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!

Welcome hairymelons!

Congratulations on your little one and sorry to hear he has Hirschsprung's.

I remember how hard those first weeks were. It's hard to take it all in and deal with the day to day issues, as well as not getting any sleep. It will hopefully get better soon from every point of view.

We found changing our lo's colostomy bag a real nightmare in the beginning. I used to get so stressed out, because I didn't know what was normal and what wasn't and anything different would completely throw me. Luckily we did get used to it after a while, although we ended up having to change her bag more and more often, rather than less frequently.

Re: bag rubbing on the leg
We never had that problem with our daughter. What part of the bag is making the leg sure? How are you doing his nappy up? We always fold the end of the bag up and then fasten the nappy underneath, which seems to work.

Right, got to go. Speak to you soon
Krautmum xxx

Welcome hairymelons

I'm not much help when it comes to stomas as dd miraculously avoided one. However my LO's cousin has hirchsprungs (apparently there is a genetic link between it and anorectal malformaions)..He is now 22 and lives a very normal and healthy life. Just a matter of remembering to take meds as and when. (It's always nice to hear a positive story)

Krautmum How is dd doing after her dialation? Mine just had the first one after the second surgery and will probably need a few more too. But she seems to be coping really well..Oh and finally heard back from the dla after after they reviewed their decision...We went from nothing to higher rate in 60 seconds. With help from my gp and the continence nurse..

Hope everybody is well....I'm off to order DD a big sparkly princess birthday cake, I can't believe she will be one next month..:)

Thanks krautmum and sugarbea. It is lovely to be in your company.

I think he just has very sensitive skin as he reacted to the adhesive on all his sats stickers etc in hospital. It's just the fact that something is there for is leg to rub against making it sore. I'll keep going with the cotton wool and barrier cream for now.

It is getting easier to change the bag, especially since we introduced a dummy! He stays fairly calm now so it's not so stressful. Except when I clean between the stomas, I think that must really hurt because he recoils and screams. I'm getting a bit quicker at it too which helps- we're down from 40 minutes to about 15 minutes per bag change!

Krautmum, why did the bag changes become more frequent?

Sugarbea, I do need to hear positive stories so thank you. I am expecting the worst for DS though of course!

Hi All,

Sugarbea, great to hear it worked out with the DLA in the end. It's good to know you still get support even if you don't have a colostomy, as they're hardly like "normal" children even when they're bottoms are in working order.

We just had another appt with the surgeon on Tuesday. It looks like one of the stitches on her new bottom is causing some irritation. He wants to examine her again under GA and have a look at it, and take the offending stitch out. I hope this does not mean there will be a problem with it. Let's see. He also wants to push her badly prolapsed stoma back in. This will all happen next week, so will let you know. Not sure how many dilatations she will need. Surgeon says he can't predict it either.

Hairymelons, great that you're getting the bag changes under control. You seem to be quicker than we are. I think our biggest problem is the prolapsed stoma. Because you have to slide the hole in the bag over the prolapsed bit of bowel, we have to cut much bigger holes and it seems to make the bag less sticky, as it touches the bowel when you put it on. Not sure this makes sense to you. I also think that her kicking makes the bag come loose, although it's hard to say. We are now onto bigger bags, which seem to work much better. We were using the smallest size for ages, as it seemed to still fit her, but maybe that was part of the problem. Now we still change the bag every other day at least, as she has some sore bits around the stoma, which get worse when you leave the bag on for too long. Anyway, enough of that....

Al the best to you all and keep me posted
Krautmum
xxx

Hi Again,

Sorry for the long absence. We have been out of the Royal for a good week now and i am finally getting my brain back.

Krautmum, have they not suggested winding the prolapse back in? How long is the prolapse. We had the first stoma prolapse into a 12cm horn shape and i found gently winding it back in with warm water helped, as the cutting the whole so large was silly.

Welcome to new faces, hairymellons, I use the Convatec Protective Paste 3026, make sure to use one without alcohol in it. My LO (is it little one? or Darling Son? can't quite wrap my head around it..) bag would rub his leg, we used medical bandages, hair bandanas all sorts, as your LO gets older the bags will sit better...we'll ours did.

