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 sugarbea, nice to meet you. I'm surprised your little one didn't need a colostomy seeing as they only did the op at 2 months. What type of malformation did she have? Has she got any other "VACTERL" problems? Good to hear that he VSD is closing up. I hope she is getting along fine and the fistula will not represent too much of a problem.

Hi PLP! Thanks for the details on weaning/pooing ;-) Our paed recommended we wean our lo earlier as she is rather light, and it should help with her weight gain and hopefully with the reflux. We only weaned our son at 6 months, so not keen, but we might have to, if her weight does not improve. I will speak to the surgeon first in any case, to see what they recommend as well. In the meantime, her newly created stoma has already prolapsed again and we had to take her to A&E last night as it was looking rather dark red and mottled. They said it was ok though and it's looking a bit better today. Can't believe though that our lo had to go through operation to sort out prolapse, only for it to happen again straight afterwards. Looks like we have no luck when it comes to stomas.... She's also gone a bit funny with her feeding, has been all fussy over the last couple of days and won't feed properly, but otherwise happy. Not sure what it's about, but there is always something to worry about.

Hope Cerys' temperature will come down soon and it's nothing serious. Good luck with those poos and speak to you soon

Krautmum xxx

Hi...
No vactrel associations except the heart anomoly....(her spine, kidneys, reflux and al the tracheo stuff proved to be fine...)

She was born with an Imperforate anus with vestibular fistula.
the vestibular fistula was quite low.. They dialated it and she was able to poo through that..without it causing any problem or infection..she was able to avoid the stoma after the op too as she could already used the fistula they pulled through..
I have never in my life b een so happy to see poo!

This meant after the op she healed really quickly, we were sent home after 2 days with the normal meds and she was absoultely fine, and still is except at the last IUA they found this new fistula...I have read that it can occur after trauma...childbirth/opperations etc and can be fixed....What worries me is they will have to cut through those all important sphincter muscles again in order to operate...her surgeon said her muscles were very strong so i'm just worried now this setback might make continence an either bigger issue....though her surgeon doesnt think anything of the sort..

I weaned her at 4 months but for different reasons....the more consistant the poo the more she gets to use the bowel and muscles.

my hospital has a medical university attached so when I had her, they knew where to look for a fistula and whether or not she could cope with it straight away...(as opposed to the 12 year old SHO who 30 minutes after giving birth said,"your daughter has no bum and will need a bag for the rest of her life"....)There is something about docors getting a bit uppity when they don't understand something so rare....My gp is particularly annoyed that i know more medical terms than him But my surgeon has written papers on the condition and apparently children are reffered to my hospital for their pull thru ops and care.

krautmum how old is you little one now?

plp hope she feels better x what age did you start trying potty training?

Hiya!

We haven't started potty training yet - Cerys wanted to be like her friends with knickers, but was having accidents all over the place. Our consultant has said she probably won't be ready until she is 3 or 4. When it's hot, we let her run around with no nappy, and the times she has had a poo accident, she seems to get quite distressed about it and horrified at what has come out of her body, bless her!

Do you mind me asking who your consultant is? Ours is Mr Griffiths at Southampton University Hospital and he is absolutely amazing - he seems to be a specialist with this and he sat me down and prepared me for everything near the beginning. Our family GP seems to have educated himself a bit since this has happened with Cerys, but if we ever have to see another GP, they don't have a clue!

x PLP x

our consultant is mr holmes at st georges in London...Its something he is particularly interested in too...I think consultants like a bit of rarety.. They told me my daughter would probably be a year behind with potty training...So we will have to wait and see how that goes..I almost want to start from now in the hope if i start earlier she wont be behind...lol (shes 7 months perhaps i can teach her to crawl to the potty)..

Is she in childcare yet? i was due to go back to work in september but i havent found anyone capable of dealing with enemas and constant changing of nappies etc...so i have had to hand in my notice and i cant even think about retyrning until her ops are over with....I don't really want to leave her with anyone either but eventually im going to need that income again...

she doesnt have a peadiatrician though....did you get one automatically....?

