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!

Yay only 3 more bags :) bizarrely I think I may miss them once Ella has her reversal - they are such a part of her now!!

Ella was born with a VSD, ASD and pulmonary stenosis. However we were very fortunate that when she saw her consultant in August when she was 6 months they all appeared to have rectified themselves which was fab news as I was worried about surgery. They still err on the side of caution with regard to the bronchiolitis because of her history. Do they think your LO's VSD may still close of its own accord? Really hope so - I was so certain that Ella would need surgery that I couldn't quite believe it when her consultant said it was good news! He will see her again in the summer to just check that all is still OK and I think I will only really believe it is once we get past that appointment!

Not long now!!

Rach xx

hi all hope you all doing ok
rachel i would be doing same as you i wouldnt be rushing to get reversal if i didnt think he was well enough. Great news on Ella not needing more surgery
Hairymelon Nec is a piece of damaged bowel treatment stoma so good job he got it already it can sometimes heal itsself but more often need to remove.
Cant remember who asked about protective creams heres what we use using a two piece hollister bag eakin rings and Peri-Prep sensitive non sting protective film wipes are amazing instead of cavalon and still using orahesive and a belt stoma nurse made so we are getting 3days. I change it every 3days to prevent leakages his skin is perfect thank god.
Krautmum Thats brilliant news 3more bag changes WOW WOW WOW. Im a bit like you i dont get hopes up till i know things done. Saying loads prayers all will go smoothly.
Surgeons said going to do another loopagraph and check blockage/ narrowing upper bowel colon near liver again On the 8th of march my birthday and see if it is ok they might do reversal not dancing yet. Trouble is ill be so nervous with reversal in case they wrong and he gets more blockages. I know i sound mad but just wish they send him home as planned for few mths with bag If he could just obsorb enough to go home. He taking 70mils bottle 3hrs and a spoon feed of rice with 30mils and output about 550 so frustrating

Good luck for tomorrow Krautmum. Will be thinking of you and your family.

Sammy you don't sound mad, of course you want him home. I wish DS could keep the bag too sometimes, he's done really well on it and who knows how his gut will react once it's gone.

Can anyone recommend a barrier/ filler cream? We're using stomahesive which is very effective but hurts like hell when it's first applied. My brother has a bag and he said that it stings- DS goes spare when we put it on Better than sore skin but it's v distressing for everyone.

You are doing the right thing , rachel. She can't have the surgery if she's not well. Plus, the unknown is terrifying. You wonder whether it's worth putting them through it again when they are doing so well with the stoma. I just think that DS wouldn't thank me for not trying to get him as close to normal functio as poss when he's older, that get's me through the wobbles.

Hairymelons i use Eakin Rings and cut off pieces and use it to fill in i roll it or squeeze it to fit where there is a gap. I also use rings around stoma nicely fit under stoma to prevent leaks really works for me. I also use PERI-PREP wipes they are sticky and help seal bag and ring.i tried using stomahesive and found it sore for lucas too. I also use orahesive powder I hope this helps

Big hugs thinking of you tomorrow Krautmum hope all goes well for your lil one xxxxx Cant wait to hear good news news
hope all ok xxx

thanks sammy, that's brill :)

no prob let us know how you get on what method are you using at moment do you use rings already them wipes are brill they really protect the skin do you use one piece or 2 piece bag im using 2 piece find them much better.

We're using a one piece bag. I'll ask about the 2 piece bags then, which brand do you use?

Since we use the stomahesive he doesn't get sore but it stings so much. So, to get this right, you use peri-prep wipes, then an Eakin putty ring to fill gaps, then a 2 piece bag? Sorry, am soooo tired atm I can't seem to understand anything!

hi im not in hospital at moment but ill get you name of bags tomorrow but the nurse said its the seal thats important here is exactly how i do it
clean and dry stoma and area really well use peri-wipes around stoma and stomach then place Eakin rings in belly button and along scar from stoma. Lucas stoma is right beside scar -o-- so i fill in gaps basically by flattening rings and then place ring around stoma. I try as best as i can to get ring under stoma and if i need to fill in any more gaps basically use rings bits to fill in. Most of the time i get rings good fit and do not need to fill any more. Then i cut bag it doesnt matter if bag isnt perfect fit if rings are this really takes pressure out of cutting bag. Then i place bag i also use OrbaGel sacket into bag they thicken output and lessons leaks they are great. My nurse also made a bet to clip onto bags so takes weight off baby.
Can really feel your stress i was a wreck over xmas never thought ide get through it.Ill give you my email address if you want to contact me would be more than happy to help as i appreciated the help so so much.Where do you live im in Ireland

where do you live

I'm in Manchester. I'll PM you my e-mail address.

That's so helpful, thank you.

Hi All,

Just home for the day to look after DS1 and then back to hospital tonight.