On another note. I have finally raised some funds to get a website going for parents and carers of babies and toddlers with stomas and related stoma stuff. So i will soon be asking for some of your tips, tricks and uplifting or funny stories, if anyone cares to contributes. I am still in the early stages but i think mum's know best...so will be in touch as soon as i get some basics sorted out!!

My DS is well, we just had the Durham Smith done at the Royal, which will hopefully solve the anal passage closing over issue. Fingers crossed.

Glad to see everyone is still around. Yeah.
See you all soon,
All the best!!!
xc

Oh Krautmum,

Really sorry to hear about your little one and the stitch issue. I hope it all goes as well as possible. Good luck this week!! xc

Hi all

Just a quick update..DD's hospital is now completely changed and i've never been happier. Due to the old one leaving it 3 months inbetween the 2nd pull through and dialatation the hole nearly closed.. Thankfully her new consultant saw her today (a week after our out patient appt) and all is well. I didn't have to chase them up, or make a complaint or swear at the secretary :o

However for the next few weeks I have to dialate at home... :( Any tips would be appreciated as the "equiptment" looks scary.

But hopefully today was dds last day under anasthetic. The new hole is in a much better place and muscle control looks good.they tested it with an electric thingy (medical term)and the muscle reacted.

Anyway my beautiful dd is 1 on sunday and considering around this time last year we thought she might not make it here, she is as strong as ever..

Thinking of all of you and your dcs xx

merry x mas everyone xx x

Thanks Sugarbea,

Glad to hear there was a muscle/electrical thing reaction, that is a good sign. I can't remember name of that either, however, our consultant is always emphasizing it's importance. Great News and Happy First Birthday to your little one. xx

Hi All,

Sugarbea, great news that you could change hospital and all is going well now from that point of view. And great that the muscle function seems to be good. We haven't had this done yet, but then we're not that far along with dilatations etc.

Cewstubbs, good to hear that your son's anoplasty has been done,I hope that it's all healing up well. Which hospital is he under? Does he need further dilatations as well or is it now all sorted?

We've not had the best of times with our little one's stoma. It just kept prolapsing and there was no way of putting it in ourselves, not even the surgeons could put it back in by hand as it was so swollen. She's had 3 stoma revisions already, after which the stoma prolapsed again. After a few weeks of it popping in and out on it's own it started to look really big and swollen and unhealthy last week. We took her to A&E and after the surgeon had a look at it they kept us in. Turned out her left bowel is not attached to the abdominal wall as it should be so it kept prolapsing, despite all the revisions. The surgeon has now cut that part of the bowel out completely, so hopefully it will not happen again. At the same time she had a really nasty Gastroenteritis, plus viral infection, which made her really poorly for a while. Got back home yesterday though and she is almost back to normal. Amazing how quickly they bounce back from all this stuff. Unfortunately her new anus is still not healed up well enough for the surgeon to consider closing the stoma, so it looks like we might be stuck with it for another while. Also, because LO's VSD still hasn't closed up and she is getting more and more frequent viral infections, our cardiologist said he might want her to have the VSD closed up. That was a bit of a shock, as we thought she would definitely not need heart surgery at this stage. He'll make up his mind early in the new year, so let's see.

Until then we are trying to get away for the first time over xmas and are hoping that nothing will come in the way this time!

Wishing you all a merry xmas and a much healthier and less stressful New Year!

Sorry for the mile-long post!
Krautmum
xxx

thanks cewstubbs :)

krautmum so sorry to hear about dd's troubles :(
How big is her vsd..my dd still has one too and has had quite a few bugs and chest infections too but so has ds and he has no problems..Hopefully it's just the weather change but my gp always give me an antibiotic to cover the heart..hopefully they won't need to perform any surgery..how worrying for you. x

mrshippy, only just found this thread.
Ds had a stoma at about 2 months old. He then had it reversed at about 9 months.