Yes I think we were appointed to a paediatrician automatically, not sure how that happened to be honest - we visit the hospital for checkups so often, it has all merged into one now! Although she was operated on in Southampton, the bottom consultant and the cardiac consultant both have clinics in our town which has been a Godsend as Cerys has got older!

LOL at teaching her to crawl to the toilet! The thing is, I know there's nothing wrong with the wee side of things and the poo side of things always takes a little longer anyway ime. But so far she hasn't even got the hang of doing a wee! I've made a conscious decision not to worry about it, otherwise she will sense it, and me worrying won't hurry things along in any way. I guess time will tell...

Cerys gets middle rate DLA, so I claim Carers Allowance - is that something you could consider?

She will be starting playschool in September, just a few sessions to get her socialising really. I was worried she may have to be potty trained but they are fine with her being in nappies thank goodness!

Hi PLP - we're very well thank you. dd has cardiology on Tuesday and we'll probably be handed over to cardiology adult services Where did the time go?

Glad to read that Cerys is doing well.

Hi PLP

I have applied for DLA but i wasnt sure where she stood or even if anyone would recognise it as a disability....Im awaiting a reply....
Though i was very impressed that it came up as an option when i booked my holiday insurance

Baby's op is 9th august (2 days after we get back from holiday) and i am hoping this is the last of them...seeing the consultant on tuesday to talk me through it..

I wondered if i should have a paediatrician i think the surgeon assumes the gp is looking after me and the gp thinks the hospital are...plus I never see the same GP twice. I think i may just opt against seeing a paediatrician....unless i'm really concerned...She is seen seperately at the royal brompton for her heart.

Its brilliant that she's starting pre school...have you ever heard from mums with children past the potty training stage or even women who were born ith IA?

Hi All,

Hope everyone is "well"

Our little one's stoma looks slightly healthier again, so hope it won't need anything doing until her big op at the end of August. Apart from the regular leakage and reflux (which is getting worse again) she's doing well and seems to be a very happy little girl.

Sugarbea, she's 4 months tomorrow. Her op is so late, because she had a chest infection on the date she was supposed to have it before, so we're running rather behind with everything. I hope it will finally happen in August. She has a vestibular fistula too, but a higher one, so a colostomy was unavoidable. It sounds like you're little one's malformation was a "better" one (for want of a better word). Great you didn't need a colostomy. While they're a life saver, they're also a bit of a nightmare as in our case. It's great to hear your girl does not to have any other problems, that must be such a relief. Do you need to give her regular enemas? I was wondering about childcare myself. I am not due back till next March, but I was worrying that she might not be able to go to nursery for the reasons you have mentioned. I suppose we will just have to wait and see. We have definitely learnt not to make any long term plans for anything...

PLP - could you let me know what allowance/support you are getting? I was wondering if our little one would be classified as disabled or not, as this will probably have all sorts of implications. Would be great if you could let me know. How's Cerys getting on with her insoles? I hope she got used to them.

Speak to you all soon
Krautmum xxx

Hi krautmum.....Your LO is 3 months younger than mine looks like we re learning together...
As things go, her malformation could have been a lot worse and things were looking really positive until they discovered this other fistula...I saw her consultant on tuesday and he said it was probably caused by trauma....She had the dialatations under anasthetic and he thinks the fistula occured then...He says it can be fixed but it's fiddly and can't guarantee she won't get another fistula...I guess it's best that he's honest...
He wrote a paper on a 10 year follow up on children born with ARM's..and 67% born with vestibular fistula were fully continent...those statistics scared me...but when i spoke to him about it he said that they only followed up 6 wih vestibular fistula so 3 and a half were fully continent and others had mishaps....The thing is because it's so rare they didnt have enough to give conclusive general evidence...just 67% of the 6 that they saw...So i'm ignoring it all now....

DDs op to repair the fistula is on the 11th and then i hope that will be it.

I didn't have the option to be flexible with work and what with all her opperations so early on I just don't trust anyone to look after her..I had bad experiences with nurserys with my son when it came to care and wellbeing and he was born with no medical conditions. (I'm in London and the nurserys are overcrowded, overpriced and full of underpaid unhappy workers...not all...but it's really difficult to find good care)

We have enemas to give to her but she rarely needs them...she has movicol in her bottle every 2 days in her bottle and it is just right for her...

