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!

Oh no. poor you & poor DD. The set backs are so hard to take, you get all psyched up for the actual procedure but there's no preparing for this kind of thing. Hope you are both back home very soon.

We've been having problems with leaks again. When his skin gets sore it gets really weepy and nothing will stick.

We wash him, dry it well (lay gauze over it to soak up moisture); put the barrier wipe on and let that dry; put orahesive powder on; then stomahesive paste then the bag.

The stomahesive really hurts him so we tried the pelican paste instead but I can't get it to stick to his weepy skin. I also couldn't get the eakin rings to stick to his skin. I don't know what I'm doing wrong.

Do you cut the bag to the same size as the eakin ring? I didn't but found the eakin ring made a ridge and the bag didn't stick well to the skin. I haven't even attempted the 2 piece bags yet!

I'm probably being really dense, I can't seem to work the simplest things out for myself atm. Tired, I think.

BTW, DS has 2 stomas next to each other, is that the same for everyone?

We're on our 3rd bag since this morning and other DS is poorly so I can't wait for DH to get back from work!

Wishing a speedy recovery for DD, krautmum xx

Hairymelons sorry your having such a rough time with bags but if you look back at my posts i was having 7 plus leaks a day and that was with stoma nurse doing it and nurses in hospital. I really was at the end of my teder so upsetting. For me the prepi wipes are what makes the seals stick you can even feel it sticky skin do you have access to skype you could pm and i could chat to you. Lucas has 2 right beside each other so i cut bag to go around stoma but it doesnt need to be exact fit if you get ring round properly. put orahesive powder on then wipes powder makes it hard to stick by the way. I dont use orahesive at all so try to without and fill holes with pieces of rings. Did you get belt for bag i feel that really helped too and the orbagel thicken the output so you doesnt leak. Really hope that helps hun.
Krautmum so sorry to hear your lil one having such a rough time hope it settles soon. What horrible luck Not having much luck myself Lucas caught winter vomitting bug so 10 steps back again. So hard feel like im missing out on so much my lil man is growing up in hospital and i miss him so much. Its such a journey 1hr to and from its exausting but he is so worth the journey. He is such a good humoured lil man always smiling so i am lucky really. He hardly ever cries so he keeps me strong
hope all well xxx

Krautmum I'm so sorry to hear LO ended up back in hospital - so unlucky to catch a bug just after surgery when she was doing so well. Hope she picks up quickly and is back home again soon. Sammy also sorry to hear Lucas has been unwell too - this time of year is rotten :( My DS has chickenpox and I am just waiting for Ella to come down with it too - last thing she needs at the moment - so we are confined to home and all climbing the walls.

Hairy sorry to hear you are having bag problems too - sounds as if sammy can help with suggestions - must be difficult with 2 stomas to deal with.

Hope everything improves for everyone soon xx

hi rachel how you doing must be having cabin fever hope ella catches a break and chicken pox skips her xxx

Hello everyone :o I've not caught up in so long it's taken me a while to read back through all the posts.

Krautmum Yay on the reversal and poo and BOO on being back in hospital with the bug. The same thing happened to my dd after the second pena procedure, I guess in a ward of poorly children it can be difficult to avoid.

We used orabase on dds bum and it was great also lots of air. (We've got cream carpets so I went to homebase and bought a groundsheet incase of any accidents.. :).

Hope all your babies are doing well.

DD had her outpatient appointment at GOSH and......NO MORE OPPERATIONS... Yipee..!
The second op was obviously much better than the first and our dialatations are now finished..Whats more DD knows when she is doing a poo because she runs in and says "eurrrrgh" and rips her nappy off (thank god for ds making such a fuss about the smell) :)

We have to see an orthapedic surgeon about dds legs..Which in my opinion are fine, but the creases are uneven. She doesn't limp or stagger and she bears weight but we will see what they say. Its usually a sign of hip dysplasia but my gp thinks her hips look fine.. Those of you with vacterl babies...Could this be a vacterl association ??
Possibly spinal?

Anyway hoping it's nothing but apeasing the health visitors anyway :)

Big love to all of you and your special babies xx

hi sugarbea thats great news no more operation hope all goes well with legs xxx

Hi sugarbea

Good to hear from you and yay to no more operations!!! Great that DD knows when she is pooing - that's such a big hurdle to overcome.

The common VACTERL spinal condition is tethered spine which I don't know a great deal about but I'm guessing it's more to do with issues with movement and sensation below the spinal area. Do you belong to the VACTERL site - there are members on there with children who have tethered spine who might be able to advise.