Not sure if you still need help/advice but please feel free to CAT me and i will be more than willing to chat to you x

HAIRYMELONS just read you lo has hirschsprungs. Thats what ds was born with 3 (nearly 4) years ago.
Hope your lo is doing well, im also free if you wanted to CAT anytime x

hi all have 10wk old that had blockage in bowel and 1wk ago had to have illeostomy stoma bag fitted. He is still in hospital and the nurses are having a terrible time with bag leaking. They are changing the bag 3 times a day and more and his poor scar is not getting a chance to heal skin is all scalded. I have registered for ESP but am awaiting administrator to accept me. Any advice would be really appreciated as im so new and quite scared at moment. What is best to dress baby in what happens when you start spoon feeding Sorry for all questions but am so freaked out

many thanks in advance

Hi sammy,sorry about your lo. Things will seem better , I promise. When ds had his stoma I felt the same , scared and like my world had ended but it saved his life ...

Right, one step at a time . Don't worry about weaning until you are at that stage but just to confirm that this stage didn't affect ds . He was weaned at around 6 months a.nd was fed food as other babies. The food came through the stoma as milk did but maybe a little thicker and we found various foods produced different results lol ! As it would with your average child.

About clothing, we really struggled with leaking bags. Day and night and sometime 3 bag changes a day. We found initially we dressed ds in baby gros. Clothes that didn't have a waist band so didn't press on the bag iykwim. Clothing that allowed little contact.

If we wanted him dressed up for a special occasion for example, we would choose either a lovely gro or any outfit that had elesticated waist and tbh we never had him dressed in such outfits for long. We also didn't have him sat for long periods or in his car seat iykwim .. The bent posture put pressure on the bag. We allowed him to lie flat when possible . We also expelled air from the bag when possible to stop it from popping or leaking.

I'm free to you cating me any time and good luck x

Hi Sammy

Sorry to hear that your LO had to have surgery. A stoma is scary at first but it does get easier once you and LO get used to it.

Echo what PP says about weaning and clothing. Also recommend using a larger nappy size (couple of sizes up which can cover the bag more so if it does leak it can be contained to a degree). Also recommend bags which are drainable and have a filter to help disperse wind. The bag I found the best for my daughter who had a colostomy at 5 weeks is the Dansac mini easifold drainable - it's a mini adult bag but has proven to be the best in terms of leakage. Pre weaning I usually had to change her bag every 2-3 days so it was really good - post weaning I do it every day as the solids tend to penetrate the seal more easily.

When changing the bag I gently remove it and clean the area with fragrance free baby wipes and then dry it really carefully with a square of kitchen towel. Whilst doing that I have the ready cut and folded bag under my arm to warm up the seal. Once I have positioned it over the stoma I press around the seal very carefully and when DD was younger and smaller was careful to stretch her leg out so the seal sat properly around the crease of her thigh and then hold my hand over the seal for a minute or so to warm it into place.

Outfits were baby gro's for a long time and now I still avoid waisted clothes. It becomes second nature after a while and in some ways once you have got used to it is almost easier than changing a dirty nappy!!

The hospital should put you in touch with a stoma nurse to help and advise you. They can also give you bag samples to try and recommend creams to use if the skin is irritated.

As PP said feel free to message me too if you need anything. It's a real shock when it first happens but it does get easier I promise x

thanks so much for your advice Rachel and shhhsantaiscoming You have no idea how relieved i am to have found this site
Stoma nurse off til next weeks so cant get any advice till then

Think i will stick to babygrows for a while the problem with ds is that he has lost so much weight that he has no skin he was 7lb10 born 11wks ago and he is only 8lb5
His stuff coming out of stoma is so runny it leaks and hes no fat to protect skin His poor skin is so scalded ahhhh
They have put thickening gel into formula and this is starting to help but like all things takes time
They have him on TPN and only 40mils as he is having too much output they will scan during week with die to see how he is obsorbing foods. Doc said he only obsorbing 50% of food so this will take a couple of weeks to fix. Today was his first weight gain in weeks went up 2oz not a lot but yipeeee a start

really loving this forum thanks all for sharing really helps to know were not alone

The weight gain is a step in the right direction and I'm sure he'll be piling on the weight soon once they sort out his food. My daughter lost 12% in her first few weeks but soon gained once she had her stoma. Output for her was fairly liquid in the early days and really only started getting solid once she started weaning but once we'd got the correct bag for her leakage wasn't so much of an issue.
With his poor scalded skin your stoma nurse should be able to recommend some creams - in the meantime can you try your GP or the hospital? It does improve once the stoma settles down and the shape is more regular - you just need to make sure the hole is as neat to the stoma as possible. Now my duaghter is 10 months hers is a standard 25mm circle so I get the bags precut which makes life much easier!
Hope you are doing OK - it's not easy with a little baby with health issues but it will improve I promise you! My DD's stoma is very much part of her now and it will be very odd when she has it reversed! Do you know what the long term plans are with your DS yet? Hope the hospital have been good - which one are you under?
If you need any further advice or a shoulder please message me!
Rach x

