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,
I've just joined as my son who is now 5 weeks old and has an ileostomy and i too am having similar issues with changing his bag, cutting his stoma, springing leaks etc.

It is amazing how many other people are going through similar things when before i'd never realised how many problems babies could have - how ignorant!!!

I hope you are feeling more reassured, i certainly appreciate the tips i've read (PLP). I am now awaiting an appointment with the surgeon to tell us what the next step is and whether the little fella has hirshsprungs disease.

Stay calm, i'm sure you're doing a great job!!!

Hi newmom08, glad that our experiences have helped in some way Sounds like you're doing a great job too! Any news on an appointment yet?

Well, Cerys had her reversal done and she is doing really well. It's still a novelty to have her do 'normal' poos in her nappy! Her bottom seems to be holding up well so far - we're using metanium. I'm just waiting for DH to change her nappy and I'll be happy lol!

I took a picture of the first dirty nappy and will always remember her first fart . I didn't realise that she would be starved for 48 hours afterwards too but she amazed the doctors and was keeping down water within 24 hours and so was allowed some milk soon after that. Its funny, she seems so much happier since the operation, its almost like she knows that she is fixed now. The only little annoying thing is that the general anaesthetic made her all chesty but that seems to be easing off now.

Thank you for all the support and kind words through all of this. It feels like we have finally come to the end of a long road!

PLP xxx

Wow that's great PLP, i'm sure i'll be as ecstatic hearing his first trump instead of his bag squeaking!!!

I'm glad the reversal went well, we'll find out when Lukes will be at appointment on 10th March. How old is Cerys?

Hiya! She's six months old now and boy has it flown! She had her colostomy done at three days old, heart surgery at 9 weeks old, reconstruction at 14 weeks and then the reversal last week. From what I can gather we've done quite well as many others seem to be having theirs done much later than Cerys.

If you don't mind me asking, how does an ileostomy work? Is it the same as a colostomy but attached to the urethra instead of the bowel? Sorry if I'm being nosey but I've heart lots about them but don't know much... Are you dealing with poo or wee?

Not long till 10th March, at least you have a date to work towards for now. I found that our lives worked around all the appointments etc and each one was a milestone that got us closer to the next one...

Hi,
I know what you mean about appointments, we have a stoma nurse coming round weekly to give him a washout. An Ileostomy is attached to the small bowel so runny yellow poo basically.

As Luke is only 7 weeks old i was kinda hoping his reversal op will be sooner than 6 months as i'll have to think about going back to work and don't feel like i can leave him with anyone to cope with the responsibilities of his bag leaking (which is does quite often).
Roll on the 10th March!!!

I'm glad Cerys is doing well and all the ops have gone smoothly, is that it now or is she having to have more things done?

Hello everyone and hello Newmom08 and Darlop,

It's been ages since i've checked this thread. I thought it would have ended, but I'm so glad it's brought more of us mums together.

Just emailed you PurpleLostPrincess and I am so, so happy and relieved to read that the reversal went well and you finally got to take a picture of that 1st pooey nappy!

We've been having bag problems too, not with leaking but with rubbing, sore skin, blistered colostomy = lots of bag changes. All resolved by a simple change of product. We stopped using the Pelican ones with the bear fabric on and started using the Pouchkins ones. They are FAB. Easier to empty, really soft, move with DD's skin. No more ridges and creases. They dissolve instead of raise as they wear away and you can put them on very snuggly without running the risk of her colostomy getting irritated. The closer fit means less skin soreness. I wouldn't have believed that possible a few weeks ago, we were so down about it.

We have suddenly been given an earlier op date and now have just two weeks to wait rather than two months as we though.
Really happy and relieved that things are moving quicker, but rather scared. The whole 'not thinking about it' philosphy is quite hard to maintain and I feel rather daunted by it as the day gets closer, but I want to get through it and I am much better at 'not thinking about it' than I used to be!

Newmom08 and Darlop - has anyone suggested using these extra layers of skin barrier squares that you put on first, cut a whole in and then put the bag over the top. They are meant to make the bags last longer. Also, heating the bags on your body before sticking them on can help. We always try to do DD's bag while she is asleep. We sneak her out of bed and if she stirs, I comfort her back to sleep. That helps us get a good fit and give her skin a good clean as well as taking the stress out of the situation. We call this the 'colostomy fairy' approach and it works well for us.

