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 again Cosmicdonut - sorry I didn't get back to post the other day.

Echo what the others say about it getting easier - I was almost sad to see my DD's colostomy go - it was so much part of her as she had it for 18 months. Once we got the hang of the bags (for her we found Dansac Nova mini easifold breathable ones the best) apart from a couple of stoma prolapses (very rare with her type of stoma - sods law!) and bag leaks and the odd skin irritation the stoma was easier to manage than having a baby in nappies! Don't worry to much about the PSARP op - DD recovered very quickly from this - had it on the Wed and we went home Friday pm. Re the dilatations - DD had 2 checks under GA in the 3 months post op and they only dilated slightly. She then had a hug gap before the reversal of over a year and didn't need dilating - so it may be that you don't need to do it - also I think it helps when they are younger as they are less aware and can be distracted more easily.

DD also has urinary issues and we had one aborted DMSA where they couldn't get a vein - in the end they took her to the specialist dept to get a canular in and even they struggled. She also has a duplex kidney but hasn't suffered from reflux thankfully.

Stoma output was very watery pre weaning and then went more solid although still quite soft - we found we had to change her bags more often post weaning as they leaked more easily.

Make sure you apply for DLA - I didn't realise we could get it until recently and we get #19.55 a week which helps with the cost of nappies and wipes - you can do it online too which makes it easier.

Thanks Ilovehugs it is always good to hear a positive outcome.

Welcome Buzzgirly good to see you on here.

Rach x

Hi cosmicdonut

Little monkey grabbing his bags! I used to make sure I gave DD something extra interesting to hold whenever her bag was available grab. She wore dungerees all the time and that stopped her from getting it. If you are having problems with it staying on, you can ask for coloplasts. they are thick, square hydrocauds (the skin coloured bit on the bag). They can sometimes help to perlong the life of the bag and help it adhere by making the area flatter. It's an extra whole to cut, but might be worth it if it helps keep the bag on. Interestingly, we found that we would have no leaky bags for ages and ages, but when ever DD was teething they would fall off every 30mins! I have heard of a few others who this happened too. Wierd!

Do try not to worry about the dialations. I was as worried as you and it's just a dim and distant memory now. Just think "nursing procedure", "Quick" and "not forever"!!

Best wishes to all the other mums on here. In time, I'm sure you'll bump into older children who's been through all this and are doing fine. With the right care, they all seem to get there in the end. Only last week I spoke to a SENCO who had supported a child with IA. He had a very high grade of IA and had soiling issues until his early teens. Through proper management of his care, none of his peers knew he had a problem. He was never teased. and eventually gained control. As for DD, I take lots of spare pants and wipes where ever we go and we have made the downstairs toilet a nice place with books, posters, unlimited DS time (which is restricted to 2 hours at weekends otherwise). She has a special, super comfy seat that has handles and a foot rest and now she quite happily takes herself off there to do a poo. Some days we get through with no clean ups. Most others we Ihave at least one. Some we have several. It really doesn't bother either of us. The main thing is she is HAPPPY!

I'll stop ranting on now. x x x

Also, we never let it restrict us. We went camping for a total of three weeks this year and even went to a festival. A bit of extra prep but not a problem!

Hi All,

Good to hear from everyone and to see some new people on here :)

Cosmicdonut, sorry to hear that you have to do the dilatations yourself, but as RachelHRD says, you may be lucky and your lo won't need as many, our daughter only had a few herself and seems ok, so you never know.

Our daughter also had one of these MAG3 scans (radioactive dye). Her cystic kidney has no function at all, but luckily her other kidney is working well and she doesn't have any reflux so far. I hope they can get it done next time, getting those cannulas in is such a nightmare. I'm sorry to hear that his bladder problems continue. I hope they can do something about that. The main thing is that you get to see the specialist so he's in the best of hands.

The bag changing will hopefully get easier. We always had to do it together, my partner was holding DD's legs and arms out of the way, while I was changing the bag, singing and making faces at the same time to keep her happy :) We always kept a few favourite small toys next to our bag changing station to keep her busy. As long as she wasn't tired or sore, she didn't really mind it at all after a while. Unfportunately her stoma was prolapsed for most of the time she had it, which made things a lot harder, but there you go.

Ilovehugs,

Good to hear that your little one is so happy despite all the problems and great to hear she is using the loo by herself. What age did she toilet train and how many poos a day is she doing now? Our daughter was born with a vestibular fistula, similar to yours by the sound of it. She is pooing so much at the moment that you worry it will never change...

