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!

And to everyone else,

Wishing you a very happy and hopefully healthy New Year. I hope things will get better and easier for all of you and your little ones.

I look forward to hearing how everyone is getting on in the new year.

Lots of love
Kraumum
xxx

Hi

Anna - congratulations on the arrival of your twins, but sorry to hear of Chloe's IA. It is such a difficult time at the beginning but does get easier! Does Chloe use stoma bags? I used to put tights over the bags, just remember to keep checking them so that they don't get too full of wind as this can lead to them bursting - we had a few problems with that!

I hope everyone else has had a good Christmas and wishing everyone a happy new year!!

Hi everyone!!

I was searching online for 'Colostomy Reversal in Infants' and came across this thread!
How is everyone and their little ones?
Emily was diagnosed with an imperforate anus 'anorectal malformation with rectovestibular fistula' when she was 2 days old (she was born 04/02/11), she was taken into theatre within 2 hours of being diagnosed and had a Loop Sygmoid Colostomy put in place.
Needless to say it was very daunting and I can empathise with other Mums who have said it is a scary experience.
However, I do have to say that all the doctors involved in Emilys care were outstanding! As were the nurses!

She has had her colostomy bag for 11 months now and we haven't had a huge amount of problems with it. It went through a phase of leaking every 10-12 hours but after meeting with her Stoma nurse we agreed it was time she moved up to the 'adumt mini' baseplates and bags and (touch wood) since then the problems have been minimal.

Can I ask if anyone was given the 'Apeel' spray as soon as their child had the colostomy done? We weren't, we were just given the wipes and it wasn't until a few weeks later when we went in for a check up that I saw the nurse using it. I asked for some for us to use but she said they didn't give them to babies?! I rang Emilys stoma nurse there and then to demand some (using the wipes was leaving her skin red and sore). WHAT A DIFFERENCE TO THE WIPES! WOW!!!

Emily had her anoplasty op in June but we've just discovered she'll probably need to have it re-done! She healed so fast that the scar tissue seems to have moved it slightly forward.
Anyway, we won't know whether they'll do the anoplasty again or just reverse the stoma until she comes out of theatre (her op is booked in for the end of this month)
So at the moment I'm learning all I can about the colostomy reversal and its risks.
(I know i'm babbling... lol!)

I know I'm new here but I would also like to offer my services in terms of advice etc. I made it my mission to learn just about everything there is to know about Stomas, bag changes etc. My stoma nurse was pretty much my best friend while Emily was in hospital.
She has even used me a couple of times to sit with Mums and help them realise it really is something that can be dealt with without too much upset if you take your time to learn what you can.

Anyway, my email address is [email protected] if anyone would like to email me to chat, it would be lovely to talk to other mums in a similar position to me.

Laura
xx

Welcome Laura and hi everyone, hope you all had a good new year. We have just got home following our LO's PSARP surgery. Happy to be home and glad it's over as I found it really traumatic. The procedure took 5 hours in total, 45 minutes of which was spent trying to get a cannula in. They ended up putting one in his groin. The malformation was higher than thought so we they are going for a mix of surgical and home dilations. We have to go back for day surgery in a couple of weeks. We also have another suprapubic catheter as bladder and kidneys playing up. How is everyone getting on?

Hi everyone,

It's been quiet on here for a while. I hope everyone is ok.

Welcome laura,

I'm sorry to hear your little one has to have her op re-done, that must be a nightmare, but you seem to be coping with the stoma side very well, which is great. I hope the op goes well.

Cosmic donut,

I'm pleased to hear the PSARP is done and has gone ok. I can sympathise with the cannula scenario. I seem to remember our lo had 6 cannulas put in during her stay for the reversal as she just kept pulling them out.

I'm sorry to hear you're going to have to do home dilatations. I hope it won't be too traumatic for any of you. Also, sorry to hear about his kidneys and bladder. What do they say is wrong with them for him to need a catheter again?

We've just had another scan for our daughter's multicystic kidney. Unfortunately it hasn't shrunk so far, which means they may well have to take it out when she's about 4 or so. On the positive note she the working kidney doesn't seem to have any problems so far, fingers crossed it will stay that way. Let us know how you're getting on.

Love to everyone
Krautmum xx

Hi everyone,

I am new here. I've to be honest I've been visiting this site for a while and needed some time to read and let it out. I've been crying a lot anytime started reading any of your comments.