I really hope things have resolved a bit since you posted. You are not alone, although it's hard not to feel like that. I hope you find comfort and support on thisd thread and on the other websites. It is great to know that there is somewhere you can go when you need to talk about these things.

x x x

Hi mrshippy,

Thanks for the advice, we are using the pelican bags and having more leaks now so i will definately look at the other options. We have been warming the bags under our arms which has helped alot and Lukes' stoma has prolapsed slightly so we're now using bigger templates which seems to have resolved the sore skin situation (fingers crossed).

I hope the operation goes well for your wee one, thanks for all the tips!!!

Oooh sorry i meant to ask, which supplier do you use for your pouches? We use Fittleworths but i couldn't see those pouchkins on the list.

Many thanks, newmom08

Hi Newmom98

All I can say is that the Pouchkins ones are FANTASTC and better than the Pelican ones in every way - from our experience at least. The skin barrier is really thin and flexible, it moves with the skin so much better. The most significant thing for us has been that instead of lifting off the skin, like the Pelican ones, it dissolves into a soft mush and then down to the thinest bit of clingfilm type plastic. DD had her colostomy op on January 14th and although we soon got used to changing her bag, we have faught a constant battle with these bags raising up as the wear away and rubbing against her colostomy as she curled around or kicked her legs. Every night we would have to look at her colostomy and either sacrifice her skin by cutting the bags bigger to allow the colostomy to heal and the next night we would then have to put it on snuggly to allow her skin to heal, knowing there was a good chance it would raise up and rub her colostomy. Every time I changed her I would cringe watching the way those bags folded up and 'crunched' into her colostomy. I would see little bleeds caused by that and feel that I had to change it again. That has all finished with these bags. They are superb. For the first time since the op, we are able to give her a snug fit knoeing that colostomy wont be irritaed, even if she spend all day kicking her legs up and curling around. I find them easier to empty too. We have only had one leak, and that was when it had been on for about 24 hours and water got it in during her bath because I didn't do it up properly.

We were also given these things called colostoplasts - Pelican supply those too. They are an extra layer of skin protextor. You put those on first with a hole and then put the bags ontop. That was something else we were given as an option to try but didn't need to. The Puchkins are made by Holister.

Have you been in touch with your colostomy nurse? She should have samples of lots of different products for you to try. Pelican supplies all our stuff and they have had to order them in especially. Our nurse had to authorise that though. There are allot of products on the market. Why not ask your colostomy nurse to get some samples for you to try. I will happily post you some of the colostoplasts and a pouchkins to try. If they work for you, she should be able to order them in for you via your supplier. Just insist upon it. I personally would never want to use the Pelican ones again after using pouchkins!

Good luck and let me know if you want me to send you some. I have the CAT facility and will email you.

Hope this helps x x x

Just wanted to add that the ouchkins don't have air valves, so all the wind stays in the bag, but we haven't found that a problem as the valves on the the Pelican ones didn't really seem to do much. Also, they don't have fabric covers. It is just 'frosted' clear plastic. That doesn't bother us though, but you do need good light to put them on. DD has an outpatients appointment tomorrow and I will get to see our Colostomy nurse. She has been really great and is very experienced. I will ask her what she would suggest to someone who is having problems with leaking bags. My guess would be that she would suggest the colostoplasts, because there is an extra layer then that waste would have to get through before a leak could happen. I will ask her anyway and post back on here tomorrow.

Sorry for my waffly, long posts. My brain is even less efficient than normal by this time of the day!

Pouchkins - not Ouchkins - that wouldn't sell well would it!

Great thanks for the info, i'm seeing the Stoma nurse on Friday so i'll check with her about the pouchkins. It's really kind of you to offer to supply a bag, i will let you know if no joy on Friday.

Many thanks again, it's a huge relief to know that we're not alone in this plight!!!!

Hi NewMom08

Hopefully your Stoma nurse will give you some more products/techniques to try. We struggled with different problems and simply having a better product really turned things around. Three weeks ago to the day I was sitting there in tears after yet another bag change, knowing full-well that no matter how well I put the blasted thing on, it would start crunching into DD's colostomy and I would have to do it again. Even if we made it through the day with the one bag it would be raw skin or blisters all over her colostomy. I think most mums of babies with Stoma's have had days were they have done bag change after bag change and felt so desperate and alone. Hopefully you'll find a better product/techniques and things will get better. You are absolutely not alone.