Welcome buzzgirly,

Hope your lo is better soon and would love to hear some more about how he's getting on with this ACE stoma.

All the best to everyone
xxx

Hi Krautmum

We started potty training in the Easter holidays. It has been slow progress and a totally different story to training my DS who had no problems - no surprise there. I think the key is to remember that every IA is different. The anomaly is different, the surgical approach and how their care is handled and the child. We down played the pull-ups and pooing so much that I don't think DD cared at all about being in pull ups. i think in many ways I think she saw it as something that was special about herself. The biggest challenge has been to convince her to try. It's her that has to work out her sensations and how she is going to manage her body. My job is to support her and do everything with her diet that I can to make her poo soft and easy to pass. But it's her who has to want to do it. Making the toilet a fab place to be with unlimited DS has been far more effective than messing around with her diet and meds.

She soils the most when we are in public now because she doesn't have her comfy seat and all the bits and peices that make her feel relaxed. She soiled about three times at her friends house. But the day before and after stayed clean (more or less). Yesterday I think it was two slightly soiled pants. If we don't get the fruit/veg/fluids etc in or give her time to go to the toilet she does get bunged up and can spend all day pooing. When she gets like this, the best way is to just give her time on the toilet. We actual encourage her to go after lunch and after dinner, which she is happy to do now.

The potty training has actually helped the constipation I think because she makes the effort to empty herself. He poos have got more to the size (width) of what I would say is normal, since Easter.

It's been expensive in pants and a bit messier but not a huge nightmare. When we go away I just take tonnes of pants and wipes.

I think these children just need to want to do it for themselves. I went from thinking it was impossible, to seeing little glimpses of progress and now I just think it will take as long as it takes. But she has proven over the last 9 months that as long as I support her toilet/diet/encouragement etc she can do it. The next step is just doing it more. Ultimately I have to teach her to look after herself one day.

So she would have been about 3 and a half.

Oh yes and normal poos range from 1 to 3 a day. When she gets bunged up it will be 1 day of hardly anything to a day of many many 'soling poos'. Potty training has been helpful because when she was in pull ups we had to just wait for her body to sort it out as she didn't seem to really try, Now when she gets like this she will actually sit on her toilet with books/DS and lots of attention. She actually pushes to sort herself out and that has really helped her constipation.

One last thing...DD did used to (and still sometimes) do so many poos. I wondered too how on earth she would manage to be in pants, but potty training/getting her diet/meds a bit better really helped. It's building up the muscle tone and when they are actually making the effort themselves and learn to use what muscles there are I think that's why its helped. x

Hi
haven't posted for a while but I do try to keep updated with the thread.
Welcome ilovehugs, cosmic donut and buzzgirly.

I just wanted to say how uplifting I found your posts ilovehugs. My son is 26 months old and 8 months since his colostomy reversal and continues to poo up to 20 times a day. We have tried a whole load of everything, little has any effect, but reading your posts has made me feel so very hopeful that as he gets older things will improve.

thanks.

Hope everyone's LOs are doing well.

MrsS xx

That's so great to hear that Mrs Simon. DD would have many days when we were constantly changing her nappy. We came to realise that this was when she was constipated. I think constipation is much, much more complicated for IA children. Even when her poo was just marginally dryer/stickier and or she wasn't up for making an effort to push it out, she would get so bunged up and continually do all these constant tiny poos. It was so frustrating. If she coughed when I was changing her nappy, more would come out and I would think "just push it out!" but she either didn't know to do that, didn't want to or couldn't feel it because she was so bunged up all the time. This is why the potty training seems to of helped. There is no quick fixes with IA constipation either, because the rectum has to 'heal' back to a decent size if it has been constipated for ages. That improves the mobility and the child's awareness of being full and needing to poo. We now have ultra sounds at DDs checkups so we can keep an eye on her rectum size. When she was really struggling it measured pretty big, but after things improved it shrunk down by .5 of a cm over a period of many months. I've been told that children with the 'higher' grade of IA, where there is little to no sphincter muscle to work with, struggle the most with continence. Even in the worse case scenario, it is possible for these children to achieve continence through bowel management programmes. Our DD has very, very recently shown us (after 9 months or more of potty training) that she can feel when she needs to go for a poo and take herself to the toilet. But she will only do this at home at the moment. Other times, its us reading her body language or just giving her toilet time as part of the routine - like after dinner every day. this has helped because I think it may have 'trained her bowel' a bit to go that time of day. It means that she is empty enough most of the time that she can go through a morning at nursery without soiling. In the afternoon we are often at home after lunch where she can have another go. She is feeling more confident now to go at nursery though. So, yes, yes , yes there is every chance that things will improve. It's very early days for DD, even earlier for your DS.