My ds is still in hospital and the stoma nurse is not back till tuesday Ds bowel is destroyed with adhesions so it will be at leat 6mths to a year doc said they have until he 2 to sort it but they have to fix the adhesions first and because its so extensive it will probarly be more than 1 operation not sure yet. He is in Crumlin Hospital and the staff are great, he got loads pressies for christmas all make fuss of babies.
they are using oraheasive powder that was recommended by a wound specialist
How do you manage on a day to day how often do you need to empty bag do you have much trouble with bags not staying on
I really am not too stressed about looking after the stoma just keeping the bags on and leaking cause its acid that comes out too. I just want him gaining weight and coming home he been in hospital over 5wks now and with 3other boys at home it has not been easy He was also in for 2wks previous so hes spent more time in hospital than at home.
rachel really appreciate advice as you know nothing better than chatting to someone in the same boat where do you attend with your daughter and where do you get bags pre-cut sounds brill

Hi Sammy
Sorry for the late reply - I've been ill over the New Year joy!
Sorry to hear DS is still in hospital - I know how hard it is when you have other children and are torn between hospital and them. Hope the stoma nurse has been helpful today. Sounds good that they have a plan and time scale to sort out his bowel issues - it's tough putting them through operations when they are so little - my DD has had 6 GA's so far - but I just keep telling myself it's for the greater good and she won't remember it. Hope they can minimise the surgery needed.
Have heard of the oraheasive but not used it so hope it's doing some good. Once he's out of hospital the stoma nurse should arrange for you to be able to order supplies directly from a supplier. With DD I just phone up with an order and they then contact my surgery for the prescription - so fairly easy. Once you are happy that the size of the stoma has regulated you can then ask them to precut the bags for you.
In the early days I just emptied the bag with each nappy change as we had a problem with the bag ballooning with air - this was helped by changing to a bag with a filter. Leakage was variable but as I got more used to fitting the bags it lessened. Now she's weaned I change the bag daily as it's harder to empty and the seal doesn't last as long. We get the odd leak but it's not too bad - you just sniff your child in a different area to other Mum's doing the sniff test!!
My DD is doing well thanks - she had the colostomy at 5 weeks at St George's in London and has since had anorectoplasty to create her proper bottom and is now waiting for a colostomy reversal so she can start using her new plumbing - that's the bit I'm scared about - the stoma is much more straightforward than what is to come!!
Really hope your DS comes out of hospital soon and do post if you need any advice.
R x

hi rachel
thanks for reply hope your feeling better that must of been hard 6GA good job our babies are so young they wont remember. Its a lot with the stoma reconstruction and now the reversal to still face bet your a really strong mum. I have done a lot of reading on net and i read somewhere using olive oil on bum for a month or two before operation create a protective layer as bum not used to poo cant hurt. I think these sites are fab for getting help and support from people living the same things did you join Esp i still waiting admin to accept me.
The oraheasive powder is amazing really cleared ds skin wow. Nurse recommend i use syrnge to drain bag as its thicker and stickyer as they putting thickening gel into formula. The filter bag sounds good ide have same problem with bag ballooning though i make a joke to oldest boy 12 he can fart on demand if we want to get rid of anyone Really lightened the subject when we had to tell him what had happened his lil bro
Really hope your ds continues to do well
thanks again for advice really helps xxx

