Baby Stoma - Searching for mums who've been through/going through this...

[mrshippy]

Hello

My 4 mo DD had a colostomy op two weeks ago. I would really like to get some info/advice/ support from other parents who are going through/have gone through it with their babies.

My partner and I just throught we had mastered the whole bag cutting thing and this morning DD has a little white 'blister' on her colostomy where it has been rubbing her. She is such a wiggler that when we cut the bag as we've been told to, it rides up and rubs the bottom of her colostomy as she draws her legs up. So now we have cut the bag bigger and have more skin exposed. I've reached a point where I would really like to talk to other mums about this and other issues.

I've trawled the net and the only charity that I've found for mums of children with colostomys has closed.

Anyway, if there's anyone out there who would be willing to have their brains picked by a slightly anxious mum, who's new to this and wants to do everything she can to keep her DD's colostomy healthy and comfortable - please post here!

I've not been through this but wanted to say welcome -if anyone can help answer your questions it will be someone on here!

If you don't get any replies now don't worry (lots of people making dinner, bathing children etc) so just bump this thread later this evening and at different times during the week and someone who can help will see it.

Thanks BettySpaghetti

Will keep bumping.

There's a poster called PurpleLostPrincess whose daughter has/had a stoma. She's not always around though.

Welcome

bumpity bump

have you tried asking at the hospital they might be able to help? Have you thought of calling Gt Ormond Street/Liverpool childrens whichever other big childrens hospitals and asking for their stome nurse (9-5 MON-FRI 0bv.)and asking them if they know of any support/web sites/other Mums who are happy to chat? Have you looked on American websites? netmums any good? (I don't use it but it is another one I know of) Have you googled her particular condition to see if it's site is any help?
There is a website for rare inherited conditions might be something on there, I can't remember the name but might beworth asking in health/special needs and seeing if someone else can.
Good luck sound like a trying time for you and your dd, hope things go well for you.
Oh and kep bumping someone will be along soon who can help more then me!!

Thanks 1dilemma and Saggybumandnorks (can so relate to that username)

I do have a colostomy nurse to go to. She seems very experience and is kind but I feel like I annoy her. She was my point of contact before DD's op and I got in touch with her about my concerns about the op and my DD having to go nil by mouth etc, then about her being ill. Although I held it together in the hosptial 99% of the time, when I did finanlly crumble, she saw me get quite upset etc. In a nutshell, I feel like she thinks I'm a pain in the bum, would love to listen to experiences of other mums.

Have you any contact with the Stoma Nurse Mrshippy?

Mrshippy - DH is what they call a "pouchie". He had a temporary ileostomy due to ulcerative colitis and then was given an internal pouch.

He does a lot of work for the York IA and also the organisation nationwide.

He is away this weekend in Edinburgh, but I have just contacted a pal of his from the organisation and he has forwarded this website for you -
www.patient.co.uk/showdoc/26739177/

I hope this helps.

(I know from his experience with a bag - there are different companies that supply slightly different bags, wipes, adhesives and sprays etc) so it may just be a case of trying different things.

DH is back tomorrow evening. If you are no further forward - would you like to cat me with your e-mail address and I know he would be only too happy to help if only to give you names of different suppliers)

Hi Mrsshippy, when you cut the hole in the colostomy bag, it is wise not to cut it too large as faecal fluid can really irritate the skin.

If you gently draw your little ones legs down so you get a nice straight tummy to put the bag on, you might get a better fit/seal.

Make sure you have cleaned and dried around the stoma site before putting a new bag on. Also, make sure you have cut a ready supply of bags, so if you do make a mistake putting a bag on, you do not panic and have another one ready to put on.

Please, please contact your stoma nurse if you have any problems/concerns. That is what she is there for. I bet she does not feel you are bothering her.

I only looked after adult patients with stomas, but I did not mind being asked a hundred times how to do things.

Good luck with your little one.

Mrsshippy I've just reread my post and think I sounded a bit bossy sorry I didn't mean to be I was in a hurry to get some ideas down but had to go and quell a miniriot before I could say 'here are some ideas etc'
The stoma nurse is (partly) there so that you can 'bug' her so go for it.

Hi Bellavita - Thanks for that, that's very kind of you and I will check out that website now.

Hi cheshirekitty - You've said exactly what our Stoma nurse has said. The problem is that our DD kicks and curls her body and as she does that the bag rubs into her colostomy, even though we have fitted it as we should. It seems like the bags just aren't designed well for wiggly babies. The bag we've got on this morning has a huge hole in it, but we don't know what else to do because if her blister doesn't heal then we are worried are colostomy will get infected.

Could I just ask if you know anything about alternatives to bags. I've heard about people using a gauze under a nappy. I don't care how much of a faff it is so long as her colostomy and her skin is healthy. Have you heard of anyone using an alternative to bags?

Have also just mailed the nurse too.

1dilemma - Your post didn't sound bossy at all! I've emailed her now anyway.

Our DD is so lovely, I really hope we can start to feel confident about her stoma care at least before she grows up and we've missed out on enjoying her babyhood because of all this hangin over us.