Last anecdote - There was an older teenage boy in the opposite bed on our ward once. He had had a stoma as a child. Not sure if it was IA. Anyway, he had ended up having an ACE. An ACE is a more continent way of administering a daily enema. He said that he had to be more careful doing sport, but that was it. He had started to gain sensation so had had the ace reversed. He walked out of hospital with a working bottom. We also met a boy who had a 'high' variation of IA. He had bladder issues as his uretha hadn't developed either and he had a bit of his spine fused. These were not causing problems though. As a young tot, his mum said that the PSARP had been 'botched' by his surgeon. It caused so many problems that he had a colostomy redone and that's how he was left for many years. He and the mum decided to give it another go under another surgeon and that's when I met them. His operation took many, many hours and I believe that he had some very talented surgeons in there who did some painstaking work. Anyway, we saw him at outpatients. He was doing amazing. Mum said he was now CONTINENT!

Sorry for essay but I think it is so important for mums to have some hope. Especially in the early days.

Hi I lovehugs,

Thank you so much for the lengthy posts and telling us in detail what your days with your dd look like these days and how they used to be before. It really does give me hope that things will improve one day!

Our daughter has the same issues as your lo experienced. Days of constant pooing with very little coming out and then days of pooing lots. I noticed you said that her poos have got to a more normal size/width a while back. Our daughter, although her anus us apparently 11cm in width, only ever poos out these little strings of poo which are about 4 or 5mms in width and sometimes these really flat "bands" of poo. I can't help wondering why they are not bigger given the size of her anus. Was it the same with your lo?

It's encouraging to hear that potty training has made things better re: constipation. Funny enough, our son (now 3) used to poo about 3-4 times a day before he was potty trained, now he only does 1, sometimes 2 poos a day, so potty training had a similar effect on him, even though he is completely healthy.

I must say, I find it quite hard sometimes to know what to do with her diet/meds as things fluctuate so much from day to day in terms of the amount of poo she does and also the frequency. I sometimes find it difficult to tell if she is getting constipated or if she has just emptied her bowel the day before and there isn't much there.

Hope to hear from everyone soon
All the best
Krautmum
xx

Hi

I managed to get back on and read through the thread. It really made me think about the long road the DD has been through, but wanted to let all the new mums know that it DOES get better! the beginning is so hard, and the shock was terrible but once you get into the swing of things it becomes normal.

ilovehugs the story you shared about the boy was with the ACE was just what I needed to hear! It gives some hope that all this stress will be for something so positive in DD's future.

krautmum my dd was similar with poos, some days it felt like i was changing nappies constantly and then the next she would be clean - either one made me panic

cosmicdonut i hope everything continues to go well for your lo.

I will give you a quick, well I'll try to make it quick, recap of dd up until now:
She was born with a hole in her oespopahgus or (TOF/OA), imperforated anus, cloaca - where vagina, bowel and urethra had fused together, and missing her cocyx bone. She also has some slight kidney reflux.

She had TOF/Oa repaired and colostomy done at 3 days old. She has lots of issues with swallowing which will affect her for the rest of her life. She had the cloaca separated and bum opened at 8 months, and the pull through at 15 months.

We had the same experience of sore bums, the ilex made a huge difference-luckily my cousin lives in states and was kind enough to send it through to us. I know the local community nurse now has some in stock to give to parents - might be worth speakign to them about getting some. the orabase paste was also really good too.

Anyway about 2 months later, my dd had an mri to check on her spinal issues and they noticed that her bowel was completely compacted! We are so lucky that she had this done at that time. We then went back to hospital and came home to do twice daily washouts or enemas, and also dilations on her. This was not a good experience but we both got into the swing of it eventually. She was also on 6 sachets of movicol a day by then.

DD only has half a working sphincter muscle so surgeon decided that her best chance of getting bowel working was to give her an ACE which was done in September. It has not been as easy as we'd thought, we have had problems with catheters and getting the balance right. it also very difficult to get a 3 year old to sit on a potty for an hour!! We are persevering and hoping to get a button fitted soon whcih will help with washouts.