Hopefully your LO will be finished with all her ops by the time you return to work.

much love
x sugarbea

Hi Sugarbea,

Yes, we'll have to swap tips as we go along. As much as you feel you're in good care at the hospital and you have all these specialists to talk to, it's the experiences of other parents and stories of everyday life that really help.

I saw similar percentages with regards to continence online and this is what our surgeon told us as well. Unfortunately we don't know yet which percentage our little ones will fall into... What makes me feel slightly better is that even those who do not have full continence are not going to have to spend the rest of their life pooing themselves, as there are ways of dealing with things and it's possible to clean out the bowel for 24hours so they're "socially" continent. Of course we're hoping that our little ones won't have to do this though.

We luckily have a good nursery for our boy. He's 22 months and does 3 days, which helps a lot, as we don't really have family to help out. Let's face it, looking after a new baby and a toddler at the same time is bad enough without all the health issues and appointments to deal with ;-)

Hope to hear from you soon
Krautmum
xxx

Hi everyone hope you and your LOs are well...

Quick update on DD.

The reperation of the post operative fistula was not as success (apparantly too tricky) so dd had to have the whole pull thru op re done from start to finish....:(

Apart from giving everyone a scare when she took longer than 2 hours to regain consciousness after anasthetic and the trauma of 4 bowel washes a day pre op she is recovering very well...They have done a much better job than the last time and used much stronger tissue...

Having a job keeping her still as she is now 8 months and walking round furniture and not looking forward to her having the dialatations all over again but feeling alot more confident about her long term outcomes.

Hope you are all well xx
Sugar x

Oh Sugarbea, that is such good news, but sorry to hear you and DD had to go through all of that, sounds frightening! I can't imagine Cerys going through it when she was mobile!

As far as the dilations, aren't they just the most awful things to have to do! I found it went against everything in me, but I knew it was the best thing in the long run. I still have the 'candles' somewhere in a box and I shudder to think of them. Cerys would often scream when we had to do them, and to this day she tenses up when I change her nappy, but then she realises it's ok and relaxes...

Sorry I haven't posted for a while - we went on holiday and I've been arranging a party for my parents (40th Anniversary, renewing vows, surprise for my mum!). It was almost as big as a wedding to be honest and now I have a chest infection as I think I've run myself into the ground!

Cerys has asked to sit on the potty a few times but so far she hasn't done anything. Just lately, she likes to know what is in her nappy when it's changed - "is it lots of poo mummy?" or "I think it's just a wee!". She often gets it wrong which I'm trying to ignore for now... We have her next paediatric appointment in October, I must check when her next 'bottom consultant' appointment is too!

Hope you're ok krautmum? Yes, Cerys gets middle rate DLA, which is being reviewed in December. I can't remember the amount off the top of my head though... I also get carers allowance as there was no way I could have gone back to work. As it is, I seem to be the only one who changes her nappy, apart from my mum who we only see once or twice a week. DH does it if he really has to, but others have commented that they don't want to hurt her or are a bit freaked out from what she's been through! She starts playschool in a few weeks, and while they have said they are happy to change her, I must admit I'm slightly anxious about it! The funny thing is, I don't think Cerys really cares who does it lol!

I've waffled now, sorry
Hope you're all well xxx

PLP ....you did the dialatations yourself???????? dd has to go under anasthetic everytime....which i HATE.....esp with the vsd in mind and considering how long it took her to wake up after this recent one....Though i'm not sure if home dialatation would be a good option considering thats how the fistula occured in the first place....

I must admit it looks alot stronger now...

I applied for dla a few weeks back and they are still deciding so we will have to wait and see..

In light of all the complications and dds condition ive re thought my own life a bit and decided to study biochemical medicine of all things...A collective LOL for most that know me as i'm rarely very serious about anything but i've discovered i have a nack for retaining medical information and biology..so i'm going to give it a go next sepember...DD more inspiring than ever..:)

Hi all,

Nice to hear from everyone.