Feeling a bit miserable again today. We thought we were doing so well

mrshippy, have not heard of using anything but a stoma bag, but I have only nursed adults. You can use paste, but it gets sticky etc and may hurt when you wash it off.

There are loads of products out their now. Just keep on at your stoma nurse until you find one that is good for your dd.

Is your stoma nurse a paedaedtric stoma nurse? Maybe she needs specialist help.

Sorry cannot be more help. Wishing you, your dd and family luck.

She is paedaedtric. Thanks anyway.

Sorry Cheshirekitty, my last post sounded a bit short. My toddler was grabbing the keyboard.

We decided to ring the ward and get some reassurance over the phone. As we live quite close to hospital a nurse offered to have a look at her colostomy. She said it looked fine and when we took the bag off, the blister had heeled allot in a day!

She refited the bag and I thought it looked rather tight. We decided to change it as it looked so tight and when we got it off, it had two new blisters because she'd fitted it so tightly.

I'm a bit cross, but at least we know that the professionals can get it wrong so we don't feel so useless.

I think we'll just stay in touch with the colostomy nurse instead!

Many thanks for your support.

last few bumps

Mrshippy - have you asked Stoma Nurse if she knows of anyone in and around your area if there are any other babies with stomas?

My DH did a Visitors Course, so when there are patients or relatives that have any concerns about their up and coming op or if they have had the operation and they just need some reassurance, the IA put them in touch with various people like my DH - they try to match with age etc, but sometimes it is not always possible and he will speak to them on the phone or if they are local he will meet up with them.

Did you have a look at the website?

mrshippy Hellooooo!!!

I'm so glad I'm not the only one on here - big hugs to you!! I know what an awful time it can be and how stressful and difficult stoma bags can make life. We've been changing it up to twice a day lately now that she's more physically active

Cerys is now nearly 5 months old and had her colostomy done at 3 days old and I remember going through exactly what you're going through. As far as I know, because it is literally bowel, it doesn't have to be sterile and I'm sure it can't get infected (although I've worried a few times myself too!).

Cerys's stoma is quite low down and so we struggle with the sticky bit that goes over the top of her leg - sometimes I trim the edge off the circle bit so it doesn't rub as much, have you tried that? Also, we were told about the 'powder' but we never used it until recently and it seems to really help in keeping the bag sticky. Here's what we do, it could be exactly what you do but if you need to ask any questions I'd be more than happy to help!

*Use the 'appeel' spray to remove the bag (lately its been hanging off as it has leaked!).
*Have a bath with not too much bubbles (not every time).
*Wipe all around with the adhesive removal wipe to remove any residue of sticky stuff. If I need to do a new template, this is when I do it; letting her have a kick around and its a good opportunity for air to get to it.
*Cut out bag, put it under my arm so my body heat warms it so its soft. (keep it there till its time to stick it on).
*Apply cavilon with the lollipop stick - lots and lots! Let it dry while DH is holding her legs down and distracting her.
*Apply some of the powder stuff (have only tried it a few times but seems to help).
*Stick bag on.
*Hold hand over it so it stays warm which apparently helps it to seal to the skin better.

Like I say, you're probably doing most of this already if not all but some of it didn't come from any professionals I was in contact with 'officially'. I happen to have a close friend who is a nurse and gave me some tips which really helped, like keeping the bag warm etc. I would agree that the bigger the hole, the more red the skin gets as its in constant contact with the poo - making a new template isn't fun though so I know what you're going through. My heart still pumps like crazy when I'm doing a new template which is every week or two and the shape of the stoma changes so often (not sure why!?).

Its strange but I hadn't spoken with anybody who had been through this until the last few weeks and now I seem to know quite a few people - they are out there! I recently joined 'Extra Special Parents' which is a forum started by a lady whose little girl had an imperforate anus like Cerys. The site is private though which is why it probably didn't come up when you've done searches (me too!). I found that very reassuring though. If you google it and apply for registration I'm sure you'll find it helpful - our story is on there too!

Better dash, Cerys just woke up! Remember, just ask away and if I can help I will, or at least I'll try!

PLP xxx

Mrshippy, I know someone who might be able to help you and have pointed her this way. (Sorry I can't help myself).

She's here already, hi plp.

Goodness me, that was a long one, sorry!

I meant to say that we do have a local stoma nurse in B'stoke but all our contact has been with S'ton hospital and I found the surgical nurse from Neonatal was more help than anybody else that we came into contact with.

Oh, and I leave about 1-2mm of space around the stoma to allow for moving around etc but its never perfect. I used to think it was hurting Cerys but I've been told that there are no nerves etc there so it doesn't hurt them. I know it seems silly to stick something over what looks like very sore skin but it does help in the long run...

Ooooh, thank you so much kinki! ((hugs)) xx

And hiya saggy!!

Hello PurpleLostPrinces!!!!!

I'm so happy to find someone who is going through a similar thing. I've felt very alone with it all recently.