Hi Sammy,

Nice to meet you. First time in a few weeks that I looked at this site. Great that your DS's skin is healing up. We had the same problem with our lo's stoma after her last stoma revision. We have started to use EAKIN slims barrier rings around the stoma. They are these putty rings that you fit snuggly right around the stoma and then the bag sits on top. Ask your stoma nurse. We found that helped the problem with the sore skin a bit. We also used Ostoseal which is one of the powders with aloe vera in, that seems to help as well. Our daughter is now 9 1/2 months old and we have to change her bag every day now, as poo starts to seep under the bag very quickly. I could not have imagined doing that at the beginning, but we're used to it now. For the first few months we used the Nova Dansac paediatric drainable pouches, which we found good. They don't have a filter, but you can get these carbon filters from Coloplast, which you can put on yourself and they help get rid of some of the wind. For cleaning we use dry wipes that are supplied to us and water, as well as Appeel adhesive remover wipes. We get our supplies from a company called Securicare, but whoever is your supplier will be able to help. If you would like to try some of the products I mentioned, I can always give you codes if you have trouble getting hold of them. Any questions, please ask. We used to get really stressed every time wi had to change her bag, but it will become second nature, rest assured. Good luck with it all.
Krautmum x

hi krautmum

nice to meet you to the stoma nurse in hospital is using the rings and uses them to fill the gaps like putty seems to really work. The nurse actually cuts the bag bigger around the ring instead of the stoma again seems to work sounds like what you use. Having a much better time and thanks to this site and Babycentre.com chatting to people has really helped. I changed the bag for the first time today with nurse jesus i was sweating, but was so chuffed with myself when i finished. The filters sound great how long is your daughter going to have it for. Lucas is doing a little better except for bug he caught in hospital. they are increasing his bottle from 40mls to 60 today and hopefully monday they will start decreasing TPN.
Do you manage to get out much with your daughter i have read so many people saying they cant go out in case it leaks. So ive invested in waterproof seat pad for car seat/ buggy and pampers mat for accidents when out . I figure if im prepared with extra supplies in car ect should be fine. Lucas wont be out of hospital for a few weeks so i hope ill be more confident changing bag by
then.
thanks for your lovely reply great to have people to get advice off and do not feel so isolated
xxx

Hi Sammy,

Great to hear that you're managing to keep that bag on a bit longer. I'm sure you'll be a pro yourself very soon.

We're not sure how long our daughter will have her stoma. The plan was to have it all reversed by now, but things are taking longer. Her new anus (after anorectoplasty about 5months ago) has still not healed up properly and may need further surgery to make it bigger. Until they are 100% happy with that, they will not close up the colostomy. So the waiting game continues.

I must say we haven't really been away much since our lo's been born, for fear of leaks and not wanting to have to change the bag somewhere else. It's difficult enough at home where you're all set up for it, personally I can't imagine doing it in some public toilet and also having to deal with them being full of poo. Having said that, you can manage going out if you prepare yourself. I suggest if you go out for a whole day you make sure you change the bag in the morning before you leave, so the likelihood of it leaking is much smaller. I would also make sure you have a pre-cut bag with you, so you're as ready as you can be to change it if you have to. The LBF wipes combine an adhesive remover & skin barrier, so make things a bit quicker when you're out. Also, we normally have this zinc oxide tape (from pharmacy), which we use when the bag starts creasing/lifting off at the edge. We just tape the offending bit down and it prevents the bag from leaking a little longer, should you not be able to change it straight away. These are just a few things I can think of, but you may find other things work better for you. Hope Lucas will get out of hospital soon. Krautmum xxx

hi Krautmum

Sorry things havent gone smoother with your daughter its such a waiting game hope all heals up soon and you can have reversal
Thanks for the advice on going out cant imagine ever being comfortable changing bag at home never mind in public. Was suggested by nurse to change bag every 2days to prevent bag leaking.
Lucas feed is not going well having way to much output so have dropped his feed back down to 50 its so frustrating.
So cant see doctors taking TPN off i just want him home its so hard with 3other boys at home. Now to top it all off the swine flu in hospital so only parents allowed in hospital so cant get mum to help me out with visiting as hubby in work
Sorry for the rant but have to off load somewhere xx

HI Sammy,

I can understand your frustration. It must be really hard with 3 other kids at home. We only have one more, he's just over 2, but no mums nearby so it's always hard to organise everything around a hospital stay. Luckily we never had to be in for that long.

I hope things will improve for you soon. What exactly is your lo's condition? Is it something that should be all good at some point? We're so used to the colostomy now that I sometimes worry more about what it will be like after the reversal, as that is a complete unknown...

All the best and stay positive :)
Krautmum
xx