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 Tooting tans
Just to let you know you know, my son went to see the professor yesterday but alas he was delayed in Boston America, which is where he apparantly comes from.
my son saw his understudy who explained the new procedure, which is something to do with putting a tube into his belly button which leads directly into his bowel, obviously this involves surgery. They were going to book him in for a date there and then but my son wanted to see the proffesor himself first, before comitting himself to anything, so we are now awaiting a reschedule with him then we can talk more.
I hope your son is keeping well. By the way where abouts are you from, I know you mentioned a hospital in London, is that where you are located?

Hi tracie123
That's disappointing that the professor was not able to make it... I think your son is right to wait and see him. Our surgeon is away at the moment and it's impossible to get anything done! The procedure sounds interesting - what will the advantage be over what yoru son currently has?
My son is doing fine... wating for his surgeon to return next week an dhopefully get an update on when his stoma might be closed. While he is away the nurse will have to come round and do a dilation or two though...

Kathy - thanks for the info on colostomy organisations. I agree, colostomys get a bad press but it has worked great for my son! He is able to be a normal baby and has had no negative effects. But we also hope it will be closed in the next few months. I will look up the websites you recommend

Hi
It was abit disappointing, but he did get to know quite abit about the operation.
The surgery has not been used yet over here in the (UK) but has been tried in the States.
With what we can gather the only real advantage is that his button in his stomaach will be removed and a small hole inserted into his belly button, but he will still have to do regular washouts.
This will leave him with more scars then, but at the moment i am letting him think about the pros and cons himself and then when our next appointment arrives have a good talk with the surgeon himself.

I do sympathise with you about the dilations, that is the only real thing i found hard to cope with during my sons illness, no one knows what we have to go through ( and our children of course) during this procedure, but once the stoma has been reversed things can only go forward for you all, you are in my thoughts.
Love
Tracy
p.s tried to do some smileys e.t.c but cant the hang of it lol

Hi
It was abit disappointing, but he did get to know quite abit about the operation.
The surgery has not been used yet over here in the (UK) but has been tried in the States.
With what we can gather the only real advantage is that his button in his stomaach will be removed and a small hole inserted into his belly button, but he will still have to do regular washouts.
This will leave him with more scars then, but at the moment i am letting him think about the pros and cons himself and then when our next appointment arrives have a good talk with the surgeon himself.

I do sympathise with you about the dilations, that is the only real thing i found hard to cope with during my sons illness, no one knows what we have to go through ( and our children of course) during this procedure, but once the stoma has been reversed things can only go forward for you all, you are in my thoughts.
Love
Tracy
p.s tried to do some smileys e.t.c but cant the hang of it lol

Hi
It was abit disappointing, but he did get to know quite abit about the operation.
The surgery has not been used yet over here in the (UK) but has been tried in the States.
With what we can gather the only real advantage is that his button in his stomaach will be removed and a small hole inserted into his belly button, but he will still have to do regular washouts.
This will leave him with more scars then, but at the moment i am letting him think about the pros and cons himself and then when our next appointment arrives have a good talk with the surgeon himself.

I do sympathise with you about the dilations, that is the only real thing i found hard to cope with during my sons illness, no one knows what we have to go through ( and our children of course) during this procedure, but once the stoma has been reversed things can only go forward for you all, you are in my thoughts.
Love
Tracy
p.s tried to do some smileys e.t.c but cant the hang of it lol

Hi
It was abit disappointing, but he did get to know quite abit about the operation.
The surgery has not been used yet over here in the (UK) but has been tried in the States.
With what we can gather the only real advantage is that his button in his stomaach will be removed and a small hole inserted into his belly button, but he will still have to do regular washouts.
This will leave him with more scars then, but at the moment i am letting him think about the pros and cons himself and then when our next appointment arrives have a good talk with the surgeon himself.

I do sympathise with you about the dilations, that is the only real thing i found hard to cope with during my sons illness, no one knows what we have to go through ( and our children of course) during this procedure, but once the stoma has been reversed things can only go forward for you all, you are in my thoughts.
Love
Tracy
p.s tried to do some smileys e.t.c but cant the hang of it lol

Oops very sorry, dont know what happened there my thread has been posted alot.
sorry x

hi just wondered if you had managed to see the surgeon yet to find out more?
We are going in next week to see how things are, if it's looking good the surgeon might think about closing the stoma. I don't think he will be rushed though, but I guess that's good in the long run! It feels like a long haul and I know there's a lot more to do but my son is doing well so that's the main thing...