Reading your post, where pretty much doing the same as you with the bags, except I haven't heard of the 'powder'. We're trying really hard to get her bags on well but we are finding it hard. Even when we seem to have got them on well, they seem to move a bit. Last night we trimmed the bag to stop the edge rubbing on her colostomy when she kicks her legs, that seems to have helped a bit.

I'll tell you our story...

My DD was a home birth, I had a difficult medical birth and feeding problems with my son (now2ys 9mths)and DD's birth was lovely and she fed straight away. We were chuffed to bits. She was handled nearly every day by a midwife. On day three I was at home on my own witrh her, changing her nappy. She was doing a very big poo basically and it looked like it was coming out of her vagina. I waited desperately for a MW to tern up and tried to convince myself that I was just not used to changing little girls, but I couldn't find a bottom hole so I knew there was something wrong.
The midwife came and called a doctor. The doctor cam and sent us to the hospital and told me to stop feeding her incase they needed to operate on her straight away. We arrived at the neonatal ward and she literaally ripped from my arms, stripped down and put in an incubator in the high dependancy unit whilst they assessed her. It was so upsetting to go from theis magical, calm time at home together to this. She was diagnosed with vestibular anus. Basically no bottom home yet a small opening tucked under her vagina that was sufficent for now. They put her through allot of other tests and didn't notice anything else. We were allowed to take her home and treat her normally until her op on the 14th. She needs another two, reconstruction the colostomy reversal - and thats if things are straight forward.
We've tried to be as positive as we can and enjoy our time before all this treatment starts, but I've found it hard. I don't know anyone else personally who has had any problems with their child, let alone one like this which is uncommon (1/5000). Hence feeling a bit alone.

Anyway, I'll stop before I write another 10 pages!

I will certainly be looking for that website that you have joined. I am amazed how little there is on the web in terms of support for this kind of thing.

Can I just ask, with the colostomy bags, have you managed to get a snug fit yet without blisters or are you finding that cutting a bigger hole is better? Also, have you een give the bags with the little bear prints on the front?

Lovely to get in touch with you x x x x x

With

Sorry about the terrible spelling/grammer. I just typed that out at super-speed!

Bless you mrshippy, that must have been such a difficult time for you. Its so hard isn't it and yes I felt very alone before meeting anybody else who'd had anything similar. I'm just a bag of emotions now (gp thinks its depression but dh and a few others think it could be post traumatic stress).

Cerys is my third child and everything went well with DS and DD1 so the last thing I expected was this! I had 2 m/c's before her and a very difficult pg but it was all worth it! When she was born, nobody noticed that she didn't have an anus including the nurse that delivered her AND the paeditrician. I even showed the discharge nurse as I couldn't see an actual hole and she said it was just below the vagina and not to worry . Strangely, she did do a tiny little poo that must have come out of her vagina but that was only once and her consultant insists she hasn't got any fistulas of any sort - I'm convinced there must have been one but it grew over.

It wasn't until she was 3 days old that she was so jaundiced that the midwife said she needed to go up to our local hospital. I showed her the lack of anus and she made sure a consultant took a look at her - her tummy was distended and they immediately put her on a drip/antiobiotics etc then she was whisked off to S'ton and had her colostomy done within hours. When I look back, its frightening to think that she could have died and I kick myself that I didn't realise how ill she was - I just thought I had a moany baby . At the time, her heart condition was picked up on but she didn't need treatment (did they check your DD's kidneys, spine and heart too, something called VACTERL?). She was scheduled to have her reconstruction done early November but a few days before that I noticed she was breathless and sweaty and not well - its a long story but she ended up having heart surgery the next day aged 9 weeks.

So, she had her reconstruction done in December (aged 14 wks) and we're due to have her reversal on 19th February. It's been a long road and its not all over by a long shot but I do feel like we've been through the worst of it (I hope!).

I've got so much more to tell you/say and ask/discuss!!! Must dash for now as DH has his clinic appointment and it always takes me ages to get ready!

TTFN PLP xxx

Right, I'm home and have a little bit of time before she wakes and the school run kicks in lol!

Yes, we've got the little beige bags with the teddy bears on the front (our suppliers are Pelican). DD1 puts her own stickers on them to 'pimp' them bless her - she has kept a couple of special ones for Cerys's last bag before the reversal. As I say, I just allow about 1-2mm's space when I do a template and find that it seems to work. We do get the blisters but they don't seem to bother her at all but thats not to say I didn't worry myself sick about it at first too.

They told me a bag should stay on for about three days but it always used to leak by the second day (if not sooner) and she seemed uncomfortable too so we did it every other day. At first, I needed my parents to come over every other day to help and it was a massive thing but DH has now got the hang of helping and its much more low-key. On reading other peoples experiences, we've got away with it really - I've heard some people changing bags every six hours!! We've had days where they've leaked every couple of hours and we've changed three or four times too.

If you want to try the powder, just ask your supplier when you next ring for supplies and they should just send it through and send on a prescription thingy to your gp...

Hope that helps

PLPxxx