A friends daughter was diagnosed with hip dysplasia at age 1 and has been receiving treatment over the last few months. When laying down and stretching her legs out I think there was a visible difference in length - she was diagnosed pre walking. I can give you more information about what she has had done if you need it. Hope the surgeon gives her the all clear.

R x

Thanks Sammy and Rachel xx

She had a scan on her spine when she was a few days old and in scbu and we got the all clear.

What treatment did your friends LO have? From the research i've done, she would be too old for the harness now and would need surgery. She started walking at 10 months and we haven't had any other sign of a problem. The health visitor noticed a difference in length but the 3 gps couldn't.
She was referred nearly 8 weeks ago but i'm waiting on st georges again for that one. I'm probably blacklisted

Hi All,

We're finally back home again since yesterday afternoon. Lo is still very tired and subdued and not really into food, but let's hope she perks up soon. Soo skinny after all this...

Her diarrhoea is the worst I've ever seen. We changed her nappy about 25 times on Sunday and about 20 times Monday and Tuesday. Quite often you're changing her nappy and the minute you have cleaned her up, there will be more, and this could go on. You just can't actually keep up with it and she probably has some poo in her nappy most of the time :( the only surprising things is that her bottom hasn't been completely eaten up by it. It's red, but sort of under control, even without orabase. We have been advised by stoma nurse to clean her bottom with acqueous cream, which seems to be quite good. We have been using Cavilon cream and Metanium when we ran out, which both seems to be ok. We have also used the Spray a few times when we ran out of the Cavilon cream, but it does stick the bum together if you're not careful so not very useful.

Anyway, just hope she will be back to full strength soon, as she desperately needs to gain some weight.

Sammy, how is Lucas? These tummy bugs are such a nightmare, especially as the hospitals are full of them!

PLP nice to hear from you, it's been ages. Hope Cerys is well.

Sugarbea, also hi again and great that your Lo doesn't need any more ops. Hope they won't find anything wrong with her legs. What good news, that she knows when she is pooing, that certainly is a very good first step!

Rachel, sorry to hear your DS has chickenpox. We had the same scenario over xmas. DS had it and really worried DD would get it too, as she seems to have picked up every single bug this winter, but miraculously she didn't :) so fingers crossed you'll be lucky too.

Hairymelons, sorry to hear you're still having problems with the bag. We had same thing before xmas. Our dd had the 2 stomas as well, right next to eachother, so it looked live a figure of 8. We tried with and without orahesive powder, but I think when it was bad, we actually left it off for a while, as it doesn't actually necessarily help with the sticking. We would just put the eakin ring round the stoma as tightly as possible (we always pu ours on the radiator so it would be really nice and "hot" and sticky). then I would fill the gap where the "8" dips in at the side with the Pelican paste. The trick seems to be to put a tiny bit on, then put some water on your finger and smooth it down, so that the paste doesn;t stick to your finger. Then cut the bag as small as possible adn place it over the eaking ring. You just have to make sure you press it on very well, especially where the edge of the ring is, so that it all molds together and sticks. We had to change the bag every day, but at least we managed to heal the skin up and to prevent it from leaking at other times. Hope this works for you.

Got to go now, DS is getting impatient and DD probably needs another nappy change!

Speak to you all soon
Take care
Kxxx

hi all Krautmum good news home again the bugs really are the worst hopefully the poo will start to settle sounds like a nightmare. Great that bum not to bad hopefully that will continue
Sugarbea hope you not waiting too long for appointment the waiting is the worst
Lucas is doing really well considering i started back spoon feeding as i told them hell never eat if they keep stopping cause he getting too many bugs /infections. Hes starting to put on weight again but no sign of coming home Doc going to do more scans with dye on 8th march to see what blockages are like.
Hairymelon how you doing hope things have settled a little and bags start staying on bug hugs xxxx

Hi Sammy,

Great to hear that Lucas is putting on some weight and eating a bit again, but a nightmare that he still can't come home. That must be so difficult. Our lo was only in hospital for a week and that was quite enough for all of us. Our ds had to have dinner/spend days with 3 different lots of people as we don't have any family around and it's always so difficult just to organise all of that on top of having a sick little on in hospital. Luckily ds thought it was all really exciting and fun :) Really feel for you though with the trip to and from hospital all the time as well as the combination of stress and boredom when you're there. Let's there will be good news from the scan.