Sugarbea, I really feel for you. To go through all of that twice must have been awful and really worrying too. I am glad to hear that it all went well though for now and that you feel the outcome is now better than from the previous op. Let's hope this is it now and she won't need too many dilatations. Our LO will also have them done under GA, which is very worrying on the one hand but listening to the stories from other people, I'm very glad we don't have to do them ourselves. Great, that you have decided to study biochemical medicine. Sounds like you will have your work cut out for a while. Funny you should say that, I found the same with our LO's medical stuff. I normally struggle to remember what I did yesterday, but for some reason all her medical details get soaked up and retained. Must be because it's something close to the heart.

PLP, good to hear Cerys is getting interested in the potty, I suppose that's the first step and the rest will hopefully follow. I hope you're making good progress in any case. Let us know how she goes at playschool. How are her feet?

Our little one has her pull-through op coming up on the 31st if all goes according to plan this time. She just got another cold last week, but I'm hoping it won't turn into a chest infection again this time. As much as it's scary, I just want to have the op done now so we can finally move forward, one step closer to having the colostomy reversed. She is getting so fidgety now, that it's difficult to empty her bag without her getting poo all over herself, let alone change it... I will ask for a DLA form and see what they say. I was told to describe my worst day with LO in terms of extra care she needs compared to a normal baby. Will have to see what the form looks like when I get it. Any tips with filling this in?

Apart from the "bottom" stuff, we also had further kidney ultrasound, Mag 3 kidney scan and Reflux-impedence study, still waiting for results for all of these. She also has to go for a pelvic ultrasound, as she had some blood in her nappy. The stoma nurse thinks it's from her mucous fistula, but the peadiatrician is worried that it might be sth like "premature periods". I really hope it's just the fistula causing this, as I can't imagine having to deal with anything else... We shall see.

Apart from all the medical stuff, she is a very happy and easygoing baby, which is great. That makes the whole thing much easier to deal with.

Hope to hear from you all soon
All the best
Krautmum xx

Hello Krautmum,

The DLA papers are long. I found filling them out quite emotive. Its wording it that is honest and that is describing all the limitations, extra laundry, lack of sleep, pain management for child, lack of going out to public play groups due to risk of infections (cold-croup-chest infection=another six weeks of prepping for you and your child to go thru surgery..) Also how it affects your work, I found I had to quit my job at one point to keep up with our hospital/clinic routine. It may be hard as our children are always perfect in our eyes, but it's worth it to offer some respite and financing help.

My son is 2.5 and we have had 2 reversals, neither successful, the waiting for the durham smith in a few weeks, (more extreme analplasty due to potential loss of sphincter)

Have only just googled stoma baby again after a long time, nice to see there are so many of us out here supporting each other.

Good luck everyone.
xx

Hi there,

Nice to meet you :)

Looks like your son has been through numerous procedures already. I'm sorry to hear that he needs further surgery on his new anus. What exactly is the problem leading to him needing further surgery? It must be a nightmare to have to go through so many, especially now that he is older and a lot more aware of things. I hope it goes well this time.

Our daughter finally had her anorectoplasty last week, which is such a relief. The surgery has gone well and she's pretty much back to her normal happy self. I'm a bit worried about the wound getting infected, as I'm not sure whether we're cleaning the area enough (or too much?). It's hard to know, but hopefully it will all heal up well. We've got our first post-op appt at the end of the month. I hope we won't need too many dilatations and we can have the colostomy reversed soon. Where is your son having his surgery?

Thanks re: DLA, I tried to fill in the form, but it is really hard, as it's geared towards older kids, but also the way it is worded it's hard to apply it to your own situation. Will give it another go when I find the time. As you say, it would help to get some support.

hope to hear from you again
take care
krautmum x

Hi all, sorry I haven't been on for ages, the summer holidays ended up being even more hectic than I had anticipated!!

sugarbea: Yes, we had these 'candles' that we had to put up her bottom every day and each time we saw the consultant we got a bigger one. I rarely think about how awful it was, as I found it really hard and if I found it that hard it must have been awful for Cerys!!! I have kept the last two of them - towards the end we were only having to do it once or twice a week or so. Maybe it's a different type of dilation thing to what your DD is having?