If there is anyone out there who has any experiences of the ACE I would be really greatful to speak to them? And also if there is anything I can help with any of the lo's please get in touch.

Hi Krautmum - It's so great to swap notes with someone who's DD was born with the same variation of IA. Her 'poo patterns' sound very similar to DDs. Yes, until recent months DD's were always long and very thin, ribbon like sometimes. I used to worry that her bottom was too narrow. It's only really since the summer that her poos have been what I would describe as a 'normal' width for a child of her age. We haven't made any massive changes with her diet and meds. We have reduced the movicol a bit and increased the fruit and water. Maybe this got the consistancy a bit better? But, I think the main reason is this....There are TWO sets of muscles that people use to do a poo. One set is automatic, the other is manual. Now DD is actually TRYING to push her poos out and learning about her muscles, sensations - toning them as she does so, I think has improved it.

Diet wise she has lots of ...

water
wholemeal
fruit (especially prunes/apricots/pears)
veg
We tend to latch these onto every meal.

We avoid bananas/apples as they are meant to be constipting. White flour is meant to be constipating so I make allot of stuff fresh and do half white half wholemeal. I don't want to cook seperately for the kids and too much fibre would be bad for him. I avoid like the plague - Supermarket bread. Even the wholemeal stuff. A baker explained to me once about the stuff thatdo to modern bread to make it quickly and cheaply and stay fresh longer Fine for your average person but not good for the chronically constipated. So, I give her wholemeal wraps (good ones without to much added stuff), homemade bread or bread from traditional bakers. For milk, I give her pasturised, un-homoganised. You can only get it online or in the form of 'Gold Top' at Tescos. Homogonsing is when the cream is 'pummelled' through the milk so it doesn't seperate. They do this so it looks nice and you dont have a layer of cream on the top. There is a school of thought that this makes it much harder to digest. It's one of the things we have changed over the last few months when DD has improved so much. But it could be a coincidence. Going to keep giving it to her just in case - and its delicious.

Buzzygirl - Great to 'meet' you. It sounds like you and your DD have been through so much. I hope things get easier with the ACE. A specialist nurse that I will probably see in a few weeks at outpatients is a bit of an ACE specialist. She may know of places where you can touch base with other parents who children with ACE or support. I can ask if you like? As for getting your DD to sit on the toilet. We had this problem with potty training. Our DD just did not want to 'invest' any time on the toilet. She will spend ages on there now happily and we think this is because of...

Access to hand held DS computer thing only when on the toilet.
Piles of fav books next to the toliet.
Pretty posters of her favourite characters on the walls.
A cheap yet very, very supportive and comfy seat thing. It has somewhere to put her feet. Handles, very wide seat.

She will now happily spend an hour on there with a combination of books and DS. Not ideal for you to have to do that, but maybe if she would at least co-operate it would be a nicer hour for you both...

Best of luck and I hope things keep progressing well for you x x x

Krautmum - Just re-read your post and your DD's 5m poos and ribbon/bands are EXACTLY what DD used to so and still does sometimes when she gets constipated - how wierd!

It is a balancing act with the diet/meds - especially when they are growing and the ratio of to all this and their body weight changes. We do end up 'paying' for days when we haven't been able to do the diet/toileting stuff with DD because we've gone away and done some thing nice. We try our best to limit the damage (i.e always doing self-catering holidays and lugging fruit & veg everywhere). But I want to balance all this with her having as much as possible a normal, happy childhood. So I just have to stand back and try not to visibly grimace when she eats a load of hotdogs and white-bread egg sarnies etc at a party. I just have to accept that her getting in a bit of a mess for a few days is worth it for her mental health - feeling like a normal child and enjoying herself. You're right that it is a balancing act!!!

Hi again all, am in need of some help! All of a sudden we are having major issues with bags not sticking. In the last 24 hours we have had to change bags 7 times including very unhappy changes at midnight and 5am. We haven't changed anything about bags and there is no difference in his skin. We think it must be down to teething as this has ramped up significantly in the last week. What is it about teething that makes the bags stick less and is there anything we can do to make them stick during this time? We are using half moon extender things on top of the bags but they aren't really helping. Don't think my poor nerves can take so many bag changes, I'm exhausted I still get really anxious changing the bags and dealing with leaks.

