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 Sammy,

Thanks, I heard that about putting poo on their bum as well. Will give that a try, as I heard the nappy rash gets really really bad...

I have also heard of this cream from the US but can't remember the name or anything. If you could find out details for me that would be great! Also, any other tips for keeping that bum healthy from someone who's been through it already are greatly appreciated!

How's Lucas getting on? Do you know when you will be able to take him home? I hope the waiting for tests will be over soon and he keeps improving.

Speak soon
Krautmum xxx

thanks shhhh and all.

Hi all

Sammy - ESP takes ages to OK membership. I joined and waited and waited and then didn't really use it in the end. I am a member of the VACTERL site as DD was also born with heart and renal issues - it has a really good forum for support with IA issues.

The paste from the states is called Ilex paste www.medconbiolab.com/ - have heard great things about it and the best way to use it from people on the VACTERL site:
'when you have put the ilex on you need to completely cover the ilex with a very generous portion of vaseline - if you dont then the ilex will stick to her bottom so just pile it on thick all over.
when it comes to changing the nappy you will find the poo has stuck to the ilex which is on her bottom, now i know this doesnt sound the nicest or the most hygenic but you need to remove any excess poo that you can but making sure "not" to take off the poo that is stuck to the ilex or the ilex itself. the poo is in no way touching her skin it is only touching the ilex and the ilex is giving her bottom the protection it needs so just leave it all there. if you need to apply more ilex in other areas then do so and add more vaseline to it too - disp gloves are a winner for this!!!
i does take a bit of getting used to but it really was the only thing that worked for us and everyone that has used it.'

Have also read that a bath at the end of the day is the best way of getting it all off to start again. Also read that supplies from the States can take up to 4 weeks so order early and recommendation to order tubs rather than tubes as more cost effective.
I think GOSH has Ilex on prescription is anyone is under them and it's worth asking your GP or consultant if they can get it for you.

Krautmum great news that your LO has a date for her reversal - really hope all goes well with it.

Rach x

hi rachel ye i applied in december as i read on this site its great really is bad that they cant be bothered emailing back was just wondering does anyone else having this problem. No idea how much longer lucas will be in hospital as output too high and he on TPN 18hrs a day.

Krautmum I read using olive oil to remove and put as base on bum works well i got a lot of info on babycentre.com really great bunch of ladies helping each other out any problems pm me and ill be happy to help. ill chat to mum in next bed but i also have another friend i met in hospital last week baby had reversal and we swapped details.

Hi,

Thanks Rachel and thanks Sammy for advice. Have also heard that you should clean with olive oil rather than water. I guess it will be trial and error for a while...

Speak soon
Kx

My daughter had a stoma at 8 weeks (on New Year's Eve, no less) and is now 13 weeks. We are getting on ok with it.

I've just seen this thread, and don't have time to read anything until after I've picked up ds from school, but I'll read and post properly when I get back this afternoon.

(Hi Rach! [waves] [runs out door])

Hi KiwiKat [waves back] great to see you on here. How is DD getting on?

Rach x

And now I'm back, and have read the whole thread. We all seem to have rather different health issues to deal with, but the same things came up often through the threads - being completely freaked out when you first found out about the LOs needing a stoma and having to learn to look after it, then after you'd been doing it for a while, seeming to be quite matter of fact. Rachel will tell you that I was a real mess when I was in hospital with dd, but have now got my head around it, more or less.

DD was born with jaundice, and was readmitted at 1 week for ultraviolet light therapy. She had to have a nasal feeding tube, and I cried because it was 'so invasive' - HA! Little did I know what lay ahead ... When she was 6 weeks old, after I noticed her pooing through her vagina as well as her anus, she was was diagnosed with a rectovaginal fistula, which is so rare in babies, that the surgeon had never seen one, and his boss had only ever seen two. . On New Year's Eve they gave her a stoma when she was 8 weeks, with a view to operating on the fistula in March/April when she's bigger, then reversing the stoma 6-8 weeks after that.

Being in the hospital over those 5 days was invaluable. Everyone was saying how wonderful it was now that she had a stoma, and that she would be much happier/healthier, and I was completely freaking out about her having AN OPEN WOUND IN HER STOMACH. I got all pale and trembly when I had to change the bag, and was very teary. But I spoke to many other parents whose children had stomas, many of these kids with conditions significantly worse than my daughter's, and some much more painful or dangerous as well, and I realised that my attitude needed to change if we were going to live with this.