My son was born in October with IA and had op next day. We are just facing the next op in February which I can not wait, but so scared as well. My son BB is a very happy baby and I am afraid he will take so badly after the op when we need to do the dilating.

My partner is great with BB and would change the bag in no seconds. We have been struggling with leaking bags, changing them sometimes 3 times a day. In these days we tried one bag which looks like stays better than the others we used before. This one is from Pelican.

You all look so strong here and thanks for sharing all your experiences.

Szilke

Hi Szilke, welcome. I'm so sorry you are having to go through all this. My heart honestly breaks everytime I see a new mum to the board as I understand the heartache you are going through. The only thing I can say is you will find the strength to cope with all this from somewhere and it does get a little easier to cope as you go on. I remember going into a panic everytime I had to change a Stoma bag and now I have the confidence to do them with no trouble. I'm not saying it's a walk in the park now and I still have very teary days but they are getting fewer. We use pelican bags too and have just gone up from the neonatal size to the paediatric size and they seem to
work better, especially over night. Drop me a message if you want to
ask anything.

Krautmum - we had to have another suprapubic as he is retaining urine. Although he wees normally, there is still some left in his bladder and we think that is what is causing the urine infections.

DS just had his first dilation under GA and we were allowed home after 2 hours. Got another one in a couple of weeks then I think we will move to home ones. He is such a trouper, takes it all in his stride and always has a smile for the nurses! Been told he might have bladder spasms though, anyone have any experience of these? Seems to be causing discomfort when urinating.

Thank you for your support Cosmicdonut. How are you? Are you doing any dilation at home? Hope your DS is doing well!
I've had many teary days in these days. I can't free my mind as we are going for the next op on Sunday.

Hi Szilke,

Welcome. I'm sorry to hear your little boy was born with IA. I can sympathise with you, the first 18 months after our lo was born were probably the worst of my life, but things do get better and you learn to cope with things better after a while. The important thing is to talk to people and this site is a good place to start :)

I hope everything goes well with the op tomorrow. Let us know how you get on.

Hope everyone else is well.

Love
Krautmum

Hi my little girl is much older she is 9 and has a colostomy, i was wondering if any of you have experience of NG feeding at home as we are in the process of a setting this up and its all a bit daunting, i thought i would ask on here as i have lurked for ages and thought you guys would understand the emotions involved !!

My cousin had a colostomy when she was 2; this was 35 years ago, when things were rather different. Her parents no doubt went through all the hell on earth scenarios that you are all going through.

She is now a happily married woman with two gorgeous children. She's the light at the end of your tunnel

Hello all, sorry for not posting for so long! I have just discovered the mobile app so thought I would pop in with an update on Cerys. She starts school in September and so far is showing no signs of being able to control her bowels so may need to be statemented. She is doing well with wees on the toilet with the help of a star chart but so far doesn't seem confident enough to try just knickers. We were struggling to find pull ups since she had a growth spurt but were so relieved to find ones in all the supermarket to fit up to the age of 13 or so for boys and girls.
As far as her feet go, she still struggles but she gets by. Her buggy is way too small so we're looking for something bigger.
Her eyesight has improved with the help of patches so much so that we're picking up new glasses tomorrow with a much weaker prescription, yay
So things have been as normal as they can be around here (whatever that is!?).
Welcome to all new posters and hope the regulars are doing well.
I'll be back soon to let you know how school goes. Take care all, PLP

Hello everyone and hello to the new mums on here...

It brings back so many memories when I read your posts. Hope things are going OK and it's getting easier now for you all.

Just knowing you aren't alone with this helps.

DD update: She is still soiling, but has started doing a few full days a week at nursery to get her used to school. She's managing to get through the day with minimal to no soiling now yet at home we are doing three or more clean ups a day. She actually seems to soil allot more at home. Not sure how she will be when she's there everyday. I have insisted that she has a health plan and am waiting to discuss what class she'll be in.