Hi Tooting Tans
Sorry i have not posted for a while my computer has been at the menders.
We saw the professor a week last Friday and we were very pleased with the outcome.
He wants to replace his ace button to a tiny hole through his belly button but we are awaiting various tests to see if everything is fine inside his bowels.
I do feel for you and also agree it is a very long haul but you have done really well so far just keep strong.
I have found another really great site which i feel would really benefit you its called extra special parents you have to fill out a registration and be excepted but its fantastic hope to see you there x

Greetings,

I am here a bit late in the discussion and am new to mumsnet. I have a 5 month old with a stoma and have been thru several surgeries. I am aiming to launch a website in the next couple of months for mums of babies with stomas, illiosomy's etc as I really struggled for the first couple months finding information and I feel that we mums could share our stories for new mums to help support emotionally as well as practically and for mums with more experience to share their tips and stories. As wonderful as the stoma nurses have been they do admit that we parents become the authorities on the subject. I would like to centralize all this information, from how to deal with the basics of putting on the bags, which bags work better, what to do when the stoma prolapses, and the emotional side of having a baby in and out of hospital. Although there are a few sites out there i would like to put it all in one place and create a starting point for mums. In order for the site to work, i will need stories and input. We go in for another round of surgery on tuesday so i will be away for a week or so, but will be gratefull if any of you mums will be willing to communicate your stories and tips and provide feedback for the types of things you would find helpful on the site/forum. I will let you know more details once i get things moving, in the meantime please let me know if there is any specific information you would like to be incorporated on the site.
Charlotte

Hi there
tracie123 - sorry haven't posted for ages! We have been in hospital as my son has had his stoma reversed! He is now pooing normally!
This is obviously great news but it is quite a tough time - as you probbably know they poo ALOT to start with, it is quite uncomfortable for him and he's getting a bit sore. I am looking forward to things settling down a bit. He is doing great though and has bounced back from the op.
How are things with your son?
CHarlottestomababy - i would be happy to contribute t your site, sounds a good idea... let me know when you are up and running!

Hi Tracie 123, thanks for being in touch! My son just had his reversal however we have no poo, so we are back in hospital quite alot to try to solve the problem. Great that you are willing to contribute. I was concerned as i don't want to reinvent the wheel on this one, but i think more support for mums of babies and the sharing of information is ideal. I finally meet with web designers this week. When you say he is uncomfortable, do you mean standard baby yeling or all out crying? just as when he does manage to go he could scream the house down for hours....Great news that your son is going though, i heard it slows down after about 12 weeks! xc

Hello ladies, sorry I didn't realise there had been any more posts. Great to see that there are more of us (in the right way of course).

Cerys has had constipation again and ended up tearing her bottom despite suppositories and lactulose. We had been doing really well giving her extra fruit etc to keep her going but she's been off her food (teething) and had got away with no medical support for a while. However, we're back to the old routine again for now. We had a bit of blood in her nappy last week and it freaked me out, brought back everything in my head. She's absolutely fine though, its amazing how they seem so robust isn't it!!!

Lovely to hear encouragement and get an idea of what the future might hold for our lo's. Tracie123, are you also on ESP? Charlottestomababy, I'd be happy to contribute, but are you also aware of Extra Special Parents? Definitely worth having a look, its been a God-send for me and many others xxxx

Hi guys, great to hear from you both! I hope your respective problems have sorted themselves out... one thing about this condition is that it seems to be a never ending run of different problems and issues... Ah well, my boy is doing fine, he is not really sore and not in discomfort any more. But he is going a lot less than he wa sand has had a touch of constipation. I'm not sure how much he 'should' be going really though. Funny how obsessed you can get with your baby's bowel movements!!
how are your little ones doing?

I totally agree - when people ask how she is doing, I politely say "well, we're rather obsessed with her poo in our house and I'm happy to share if you're prepared for it!". People are generally happy to hear it but I do worry that they think we're a bit loopy!

Have you tried prunes yet? I'm going to buy some tomorrow as everybody keeps telling me they're good for keeping them going - hope Cerys likes them lol!

btw, her consultant told me a few times that Cerys will need to go at least every 48 hours for the rest of her life. I panicked once when she went 24 hours without a poo but that was a one-off. I still obsess though...

