before that she was doing lots of small poos and not actually finishing them. She is now doing 3 big poos in the day. It seemed that the size of the anus is what was causing the problem.
We also had good news from the hospital regarding her hip. No hip dyspasia thankgoodness after 7 weeks of calling the hospital for the x ray result.
She is also using a potty to wee when we are at home. She only ever seems to poo at playgroup or at night so we've not quite caught the poos yet but she does wake up at night saying "get out poo" so shes aware shes done it lol.

Sammy Im so happy you finally have your baby home :)

Krautmum sorry to hear about dds vsd. Asia has one too but seemed as if it was closing on the last app. Did I read she was having it done at GOSH?

Mrs Simon did they say what they will dialate Jack up too. If his muscles are strong they may be tightening quicker than most and might need more dialating like Asia did.

Hairymelons hope los surgery went well xx

Rachel Hope Ella is doing well xx

PLP poor you having to cope with being ill on top of everything else. Id cerys at nursery? how do they deal with it.

Hi to everyone else too hope all your Los are doing well.

There was one thing I wanted to ask. Are your Los poos a funny colour. ?Asias has been kind of green since she was born. our old consultant questioned liver function but the one at gosh doesnt seem to think its a problem as she is otherwise well.

Hi Sugarbea,

Nice to hear you daughter is doing so well and only doing 3 poos a day! That must be great. Can't believe you still have to do dilatations every day. Are surgeon only does them under GA. Our daughter only had an 8mm anus when her colostomy was closed, so far smaller than other babies, which may well contribute to her pooing habits. Will see the surgeon soon so will check with him again as to what his plan is dilatation-wise.

Yes, our lo's heart surgery will be at GOSH. They were hoping her VSD would close as well, as there was a bit of tissue to the side of it from the start, but unfortunately it hasn't changed at all and there is just too much blood flowing round her lungs etc. Is all of the treatment for her ano-rectal stuff at GOSH too?

How old is Asia now? Great to hear she's at playgroup and all and using a potty for wees :)

Sammy, sorry to hear that Lucas is likely to have more adhesions, that must be a worry, but great that the surgeons thinks he is doing well with his poos.

Enjoy the sunshine
xxx

Hi Krautmum
Her surgeon for the ARM is at GOSH and he thinks that for her to have full function and control she should be a size 14. He said no wonder she had the problems she did before. The whole reason we moved hospitals was because she got down to a size 4 :o and we couldnt get an appointment.
GOSH is an amazing hospital very big and very busy but completely humbling. And the staff are brilliant.
Asias seen at the Royal Brompton for her heart. Have you got a date yet?