We now face a big dilemma. If it wasn't for the continence issues, DD would be one of 10 children (including her two best friends) who would automatically be put in with 20 'year 1' children. Her school has split year groups. The school is open plan, but their is a reception building which I apart from the rest of the school. It is gorgeous and much more like a nursery. The TA in their is a friend of mine and I trust her implicitally. The staffing ratio is higher (so she'll be better supported), the toilets are more private, the children will be younger and therefore less likely to notice (and tease DD) DD's soiling. But if she goes in there it will come at a price...her being seperated from her two best friends and end up being the oldest by 4 months at least. To my horror , the school seems to be having problems managing bullying behaviour. My DS (7) has had some issues this year and a number of parents have moved/are moving their DC. Shuddering at the thought. Not least because having seen DD suffer so much I tend to fly into a 'mother lion' rage at the mere thought of her suffering any further pain or indignity due to this totally random affliction.

We are due to discuss it with the head at some point soon and I honestly don't know where she would have the best start.

We're also still very dependent on the Movicol...which troubles me the longer she's on it (nearly 3 years now). It has been a 'miracle drug' for her, but has not been around long enough to have any studies into long term use. I think I'm going to have another push diet wise to at least try and reduce it down by half a sachet per day.

hi there im new ere i had a prem baby girl born at 26weeks weighin 2pound she got nec twice and has been left with a stoma prob for life i find it a constant worry its always leakin as shes on the move as she is now 14months old but the size of a 6month old ive been dealin with her stoma for over a year now if i can help u in anyway i will

hi there im new ere i had a prem baby girl born at 26weeks weighin 2pound she got nec twice and has been left with a stoma prob for life i find it a constant worry its always leakin as shes on the move as she is now 14months old but the size of a 6month old ive been dealin with her stoma for over a year now if i can help u in anyway i will

Hi again PLP and Ilovehugs and welcome faithsmummy!

It's been a while since I checked this thread, but it's great to hear from you again.

PLP, it looks like you still have a lot of problems to deal with, it can't be easy, especially with school just round the corner. What does your local school offer you in terms of staff assistance and facilities to deal with Cerys' problems? It would be interesting to know.

My little girl is 2 1/4 now, so quite a way off school, but my son is going next year, and as I want them at the same school, I'll have to look into things this autumn.

After another bad winter in terms of chest infections/tummy bugs etc, she has finally had a good 2-3 months of being very well, with very few coughs and colds, which has been such a relief. Best she's been since she was born. Hope it continues.

Her VSD looks ever so slightly better and we really hope it will close over time. We found she still has reflux, despite being over 2, and will need to stay on medication for the time being, which is a shame, but at least it seems to keep her oesophagus healthy and the whole thing doesn't seem to bother her.

From a poo point of view, she still does about 7 poos a day on average, which is only a small improvement compared to a year ago. She's also still on Movicol, but at least only on 1 sachet every other day. she has shown some interest in the potty and has even managed to do a few poos and wees on it, which at this stage is quite encouraging. She seems to be very keen on wearing her brothers pants (over her nappy) whenever she gets hold of a pair, which is quite sweet. Maybe we'll give her a go with some knickers and see what happens...

Other than that, she's been having slightly low oxygen sats over the last 6-9 months, which has lead to a host of new tests, for which we should get the results by the end of the month. She also has this shadow on her lung, which they are trying to get rid of with 6 weeks of antibiotics. Let's hope it works.

Apart from all of that, she actually seems very well and I feel grateful that apart from all the nappy changing, she's leading a fairly normal life and can enjoy most things other kids can enjoy.

Let me know how you all get on and hope to hear from you soon
Krautmum xxx

Sorry to resurrect a zombie thread but I'm in need of some advice!

My 12 month old has had a stoma put in place a week ago.
He was diagnosed at 4 months with imperforate anus...and due to several admin cock-ups and months of me emailing the surgeon and chasing the hospital, he FINALLY went for surgery last Wednesday. The operation was to create the stoma and then reposition the anus, however when they got in there they found his rectum was serious impacted (I've been saying this all along but they wouldn't listen...I feel he should have been offered frequent washouts while awaiting surgery but wasn't taken seriously) His rectum blockage was 8cm wide and had distended the entire rectum meaning that they couldn't safely do the second part of the surgery.
They are hoping it will retract to normal size within 6-8 wks so they can complete the procedure.

We got home from hospital on Monday and have been getting to grips with ostomy life. The bag is fine, we are managing well so far however we are having issues at night with leaky nappies. We have tried normal pampers and pull up pants but in order for the nappy not to rub on the stoma site, the nappy is sitting too low down in front and leaking.

I had thought that perhaps tucking the bottom for the bag into the nappy would be the right thing to try. Can anyone offer any advice on best practise with nappies and stoma bags?
Thanks in advance.