Here is some more accurate info and links on the bags we have had such great success with. You or your nurse can order free samples off this page. If you want some quicker, I have a spare pack and I will happily post them to you...

Hollister 3796 38mm ctf drainable bags. Pouchkins.

[[http://www.hollister.com/uk/products/product_series.asp?id=1&family=63&series=324}}

Not much blub on this page, but on a US reseller site it says...
"Hollister uses the finest materials available for its Pouchkins? line.
Hollister uses all the newest technology for Pouchkins ostomy products. Superior skin care for child's sensitive skin; SoftFlex skin barrier is flexible and gentle; sized for a child. ComfortWear panels provide a soft, cloth-like covering between the pouch and the skin. Comfort is achieved by its flexibility. It molds to the body's contours; the user has greater freedom of movement. "

DD's bag is very low on her left and that area of skin moves everytime she kicks her legs or curls her body. These bags totally stand up to that without creasing. So I agree 100% with that description.

As for the pad things. Can't find them on the Coloplast website, but have fond something similar on the Pelican website. It says about them preventing leaks which sounds hopefull.

www.pelicanhealthcare.co.uk/ostomy/skin_protect.htm#top

Good luck and keep smiling x x x

Also, our nurse said they are very new on the Market. Only avaiable since December. So that might be why suppliers have to order them in especially.

Great thanks alot for the info. I really appreciate your help!

Hi Mrshippy,

Just wanted to know how your little one got on, has she had the reversal yet?

We have sampled the pouchkins and they definately are kinder to the skin - so thanks for the advice.

We've just got Lukes' reversal date through so only have one month to wait, which i have to say is sooner than we'd imagined but gotta be a good thing.

Anyhows good luck with your little princess!!!

Just wanted to say hello as I am so happy to find some other mums in same position as me!!
DS 6 mo had colostomy at 1 day old following diagnosis at birth of imperforate anus. He underwent reconstructive surgery in March, we are now waiting to get the stoma closed, hopefully sometime over the summer.
Like you guys we struggled at first with the colostomy and leaking bags... but over time we have found a bag that works for us (Nova Dansac if you're interested!) plus we have done it so much we can now virtually change bags in our sleep! I actually feel quite positive about the stoma now as it has enabled DS to grow and develop normally into big healthy boy, and doesn't seem to bother him in the slightest.

Is quite tough at the moment though - having got through his op it now feels like there is still such a long way to go with more surgery, dilattion, then nappy rash, laxatives, potty training... Would love to hear how things are going for those who are post colostomy closure!! Or at any stage with similar conditions really.

Hi All
I came across this site by accident, just thought i would post a little message of encouragment to you all.
My son was born on new years eve 1987 with a high imperforate anus which now makes him 21 this year.
We have gone through alot of the things you are now experiencing and its so hard and seems never ending but there is light at the end of the tunnel, my son works full time and leads a normal healthy life although he still has bowel problems but this does not interfere with his life.I could go on for hours really talking about this condition so if anyone needs some support or any questions about the future please email me i would be glad to help

Hi tracie great to hear from someone with long experience of this condition!! It would be great to hear more about how your son has got on - did it take a long time to get to the point of being able to manage the condition? What were the biggest difficulties? (if you don't mind answering these questions!!) My son is only 6 mo (also high imperforate anus) and we are told that he should end up with function sufficient that he can lead a normal life... but it seems a long way off just now!

Hi
My son now has a great life, he had a pull through operation when he was about 9 or 10 which is an operation that leads a tube directly into his bowel so that he can do what is called a washout, which means this empties his entire bowel so that he can be safe to go anywhere or stay overnight knowing that he will have no accidents and also hold down a full time job.
The road along the way was so hard i will not lie you feel so helpless that your child has to go through this and at times i felt that i could not cope watching my child operation after operation. One of the hardest things i found was the stretching of the anus with what is called hagars or dilators im not sure if you are at that stage yet? but it does get easier, you fear what the future holds for your child re school, friends and relationships, even though your child is only a baby im sure you have already thought about that i know i did but i need not have worried my son has turned into a fine young man and no one knows that he has a slight problem.
We were told a few years ago that there was nothing more that could be done and he would always have to have washouts, but then unxpectedly out of the blue we got a call from a professer from a hospital and he specialises in the imperforate anus condition he had gone through medical records and found my son and called and asked if he would like to meet him as he has found a new procedure that would get rid of the open hole in his stomach and lead even more of a normal life we were all shell shocked really and so excited, he has his appointment next Tuesday so i will keep you informed, see i told you i could talk for hours about this lol, im sure i have missed plenty off but please feel free to ask me any questions or apprehnsions that you have and please stay strong there is definately a glorious light at the end of the tunnel. kind regards
Tracy