I got great support from those other parents, the stoma nurses, people like Rachel on MN, and gradually stoma care became just one more part of our daily life. DD is now 13 weeks, and is a happy wee thing. We are bloody lucky that I picked up what was wrong so early, and the other big plus is that she won't remember any of this - it will just be a story about herself that she will hear when she's older. This thread is brilliant, and I hope that I am able to give back some of the support that was given to me when I needed it - and will no doubt continue to need it at the various stages of her procedures.

KRAUTMUM i spoke to parents next door and they said they just using ILEX they havent had any problems with it they said they wouldnt try olive oil as they think it would burn guess its what you say Trial and error.

Kiwikat welcome again glad to see you finding this forum useful they have saved me when ive been so stressed.
Only on for a few mins chat later xxx

just wanted to let you all know lucas CF test came back normal so he hasnt got it yipeee. They now think he may have NEC will have to read back on posts i know theres quiet a few of you that have babies with that. We will hopefully find out 2mor

Hi Sammy,

Great news about Lucas not having CF, let's hope you get positive news re: NEC as well.

Spoke to our stoma nurse today. She didn't think putting poo on their bum would do any good really (she said they used to advise that) but I suppose every hospital does things slightly differently. She did however agree that the Ilex paste is supposed to be great, but unfortunately they don't do it at present. Looks like we have to try and buy that ourselves. But then she said she said she had good results with Orabase paste and Cavilon spray too, so we might be fine with those.

Counting down the days now... Hope other things won't get in the way!

Good luck and speak soon
Kx

we were told to order ilex cream on the internet but its supposed to take a while so if you order email them about delivery. I emailed them on delivery coast to ireland and got a pretty quick reply. On the poo on bum the nurse that looks after all the babies with reversal not stoma nurse recomended it as she said she is the one that looks after them all day not for the odd change. Stoma nurses are brilliant but they are not there all the time. The 2 stoma nurses recommend it to say children blister when not used to poo nearly burn. Worth trying i think as long as you are careful was suggested to put on every 2nd day for 10 mins then everyday. Have seen a good few with Cavilon spray and they were still pretty sore but dont know if they used anything else.
Lucas showed more blockages in the upper bowel near colon surgeon said wont know if its NEC until they go back in and and take biopsy but very likely he said. good job he has stoma really.
chat soon hun xxx

KiwiKat it sounds as if you and DD are getting on really well after all of the stress and trauma over Christmas. Hopefully by the summer it will all be a distant memory.

Sammy so pleased that the CF result was negative that's great news. Hope it is good news on the NEC front too.

Krautmum fingers crossed your LO gets her surgery as planned.

Big hugs for all our amazing babies. Ella turned one yesterday and after such a roller coaster of a year she still amazes me with her uncomplaining tolerance of all that she has been through :) If it is possible to over kiss and cuddle a baby then I am totally guilty - I just love her to bits!!!

Rach x

Hi Sammy,

Thanks, maybe we will persist with the "poo on bottom" then, seeing as that seems to help. We're getting a couple of tubes of Ilex sent over through a cousin of my other half in Canada, which will hopefully work out quicker and cheaper, but will have to see what we do in the long run. We will need lots of it , if it works no doubt.

How is Lucas getting on with his feeds? Sorry to hear they have found more blockages, it's horrible when they find more and more things.

Rachel, thanks, we hope so too, although getting very worried about time after reversal now. If lo needs nappy changed 20 times a day, I don't know what I'll do with my 2 year old... We'll just have to see and hope for the best.

Speak to you all soon
Kx

Hi krautmum wonder how much ILEX cream we need to order reckon it will be prob be used for a good while
Really think your right to try poo on bum cant hurt you must be getting nervous about reversal. Loads of parents have come and gone with reversals in Lucas ward as he in a GI ward. All seem to be in and out in 5-7days seems to be waiting for them to poo after operation hardest part as not allowed feed them until they do from the parents i chatted to 2-3days to poo. And when they did everyone knew it cause they dancing around with poo nappy ha ha photographs out . Will so be me to lol Dont forget if you need me to ask questions to parents or stoma nurse ask me and ill find out for you. So excited for you.
Lucas is doing so much better up to 70mils and a spoonfeed babyrice. He has lost weight from 12lb9 to 11lb12 but thats because they taking him off TPN 14hrs instead of 24 yipeee. We got to take him out Sunday for a couple of hrs was great couldnt go home as 1hr drive each way so we went to my mums. Lucas loved being around his brothers at last as Swine Flu outbreak in Hospital so they havent seen him for ages
chat soon

Hi Sammy,

It's great to hear that Lucas is doing better and not on TPN all day. At least things are improving. How old is he now?