Our little girl finally had her stoma reversal yesterday :):):):) The surgeon said her bottom is 8mm, the minimum size for him to do the closure, so we were lucky. She may need it dilated further in future, but at least she doesn't need the colostomy anymore. The op seems to have gone well and she was allowed tiny bits of water since last night and then some milk today, as there seems to have been a bit of wind etc, which meant they let her have a milk feed. Now we need to wait for that first poo before she can eat, but hopefully won't be too long. It's all happening a lot quicker than I thought, so she didn't have to starve for too long, poor thing. She was throwing up after the GA yesterday and has managed to pull her cannula out 4 times already, which is a bit of a nightmare, but they'll hopefully take her off the morphine and fluids soon. Hope it all goes well from hereon, will let you know once we're back home.

Hairymelons, we used Pelican Paste to fill gaps around stoma, it's alcohol free as far as I remember so doesn't sting. It never bothered our little one. We always used the Eakin cohesive slims around the stoma, making sure you get as tight a fit as possible and then filled the gaps with the Pelican paste. Her stoma was really sore and raw before xmas and by using this method and changing the bag everyday we managed to get it healed up again and healthy. We still tried to cut the bag as small as possible to give it that extra protection, but the eakin ring just means it doesn't seep under it quite so easily. Hope this helps.

Speak to you all soon
Krautmum xxx

no problem hun those bags are Holister 2 piece bags if i were you ide try get seal right first
chat soon
Krautmum Really wish you all the best today thinking of you xxxx cant wait to hear how you get on xxx

kRAUTMUM brilliant news so good NO MORE BAGS yipeeeeeeeee
hope all continues to go well [smile}

Wonderful news Krautmum - so pleased it went well and fingers crossed she can have some food very soon bless her.

Glad to hear you are able to split the hospital time and spend time with your DS too.

No more bags - yippee!!!!!

Rach xxxx

Fantastic news Krautmum! Hope DD poos v soon. It's exhausting being in hospital so hope you're all home v soon.

Right am going to ask for peri prep wipes, pelican paste, Eakin rings and 2 piece bags tmoro! Does anyone have codes handy? Can google if not.

Thanks so much everyone xx

sorry hun dont have codes as boxes are in hospital will get it for you 2mor. As for the eakin cohesive seals they sent me 2boxes of free samples and i got them pretty quickly just put help baby bag leaking and they send out samples 30 in each box www.eakin.co,uk

no don't worry sammy, I'll get em off google. Ta though!

Just wanted to say yay for Krautmum!!!! So so pleased for you!!! When Cerys had her reversal, I took pictures of her first poo - sounds disgusting but it was a momentus occasion and lots of my close friends said they wanted to see it - yuk!!! I look back now and can't believe we got through it, but we did!!

Hope all continues to go well... hello to everybody else too xx

purplelostprincess i was with a friend in the hospital a few wks ago child had reversal and we were like 2 mad people dancing around nappy with poo ha ha. You wouldnt get it unless youve been through it i know i will be the same
Krautmum hope things are continuing to go well xxx
Hairymelon hubby will get codes today for you

hairymelon here the codes for 2 piece bag stoma bag seal conform 2 code 34600 conform 2 drainable pouch code 24850 holister hope you get sorted

Hi everyone!

We've already been discharged this afternoon and are all home again :)

LO started pooing on Wednesday night, the day after surgery so was allowed food again yesterday, so she didn't have to starve for long at all and was already allowed water and milk on Wed. We were really surprised and happy it all happened so quickly! So far so good, she doesn't seem to mind the pooing, but her poor little bottom is already getting a bit sore :( At the moment we're just using Cavilon cream, hope it won't get too bad.

Oh, she's just done another one so better get that bottom cleaned quickly!

Will tell you more soon
Love to you all
Kxxx

Fantastic news! So pleased you're home, must be such a relief.

That's fantastic news Krautmum - wow home 3 days after surgery is great! Glad to hear it isn't distressing her too much and hope her bottom doesn't get too sore.

Did you get s picture of her first pooey nappy? I bet you were so thrilled to see it!

So nice that you can now enjoy and family weekend together :)

Rach xx

krautmum so delighted all is well thats such good news home so soon xxxxx

Hi all,

Lo in hospital again since yesterday. Started vomiting really badly middle of Friday night. By the time I got her to hospital she was throwing up bile, so surgeon on call arranged for an xray to rule out bowel obstruction and had tube put down (twice) to get bile out.

Luckily no bowel obstruction, so looks like she has picked up yet another tummy bug. Was very poorly all day yesterday with low oxygen sats, temperature and diarrhoea. Keeping fluids down now but still quite poorly so they're doing some blood tests as well and keeping her for another night.

Talk about being unlucky with the timing of that tummy bug, last thing she needs is diarrhoea after the stoma reversal, but let's hope we can keep that bottom from getting too sore.

Will let you know how we get on.
How is everyone else getting on? Sammy, how's Lucas doing? I hope he's making progress.

Speak to you all soon
Kx

Oh Krautmum, how awful for you!! It must feel like a big set back, it's such hard work all this going back and forth from hospital isn't it! It became my second home for far too long! It's a good job the staff are so kind and helpful and friendly!

Hope LO makes a speedy recovery xx