Yes, I sometimes find myself launching into a lengthy description of his pooing habits then thinking 'they probably don't really want to hear this!'...
How old is your daughter and how long since her colostomy was closed? My son is 9 months and has been 1 month with a functioning bottom, so it's early days for us. His operation was apparently v tricky (very 'high' IA) so I don't know how things will work out for him later on, but so far he is v healthy which is the main thing...

Hiya!
Cerys is 13 and a bit months now, she had her reversal around the six months mark. In fact, I've just realised that she has finally been able to poo for more than half of her life

Yes, its the not knowing that is difficult - even though Cerys's was 'low' IA, we won't know what control she has until she potty trains. I had both my older kids dry by the age of 18mths/2yrs but have been told its more likely to happen later on with Cerys due to the problems she has had. I guess its not the end of the world if she's still in nappies at the age of 3?

Who is your consultant? We were in Southampton and have got Mr Griffiths, he really is brill! We saw his registrar yesterday and he said to continue with the lactulose/suppositories but use them more regularly as she tore her bottom a few weeks ago from such bad constipation!

Hope you manage to get settled soon, the time will fly by now you haven't got that bag hanging around! xx

Hello! Our daughter, Georgia Marie, is now 7 mos & has had her stoma since 5days old. We are coping much better now & got the hang of the bag changing...but she's so active now & on solids, so we have had some problems with bags & leaks...sometimes I change her 3times in a day! She has been great through it all & she has an operation scheduled for her cloaca & imperforate anus repair in May 09...in time for her first birthday...I really want to hear from other parents going through a similar situation..there is lots of local support with the nurses, but no other parents nearby for us to relate with & share emotions..we are living in the Far North of New Zealand. Anyone willing to talk would be very appreciated! Hope you all have a wonderful Christmas!

Sincerely,
Andrea Spake

have an urgent question. My 23 month old had surgery 3 months ago to create an anal and vaginal opening. She has an ostomy bag but her surgery to have that removed and do a connection to her bottom is in 2 weeks- but I have been terrified by someone saying the results immediately following the surgery are likened to 3rd degree burns all over her bottom area due to insane diarrhea. Has anyone had a baby that got their bag taken off and was "hooked" back up the "normal " way? Please give me any info you hVe

have an urgent question. My 23 month old had surgery 3 months ago to create an anal and vaginal opening. She has an ostomy bag but her surgery to have that removed and do a connection to her bottom is in 2 weeks- but I have been terrified by someone saying the results immediately following the surgery are likened to 3rd degree burns all over her bottom area due to insane diarrhea. Has anyone had a baby that got their bag taken off and was "hooked" back up the "normal " way? Please give me any info you hVe

Hi

Hope no one minds me posting in this thread

I have a 6 month old daughter who has cloaca and is due to have her next operation to create the anus and vaginal opening next month and I am terrified. Its reasurring but also sad to see there are other mums going through something similar.

Would love to chat to others in the same situation
xx

Hello ScottishSam, welcome and feel free to post. Yes, I've found it very reassuring to know that I wasn't alone too. I understand why you're terrified and while you've got that going on, you're still dealing with the day to day issues that are involved. There's a great site called Extra Special Parents that I'm sure you'll find very helpful, lots of other parents with similar problems etc and its a private site so you're not open to the 'public' viewing what you're saying. If you apply for membership, the lady who runs it is called Debbi and she'll just ask you a few simple questions in order for you to join. In fact, I think alot of the posters are scottish too lol! Hope that helps and big hugs to you xxxx

Hello PLP How's things?

ScottishSam - hope you can find some support it's hard when you feel alone.

Hi avagaga-

This is probably too late: we have a son with a ileostomy following Hirschsprungs disease (long story) - after his first operation prior to the ileostomy, he was going up to 20 times a day! The problem is that their skin is just not used to all that poo!!

We were given some great advice from the neonatal/stoma nurses, which we will follow again after his stoma reversal in 2 months time: For a few weeks prior to reversal, treat their bum with olive oil rubbed in with some cotton wool, once or twice a day. This will really moisturise the skin and create a good waterproof barrier.

Once the op is over, then when you are changing nappies, wash with olive oil dipped in cotton wool- not water and def not wipes. they also felt Metanium cream was the best at treating a sore bum. This kept our wee man out of trouble, thankfully. We were even brave enough to use real nappies, but if his bum started to look sore then we reverted back to the disposables and olive oil/ metanium routine.

I hope that helps someone- Good luck with it all