Our little one is struggling to put weight on at the moment because of constant tummy bugs and hospital admissions. Let's hope next week will be the last one in a while and she can make some progress in that department. She's only 15 1/2 pounds at 10.5 months, so not exactly heavy.

The starving after the op sounds horrendous. I hope she will poo quickly.

I'm not sure how much of the Ilex we'll need and looks like we won't get hold if it until well after the closure. I have received the Orabase paste today and will let you know how we get on with that.

Speak soon
xx

hi Krautmum
lucas is doing much better thanks he is 18wks i used orabase paste on him when newborn as he had bleed in stools and bum got very sore and it was brilliant, Hopefully it will work as well on your lil one.
On the starving thing they said second day bad first day was so sleepy they didnt notice. The kids i met were all very thin too and were all Lactose intolerent and so is Lucas. Thats terrible that she is in and out of hospital with bugs do you have to stay in long what do they do for her. It seems to be very common for babies with stoma to get dehydrated a lot do you have same problem. There really is a lot with this stoma you think the bags are the only problem but it comes with so many more problems. I am praying all goes smoothly for your lil one and she can get on with enjoying life without a stoma.
chat soon

Hi Sammy,

Good to hear you had good experiences with Orabase, I hope it will do the job for us. I'm getting more and more worried about that side of things. She's already not overly keen on having her bum wiped, so can't imagine what she'll be like when it's really sore...

I think we've been quite unlucky with the number of times she needed surgery on her stoma. As you say, you think the bag is the only problem and before you know it there's worse. She's only been in hospital once because of a tummy bug, all the other times were for surgery. They put her on a drip as she couldn't keep anything down as was throwing up bile. She just had another one a couple of weeks ago and didn't eat solids for over a week, so the weight goes down straight away. Making up for lost time now though, she's been eating for two for the last week or so, so hope she has put on some good weight before next week!

Re: stoma closure, as you say, they're normally quite sleepy after the GA anyway, so the day after should be ok, but by day 3 she will want something to eat for sure...

All the best with Lucas and spk soon

Kx

just got this massage from friend who's baby had reversal a few weeks ago this is what she uses using a mix of vaseline/orabase and metanium and some cavillon under all that! she said it works very well
can really understand your worry about reversal its horrible waiting for them to come out of operation
chat soon what date is your lil one operation

Hi Everyone

Haven't been on MN much of late, RL has been too much hard work. Nice to catch up with you all though.

DS2 has been doing well with weight gain etc. Had the pull through op 4 weeks ago which went fine- they had to remove most of his colon unfortunately and he had a lot of adhesions from his last surgery so it ended uo being a bigger op than expected, but was still fine IYSWIM.

He had a horrible complication with his bladder and kidneys post op, was in a lot of pain for a couple of weeks . Over that now too thankfully.

We're going through the dilations business now. He's had one under GA. Next one is in clinic and they'll show me how to do it at home. He's about 9 Hagars now, needs to be 15 Hagars before he can have his stoma reversed apparently. Does anyone know what this will entail in terms of how many dilations/ how often we will have to do dilations? I'm a bit scared about them, but don't hold back please. It's best to know.

What is the Ilex stuff?

Sounds like you've all been through it recently. Glad Lucas is doing a bit better tho, Sammy. And Krautmum, we've had to starve DS after each surgery. Because of the morphine and just the after effects of surgery it has honestly been more a case of encouraging him to feed than him being hungry and distressed. And he's a greedy bugger normally!

I'm also worried about the reversal, what it will do to his poor bottom (his tummy is sore enough around the stoma),whether he'll gain weight ok or have constant diarrhea.....it's a real worry.