Hi, thanks so much for your message, I'm so glad your son is doing well. it's great to hear! when our son was born we were told it's ok, he will have an op and though not a complete cure he will be fine. Now it is dawning on me that it is not that simple! My son has had the reconstruction surgery, we started doing dilations and I agree it was awful, one of the worst things i've ever had to do. It got to the point where my son fought so hard (thankfully he is a strong boy!) we couldn't get it in and even the nurse had problems. So now our surgeon is doing it under anaesthetic once every week or two. That's easier emotionally but I'm worried the results won't be so good... Which hospital are you going to for your a ppointment? We are at St George's in London, meant to be good but who can tell...
Anyway I will try not to go on and on, very good luck with your appointment, I hope there is some good news for you.

Hi
We live in Barnsley south Yorkshire, my son from birth was under the sheffield childrens hospital which is really a very good teaching hospital, once he got to 18 he had to switch to the northern general which is also in Sheffield, that is where he will see the proffesor, i too was told at the very beginning that things wouldnt be too difficult for him and gradually he would be fine, although it did take quite a few years for us to seem to get to a level that we could all cope with, although i imagine now hopefully with the amount of children being born with this condition that the medical side has come on alot in 21 years.
You will have alot of great things happening when your son has his reversal, i.e first poo nappy its brilliant i was on the phone calling all my family and friends.
But also you then have the coming months to see how and if the bowel is working properly, but we can talk again about that when the time is nearer and find out how your son progresses. You and your son and family are now in my thoughts and i am here to try and help answer any questions or problems you may have on your journey.
Kind regards
Tracy

Thanks so much for telling me about your experience, and I hope the professor has some good news for you - let me know how you get on! I'm told that the operation my son had was only invented about 20 yrs ago so dont know if it is exactly the same as your son - as you say hopefully things are improving all the time, and maybe there are new things they can do for him now.
We have been told that our son should be managing his condition ok by the time he goes to school. How did your son find school? And how does he feel about his condition now, is he ok with it?
Hope you don't mind these questions! Is so interesting to talk to someone who has been through it all!

Hi
i will definately let you know how we get on on tuesday, it was abit hard actually at first when he started main stream school as he still did not have feeling in his back passage so therefore didnt know when he was having a poo, we had to try different types of pads that he could wear to try to combat this problem he did have a helper though at school who was a real angel and helped him with his toilet needs.
He did go through a stage though when he was between ages of 6 - 12 yrs that he did get upset about his problem and say why me why cant i be normal like other kids, this was really hard but i just kept saying your problems could be alot worse than they are. The worst things he found hard really were staying over at friends etc it was hard for him to do this.
He gradually accepted his condition when he was about 14 but saying that it was only on odd occasions that it really affected him. He now just gets on with things and realises now that there are are many more worse conditions that other kids have to go through and had accepted that this was how things were going to be for the rest of his life and just got on with it, same as i said before though things may be different for your son, but i suppose knowing what things could be like, may help you cope a bit more. Please feel free to ask any thing else you may have concerns about im nearly an expert lol.

Hi - I found this site via google and wanted to post a message of support.

My husband had an emergency ileostomy 23 years ago, following a sudden and short illness. As he was so ill I was very involved in caring for him.

The ileostomy hasn't stopped him in any way. He returned to his full time job and we later had two sons who are now 19 and 21.
He has had other health issues - not related to the ileo - which have slowed him down.

Around 8 years ago I joined an internet support group for ostomates, and now help run this. The group contains relatives as well as ostomates and includes:

parents of children with an ostomy
teenage ostomates
adults who had their ostomy surgery as a child

Recently two members started a group for parents and children in the UK. They have arranged two meet ups, and the third is being held in 2009. The purpose is to put families in touch with each other and reduce the isolation so often felt. The meet ups are held in youth hostels and activities take place over the 3 days.

Here are some details:

Ostomyland
ostomyland.com/mainsite/

BreakAway
breakaway-visit.co.uk/

Ostomy Support for Parents and Children

• a list of sites, worldwide:

www.ostomylinks.co.uk/young.html

I am also happy to be contacted.

I hope this helps,
Kathy