Good for you as far as the career choice goes, you'll be brilliant - nice to hear something positive coming out of your situation, and I'm sure you'll be able to help many people in the future with your knowledge...

Any news from DLA? Cerys's is being reviewed in December but I'm convinced she won't get it again - we'll see!

krautmum: Glad to hear the op went well - any news on timescale for the reversal? How is the wound doing?

Cewstubbs: Welcome! Sorry to hear the reversals haven't been successful so far, sounds like you've really been through it! I'm always relieved to hear we're not alone, but sad to hear that others have had to go through the same or even worse

Cerys has lost all interest in the potty now and I'm taking her lead - I tried to 'encourage' her but she cried and insisted on having a nappy on, so we've left it for now. Her feet don't seem to be any different at all, not that I've noticed anyway - we have a follow up appointment in October so we'll see what they say. She loved playschool and childminder the first week, but got rather emotional the second week (probably realised she would be away from mummy and daddy!). Then this week went well, so we're taking it week by week - being away from us for two days on the trot seems quite a lot to take on board for her, but at the same time it's doing her the world of good to be with other children. She's definitely hit the terrible twos (despite having just turned 3!), but is an amazing character who keeps us entertained from morning to night (thankfully not through the night!). I just wish I had her attitude to life, I'm still tired after my hysterectomy and have had a few low days. I'm sure it will pass and I'll be up for anything soon!

Love to all, PLP xx

Hi!

Just saw your message. The wound seems to be ok, although hard to tell and surrounding area is still quite red. We have our first post-op appt next Tuesday, which I'm really glad about as they'll be able to reassure us in that respect. I am hoping we will know some more with regards to how many dilatations she is likely to need, but but now sure what exactly the surgeon will do on Tuesday and whether we will get a date for the reversal. That certainly seems a long way off, but we'll see.

I've just handed in my DLA form today. I found it a complete nightmare to fill in. It's taken us hours and hours and I got me all stressed out. So glad we've sent it off now! Let's hope it was all worth it.

Good to hear Cerys is getting on ok at playschool. It always takes a while for them to settle in, so I'm sure she will love it soon enough. The interaction with other kids is definitely great for them.

Have a good weekend
xxx

Hi everybody..hope you and your LO's are all well..

I just heard back after 4 months wait from the DLA and they said no as they conclude she will not be suffering for longer than 6 months...(shes not even finished the dialatations yet so how they have come to that conclusion i dont know) but i've appealed it and go extra evidence and support from the senior registra now too. I have also asked fo a medical professional to look at the claim as i'm not happy with some jobsworth sitting behind a desk making a decision based on something they don't understand...

However i was told that they quite often refuse first time round...Nightmare as we are down to just one income now.

On a lighter note DD is doing very well..She has healed very well and it looks much more 'normal' to my untrained eye. She's 10 months tomorrow and just graduated from cruising to her first few steps unaided and enjoying life by no bounds..

Unfortunately the fact she had to have the pull thru done twice can apparently significantly hinder chances of full continence but if anyone can beat the odds she can..

Big love to all the babies x
sugar x

bump
slimbo, welcome when you get here :)

Hi,

Sorry to hear about the DLA. We just had ours confirmed, but looks like the colostomy was the main factor, not sure though. I would appeal in any case, it's worth trying, especially as it all takes so long to fill in the form. Wow , I can't believe your daughter is walking already. I'm sure you can't take your eyes off her!

Our daughter had her first dilatation 2 weeks ago under GA. She wouldn't let the surgeon have a good look at her new bottom when she was awake so they had to put her to sleep for it. Unfortunately her new anus is quite small so it looks like we have got a few months of dilatations ahead of us and the colostomy will of course stay during that time. At least it all seems to be healing quite well, which is great. Will keep you posted.

Have you got any idea how long you will need to do the dilatations for? By the sounds of it we may have to do them ourselves after a while, which I'm not looking forward to at all.