Our little one is still poorly. She was still throwing up a couple of times today, 5 days after it all started and diarrhoea still bad, although possibly a tiny bit better. The skin on her bottom is beginning to break down now it seems, so have started with some Orabase. I just hope it will be getting better soon as beginning to get worried about it...

All the best
Speak to you soon
xxx

thanks krautmum I have family near hospital so they help with visiting lucas But i rely totally on Brilliant Friends helping with boys. I have 3boys but 1 in secondary in school so dh able to get him after wrk.The other 2 my friends all share helping ide be lost without them but thank god like your ds they love it. It is really touch trying to stay positive when you feel like he's growing up before your eyes and your missing it. He is in hospital since 28th of November so hard to see light at the end of tunnel. Its crazy really i used to be sooooo stressed about stoma bag now i wouldnt care if he had it for a year just get him home. Thank god i seem to be doing well with bags and am changing them every 3 days and this is working as i catch it before leaks. I actually change bag while he sleeping so much better less stessfull.
Really hope your lil one gets over bug quickly and bum doesnt go too bad when will it end does it really. They could really do with a break xxxxxxxxxxxxxxxxx

Hi all,

Our lo's luck is still not improving. She finally stopped having diarrhoea on Friday and started eating again, only to go straight into constipation, more or less over night. She spent the whole weekend straining and in pain, only managing to get tiny amounts of poo out. Took her to A&E and luckily one of the surgical registrars was there who knows her. She was worried that her bottom was getting too small but said nothing needs to be done immediately, but we should come back on Monday. Went in yesterday and they put different sized Hegars up her bottom. Looks like the size is as before, but the registrar dilated slightly further. Rarely seen her cry like that and she strained madly when they put the Hegar in, trying to poo it out. Horrible. I don't know how some parents do this themselves, as it took 3 of us to do it. Poor thing was so traumatised. Started movicol on Saturday which has made her poo a bit softer, but today it's already getting thicker again and she still cries every time she is trying to do a poo. Can barely change her nappy as she is really sore as well.

I really hope it will all settle down very soon and it won't hurt her so much, so she doesn't get put off pooing completely.

Anyway, any of you who have already been through this, would like to hear if you had the same experience after reversal and how long it took to get better. Seeing her in all this pain is horrible.

Hope everyone else's little ones are making progress and hope to hear from you all soon

Krautmum xx

krautmum so sorry to hear things are not going your way poor lil one. Try babycentre.com there is a stoma page ill look and see too
big hugsxxx
Lucas got scan with dye up bum to see about blockages in colon so hopefully will get results later. Really fed up him in hospital 4mths now its so hard to stay positive.If its bad news they better sort out home TPN cause ive had enough.
hope all babies are well xxxx

sorry meant to ask you Hairymelon how you getting on with bags leaking really hope things have settled down know how distressing it is xxx

Hi Sammy,

You must be so fed up after so long in hospital. I really feel for you. I hope the results from his scan will be positive, you could do with some good news.

We should be grateful we're at home again at least, even if things aren't great.

Have they given you any sort of prognosis for Lucas at all And what about the test for NEC?

Let me know how you got on today and try to stay positive. It's got to get better at some point.

Krautmum
xxx

Krautmum so sorry to hear your LO has been having such a tough time with the pooing.

My DS is on movicol - have they suggested that you up the dose if necessary? It can take a little while to work but once it does it should make the poo more consistent in texture and hopefully mean she doesn't get so distressed. So sorry to hear she is sore also - has your Ilex paste come yet?

Sammy I really hope all is OK with the test results and you can leave hospital soon - you must be exhausted.

Rach x

Krautmum DD still suffers from constipation. After her op she took 2/3 sachets a day. We're now down to about 1 1/2 depending on what she's eaten. I remember after she was ill I stopped giving the movicol as the diarrhoea was immense. Yet the day it stopped she seemed blocked. In the first few months after surgery, once she had heeled we were prescribed microlax enemas (small micro enemas) that got rid of the blockage. The thing with movicol is it softens the stools of what you have eaten, not whats already in the stomach. It doesn't work straight away. Sometimes if she has not had enough movicol and then her dose is upped her poos are pencil thin. This is because the softened stool is coming out through the blockage.