Rachel, I'd be happy to contribute to your website. I think it would also be nice for people to be able to contact others in their area with similar experiences. I'd be happy to do something like this if people were interested too. Maybe we should have a Mumsnet Babies with Stomas meet-up!

hi hairymelons sounds like you too are having a tough time can u explain pull through operation had your lil one got NEC. They think lucas has and his problem is colon right stick to liver so not good. My lil man had loads adhesions from first operation destroyed bowel. I cant help you on dialation but i will check the other website i do use. Its called babycentre loads on there with stoma. The ilex cream is a barrier protection paste for after reversal. I have been told to put poo on bum every second day to prepare bum supposed to really help make sure you remove after 10mins and work up to every day. I have spoke to many people in hospital for reversal and they all seem to have problems with lil ones not gaining weight.
Where do you all live im in ireland would be great if someone lived near to meet up. Your right Rachel has a great idea im sure all will help her as we all in same boat and love hearing what works.
On the sore skin with stoma i recently started using new stuff for protecting skin and its fab will check name for you but i did post about it so if you look back at my comments youll find it rushing to do school runs
chat later xxx

Hi All,

Hairymelon, I know what you mean, it takes a while for them to be aloud to feed after every surgery (we've had about 5 or 6 already), but once the morphine had worn off our little one was always desperate to have some food, so never much fun. I just hope she won't have to wait even longer this time round. At least it should be the last surgery for a little while, which helps (although I have thought that before...)

Our surgeon only does dilatations under GA, so never had to do it ourselves. Out lo only takes a 5mm Hagar at moment but he's happy to close stoma and do one more dilatation while she's asleep. Hopefully this will do the job!

Sammy, thanks for the cream advise. This makes me feel better as we won't have the Ilex for a while. Surgery is next Tuesday and lo is for once well and without a cold. I just hope it stays that way until then.

Will let you know how it went
Speak soon
Kxxx

Sorry, krautmum I misunderstood. I'm not really firing on all cylinders atm- soooo tired. Really hope all goes smoothly on Tuesday anyway :) Let us know when you're doing the pooey nappy dance!

Sammy, DS has hirschsprungs disease so the pull-through was an op to remove the part of the bowel without nerve cells (the part that doesn't function). They then go up through the bottom and attach the bowel to the anus. Then they start dilatations to get his bottom big enough to poo out of, and THEN....reverse the stoma! Eventually. Think our DSs are the same age btw, mine was born 17/10.

What is NEC?

Hi all

Krautmum best of luck for Tuesday - will be thinking of you all and hoping all goes well. Hope LO copes OK with the post op starvation - that's the bit I'm dreading as Ella is usually screaming for milk in recovery and we have to have bottles at the ready! Will be good to know that it is the last surgery for some time and you can move on to the next step of her treatment and she'll start to put on some weight.

I should really be chasing up Ella's reversal but she has been so poorly with coughs and colds and 2 episodes of bronchiolitis over the last few months - both of which saw us in hospital because of her heart issues. I just want her to be well before we put her through the next surgery. Feel guilty though that I'm not doing the right thing but she is happy and healthy (apart from colds) so just hope I am doing the right thing.

Sammy so glad to hear you got to take Lucas out and about for a while - must have been so lovely to have a taste of normality. Fingers crossed he can come home soon.

Hairymelons sorry to hear your LO has been having a difficult time. I hope the dilatation go OK - our surgeon does them under GA but when Ella was very small and had a fistula they dilated it initially to see if they could avoid doing the colostomy and got up to the Hagar 10 - the dilators look quite gruesome but Ella coped OK with them at the time. I hope it goes OK for you and your LO isn't too distressed by it.

This thread is great - I popped on yesterday when I couldn't get hold of our stoma nurse - for advice on the best cream/powder for sore skin around the stoma and have ordered some Ostoseal thanks to Krautmum's earlier post!

I'm afraid the website wasn't me - have been trying to find the post where someone mentioned it before but can't. Echo the idea for the Mumsnet stoma support group though!!

Rach xx

Hi all and thanks for the good wishes. Only 3 bags to go if all goes well :) Have worked out that I must have changed her bag about 200 times, so feels very strange to think I won't be doing it anymore so soon! Well I believe it when I see that little scar on her belly...

Rachel, we had the same problem with our lo, constant colds, chest infections and then the tummy bugs. She has a VSD, which is probably the reason for the poor immunity. They're still not sure if they have to operate on that or not. What heart problems does your little one have? We spent so much time worrying about her not being able to have surgery because of illness, which makes it all even more stressful.

All the best to you all
Speak soon
Kx