All the best with the DLA !
Krautmum xx

Hi all
I was told by the DLA that the reason I was refused was because she had had her last major surgery and they feel she wouldnt need help for longer than 6 months...So i suppose enema's, surgical dialations, bowel consultants, heart consultants, special diet, lifetime medication is something every baby has to go through...lol "head in hands" anyway I printed off a whole lot of research about the after effects of surgery and life after reversal and a wonderul supporting letter from my GP encouraging a PROFESSIONAL to do some research so i'm hoping for the best.

Anywho on another down note we've now been re referred to great ormond street after a nightmare with our hospital. I requested dds medical notes and they confirmed the hospital was at fault for dd's second fistula, it was opperative trauma and could have been avoided, which has now reduced her continence statistics significantly. For all the IUAs and ops and conultations i have to chase them up for 2 weeks each time because the secretary is never in and the consultant forgets or is on holiday, and the registras always change so no one remembers her. Nightmare..So hopefully her new consultants can help. It's been 3 months since her 2nd reversal and no dialations because they havent been able to pull them self together, now dd is finding it hard to poo again.

Krautmum...How many dialations has dd had so far..I think my dd had about 5 before the hole was big enough to leave and on the 5th one they perforated the vagina!! :( which is rare. But the hole did stay bigger eventually.

Slimbo....Ho often do you give her the lactulose..I have to give DD 2 a day possibly one and a half to make sure her bowel movements are soft but not runny..Is it possible your dd might have a blockage?? I thought my dd didn't need as much as i was giving her she was pooing as normal but when we went for the second op she was so blocked they had to do a colonic lavage (medical enema) She showed no symptoms..Sorry to hear she has a phobia about it..We're all a bit obsessed with the word poo here..Even DD has started to say it when i change her bum..lol I don't think she knows what it means but she knows its something i talk about when changing her bum.

Hope everyones LO'sremain happy and healthy xx

Hi All,

Sugarbea, sorry to hear you've been having such a nightmare with your hospital. Which one was it?? Great that you could change, I hope it will be onwards and upwards from here. It's hard enough without having to worry about that kind of stuff as well.

Our dd had only one dilatation so far. They dilated to a "nr.5", I think the aim is to get to a "nr.10", so it sounds like it might take a while... Our next clinic appt is in 2 weeks, so we shall see. She's now beginning to get more and more sore bits around her stoma, which is a bit worrying, as we just cannot seem to get rid of them. I hope she'll have the reversal before it gets too bad.

Will your lo need to have the whole dilatation procedure done again? I really feel for you! Let me know how you get on.

Slimbo, welcome :)

Looks like you've been through a lot. I can't believe your lo had the colostomy for a year longer. How did you get overlooked for a year?? It sounds like there are all sorts things going wrong when it comes to people's medical care. I have to say we have been lucky so far from that point of view.

What type of anorectal malformation did your little one have? We're still far off from potty training, but from what I hear it takes a long time and a lot of patience and some of them don't start till they're 3 or 4. Hopefully, with a bit of time, you're little one will get into it. We also have a 25-months old boy and he still seems quite a way off from knowing when he is about to do a poo and doing it on a potty and he has no health issues!

All the best and keep us posted
Krautmum xxx

Hi everyone,

I'm so glad I found this thread, it's been so useful (warming the bag in the armpit first is brilliant, although I find sticking it in my bra gets it warmed up quicker!) and it's good to read about people coming out the other side.

DS2 is 24 days old and has been diagnosed with Hirschsprungs. He had surgery to repair a perforated bowel and create an ileostomy at 4 days old. We're waiting to see the surgeon next week to see how much bowel needs removing and when they'll do it.

The stoma care has been ok. We're on the pouchkins which are fine. A few leaks (4 bags in one day last week, gah) but the nurse gave us some duoderm last week which has sorted that. I still find it a bit grim changing the bag, especially cleaning around the stomas because he screams. He's had really sore skin but the orahesive powder seems to be helping him heal.

Can anyone recommend a good barrier cream for around the pouch? His skin gets red raw where the top of his leg rubs against the bag. I'm sticking cotton wool in his nappy so it's a bit softer but it's not getting any better.

Slimbo, I can't believe you were overlooked for a whole year, that's so shocking.

Nurse is here to change DS's dressings but I'll be back later.

xx hm