Its kind of trial and error I think. Now my dd is 14mo we have a high fibre diet plan in order to phase out the need for medication all together. Our lives revolve around poo.! Hope her little bottom is healing ok x x

Sammy thinking about you and your LO. Really hope he gets to come home soon xx

"waves" to everyone else :)

Hi Krautmum. Our son (15 months) had his stoma reversal last Thursday and is still having a terrible time every time he does a poo. He is pooing about 20 times a day, his bottom is horribly sore (will be trying cleaning with olive oil from tomorrow) and he is very distressed every time he passes anything.

We told the nurses and his doctor at the hospital before we came home that this was happening but they said it was probably just his insides settling down after his op. Not sure how long we should leave this before we go back to them. Does anyone have any advice?

xx

hi all well we finally got a prognosis it is NEC he has a narrowing (structure) in the upper colon next to liver. They were having a meeting to see if they operate now or leave for a while. If they leave it for a few mths will be better for him as he is only just getting better. Looking to see if they will let him home on Home TPN was suposed to get answer today but they were in surgery all day so have to wait. But at least i know what im dealing with
Krautmum thanks but youve been through a lot with your lil one you are entitled to give out you think you are all finished once reversal. Poor lil mite hope ok and gets better soon xxx
MrsSimon here is def the place to get some help and support seems to be all trial and error hope it settles xxx
thanks all for your lovely support hope all babies and parents doing well xxxx

((hugs)) Sammy as you say at least you know what it is now and it sounds promising that they can operate on it. Hope for his sake they can leave it a while to give him a chance to spend some time at home with you all.

Hope you are OK - it's such an emotional roller coaster. A few months ago DH and I sat down and talked about everything that had happened with Ella from birth - and recalling it all was quite shocking, so I can only imagine how you must be feeling having had Lucas in hospital since he was born. If you ever need a shoulder please PM me

Rach xx

Sorry meant to also say hi sugarbea and welcome to MrsSimon - sorry to hear you LO has been suffering since the reversal. Could you maybe call his consultant or the ward for advice?

Hi all,

Sammy, sorry to hear about the NEC. Not exactly exactly what it entails (will look it up), but at least they know what they're dealing with and hope for you that they can do sth about it. I hope you'll be able to go home for a bit before they operate! Good luck.

Rachel/Sugarbea, thanks for the comments. Looks like we might have to up the movicol for a while, but as you say, it doesn't help with the stuff that's already in there. Lo still cries every 15mins or so, because she's either straining or otherwise in pain, but there's not that much poo coming out. She's been off her food until today, at least she started eating a bit so I can get some fibre into her and some calories, but not sure how that's going to affect her poo. She's only on 1/2 sachet of movicol for now.It's horrible to see them like that. She has changed from a very happy little girl to a very unhappy, distressed one, which is horrible to see. She screams pretty much every time I change her nappy, I can hardly wipe her and get all the creams back on. Her poor bottom is raw. Have received the Ilex now, but not sure we're using it correctly. I know you're supposed to just wipe the layer of poo and vaseline off, but somehow you always end up wiping some of the Ilex off as well it seems. It's really hard to tell, especially as they don't hold still. If anyone has experience with the Ilex, pls let me know. If we can get the soreness under control, it might be slightly less traumatic for her.

MrsSimon, hi :)
It sounds like your lo is having exactly the same problems as our daughter. They told me as well that it takes time for them to get used to the new feeling etc, but it does make you wonder whether it is all ok and going the way it should. Tonight, there seems to be some blood in the poo, which also worried me. Hope your little one will get better soon. By the way, we were advised to wipe her bottom with acqueous cream, which seems to work well. When she had diarrhoea 20-30times a day, we used that and Cavilon and managed to keep her bottom from breaking down. It's only since the constipation started that she was getting a very sore bottom.

Love to everyone and thanks for all your advice
xxx

hi all well surgeons have decided to operate in the next 3 wks have to wait till bug gone and then they have to make sure they have a bed in ICU as it is a big operation. Krautmum nec is basically a piece of bowel that is dead that has to be cut off and rejoined to the bowel. If they can they will do reversal at the same time if not they try fix ileostomy to make it not have as much output. Lucas is 13lb 14oz so they going to spend next few wks trying to fatten him up more.

Hi Sammy,

That's great news! Will this sort his bowel out completely or will he still need lots of the adhesions cut out? Would be great to get rid of the colostomy, even if this does bring other problems with it. I really hope it all goes well for you and you finally get to take him home after the surgery.

Sounds like he's doing really well weight-wise though! Our little one is only 15 1/2 pounds and she'll be one in a couple of weeks! Definitely won't hurt though to get as much onto him as you can!

All the best and spk to you soon
xxx