Me again, we have just got back from the local hospital with LO. His Stoma has the normal Stoma part where the poo comes out from and another opening called the mucus fistula. Normally we just put a light dressing over this and it doesn't really do much. This morning we have had the most horrible stuff spewing out of it and are really worried. The hospital can't explain it but have taken a swab. Has anyone else experienced this. The only other time this has happened is when they put dye in there for a loopogram. LO is very out of sorts and we are really freaked out:( The local hospital are clueless and we end up ex

Explaining stuff to them (sorry, hit post before I meant to!)

Hi cosmic

Sorry to hear you are having a tough time. Have the hospital contacted your usual hospital for treatment? I tend to call the surgical ward at St George's if I have any concerns and ask to speak to the on call surgical registrar. The problem with local hospitals is they don't have the in-depth knowledge the specialists do. Might be worth calling in the morning and running it past them.

With Ella she had 2 openings within the stoma - one for poo and one for mucus so it was kind of hard to tell when it all ended up mixed up in the bag. Teething could make a difference though as it can make the poo runnier.

Hope he is better soon and you get some answers

Rach x

Hi All,

Cosmicdonut, it sounds like you're having a terrible time. Our dd also had a mucous fistula, but apart from a little mucus etc, I don't think it was ever spewing anything out, so cannot help you with that. If I was you I would always get in touch with the hospital where she has surgery for things to do with the stoma. We always did, our lo's stoma kept prolapsing, as they don't always have the expertise, especially with babies/toddlers. I hope you get it all sorted and it's nothing serious.

Re: bags, sounds like a nightmare. We found them hard to stick for a while, while our daughter was sore around the stoma, but what helped us were the Eakin Cohesive slims first, making sure you get as tight a fit as possible around the stoma and then filled any gaps gaps with Pelican paste. The eakin rings prevented the poo from seeping under the bag quite so easily and helped them stay on a little longer. I think they were definitely the best thing we used and helped heal up some really sore/bleeding bits. Good luck with it all and let us know how you get on.

Buzzgirly, you really have it tough with so many different things to worry about. It's difficult enough dealing with all the bowel issues, without having to worry about her swallowing, spine and kidneys as well. I hope you have good support from friends and family and that you will get on top of using the ACE stoma soon. Hopefully things will get easier for you and your daughter soon.

Ilovehugs, thanks so much for all the info and tips. It's reassuring to hear that your lo also had very similarly "shaped" poos but that it's now much more normal. I always worry that her bottom is too small or that there is sth wrong with it, because of the think poos and also because it always bulges strangely on one side when she poos. I hope it's all part of the process and that things will improve when she's older, as they did with your daughter. I'm sure I will come back for more tips at a later stage! Worth trying the un-homogenised milk (couldn't see it in our local Tesco), will look out for it. Also worth noting about supermarket bread. Luckily our lo has a more varied appetite again and doesn't eat so much bread, but will have to watch it with the pasta as well. It's hard at this age to always get the right thing into them, when you're desperate fro them to eat and gain some weight!

We've just had about a week with raw/bleeding patches on her poor bottom, but it's finally getting a bit better, thanks to the Ilex.

All the best to everyone and hear from you all soon
Krautmum
xxx

Hi eveyone - thanks for the warm welcome!

cosmicdonught sorry to hear your lo is having such a tough time with the bags. Our daughter also had mucus fistula, but we were always told not cover it up with the bags - we sort of had to shape them around the main stoma. Also we used to put in little gel sachets which soaked all the watery stuff up and solidified it, this really helped with getting the bags to stick more. We used to get them from the same company as the stoma bags, I'll see if I can find any of them to see what they were called.

ilovehugs that would be great if you wouldn't mind asking your nurse if she knows of any groups for children with ACEs. I have searched online, but haven't come across much, DD also seems to be very young to have one. DD currently has a portable DVD machine which she uses on the potty, this is the fifth one she is on!! She seems to have a knack of breaking them. Due to DD's swallowing issues she has a rubbish diet, can't swallow fruit without choking or eat bread etc. It was fine when she was little and everything was pureed, but she now won't touch anything that has been mushed down - it gets very frustrating.

krautmum YOur poor DD, hope her bum is better now. Ilex is amazing stuff, it was the only thing that seemed to make a difference to DD's bum. I used to dread nappy changes so much when it was like this.

DD had a new catheter put in her ACE a couple of weeks ago, it now looks like it's infected. As she hates the washouts anyway, this is just causing extra distress as she won't let us touch it. The nurse got us some ointment to use, but it's impossible to get near it. Finally got some anti-biotics but DD is gagging everytime we give it to her - I would just like for one week to be simple. Have many of you tried potty training with your DCs? Due to the ACE DD is now clean between washouts, but I need to start getting her to pee in potty. Anyone had much success? She is now 3 +1 month so think she should be ready for it.

Hi Buzzgirly,

Sorry to hear you're having such a tough time with the ACE stoma. That sounds horrible. It's so difficult when they're so young and you cannot explain things to them fully and they won't let you do whatever is necessary to get them better. We've had problems getting some of the antibiotics into our little one, it's horrible to literally have to force something into their mouth that they really don't want to have. I really hope the infection has cleared up and things are a little easier for you all and your lo is much happier.

We've had a few days of fewer poos, which has been brilliant, but unfortunately some diarrhoea since yesterday (we're talking some massive loose poos, requiring a full hose down and complete change of clothes) as well as some vomiting this morning. Looks like she is having a monthly tummy bug these days, but at least only threw up twice so far, so let's hope it's a mild one this time...

Hope everyone else is doing ok
All the best
Krautmum
xxx

Hi all - thanks for the advice regarding bags, we seem to be okay for the moment although do have the odd days of 5/6 changes for no apparent reason! Also, a washout of the mucus fistula seemed to sort everything although he did have another UTI which could all be linked.

Krautmum - sorry to hear your LO is not feeling well, fingers crossed for a speedy recovery.

Buzzygirly - hope things are getting easier.

Little update - our PSARP has been delayed until the new year as they want an MRI first because they may want to operate on the spine at the same time. We have had one attempt with a "feed and wrap" but of course it didn't work so it's looking like a GA will be needed to get it done. We are frustrated in one way but I am also a bit relieved about the delay as they are putting a suprapubic cathater back in at the same time and I am really not looking forward to having that and the stoma again.

We have had a letter from the DLA people to say we are not entitled as apparently care for our DS is no more than that of a "normal" child!!! Grrr, I should get them to come round and change stoma bags on a leaky day and empty catathers and see if they are still of the same opinion. We are going to appeal, but does anyone have any advice from when they filled into their forms as to what I can put in the appeal letter?

Hope everyone is looking forward to Christmas xx

Hi Cosmic,

It sounds like you have another difficult time ahead with tests/surgery etc. I hope it all goes well for you. Re: DLA, you are definitely entitled to DLA, we even got the higher rate at the beginning when she had the stoma, so I'm sure you are entitled to the same. I have used a website called www.benefitsandwork.co.uk. You pay about £20 "membership" which gives you access to some literature and advice on how to fill in your forms as well as how to go about an appeal. If it gets you the DLA that your lo deserves, I think that's £20 well spent. Hope it helps, I found it useful. It might help you to keep a diary for a few days and to write down everything that you need to do to look after your little one and also do a list of all the doctors they see, the appointments they have and the hospital admissions they have had so far. I seem to remember that's what we did. Feel free to PM me if you would like some more help.

All the best!

Hope everyone else is well
Kxxx

Hello everyone,

I'm new here and am reading the thread from the top so it will take me a while to get on top of who's who! I have 9 week old boy/girl twins and Chloe has an imperforate anus, she had a colostomy op at 4 days old and we are having her next op on the 26th January. I could just do with being able to talk to other people who are going through the similar things. Does anyone have any tips on what a baby can wear as tights? I don't want to have the top of the tights rubbing against her stoma but I really would like to be able to put her in a dress. Right back to reading!

Anna x

Hi Anna62, welcome and congratulations on the birth of your twins. Sorry to hear your DD has IA, I can't imagine having two to deal with while one needs hospital treatment. How are you coping? Hopefully reading this thread you will get lots of information, it really helped me with the bits that the consultants don't tell you. Not sure what to advise about the tights but if I put my DS in trousers I just make sure the waistband sits just under the bag.

Hi Anna,

Welcome to the thread. I'm sorry to hear Chloe was born with imperforate anus. Having twins is challenging enough, but dealing with a colostomy and surgery/hospital stays on top of it must be very difficult. I hope you get some support from family and friends.

Re: tights
Our daughter never wore any tights or leggins while she had the colostomy. I just had her in sleep/jump suits and dungaree style trousers. For dresses I would put a plain, fairly tight sleepsuit underneath, which sort of gave the impression of tights and that worked ok. I remember though being so happy when the colostomy was gone and she could just wear leggins, which put an end to the constant undoing and doing up of buttons!

I hope you are getting on well with the stoma care and the bags are not giving you too much trouble. Let me know if you need any help or advice.

All the best
Krautmum
xx