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!

Sugarbea that must have been terrifying for all of you. So glad to hear she is home and OK now.

Sammy so pleased to hear that Lucas is doing better now - I have everything crossed that he will be home with you very soon.

MrsSimon glad to hear things are improving and the orabase is working and Krautmum it sounds as if your LO is doing well - I hope you are both over the worst of it now and things settle down.

We are OK thanks - Ella and Seth better now.

Hope you all have a lovely weekend

R xx

Hi All,

Mrs Simon, so pleased to hear that Jack's bottom has healed up so quickly. Once his bottom is not sore anymore, he will hopefully stop anticipating the pain when he poos and it may make the pooing less stressful for him. I keep my fingers crossed that things will improve further very soon. Let me know how you get on.

Our daughter also seems to be up and down depending on the day. Yesterday and today she seemed to be pooing more again, but I hope it's only temporary. She's got a nasty chesty cough and cold and is more tired than usual, so that may affect things a bit as well. At least she sleeps very well in the night. We're off to spend 3 weeks with my parents soon, I cannot wait to get a little support for a while, just to take the pressure off for a bit and to try and re-charge my batteries.

Sammy, so great to hear that Lucas is doing so well and you can take him home very soon! You must be so excited. Really hope for you that nothing will get in the way now. What's broviac?? Hope he is up to full feeds very soon.

Rachel, thanks and good to hear your little ones are better again :)

Speak to you all soon
xx

krautmum a broviac is a central line into chest for long term use to feed him through this medicine and blood tests. its pretty cool as lucas veins got really bad it was horrible. It has to be fitted while he put asleep in thertre he is getting his removed tues yipeee last of TPN tomorrow.Its good that you ar getting a nights sleep at last hope the rest settles and your lil one gets over infection. Enjoy well earned break with parents xxxx
rachel nice to hear from you r u still on house arrest or are you allowed out lol Horrible when they are sick and you cant get out big hugs hun xxx
hope all parents and babies doing well xxx

Hi Krautmum

Can I just ask how your daughter is now when she is pooing? Is she quite happy and comfortable. Jack is pooing less often, bottom still good and nappy changes better but still when he poos he seems in pain - as much as he has done all along. Has this changed for your daughter? Also is she doing full proper poos in one go now - I know it's hard to know for sure but do you feel her poos are now bigger and a whole poo - if you see what I mean. Sorry to be wanting detail but we're definately not there yet and I wondered how it compared.

Sammy hope all goes well with removing Lucas's tubes this week and you get an indication of when you can bring him home.

Best wishes to all xx

Hi Mrs Simon,

Glad to hear that Jack's bottom is still under control and that he is pooing less often. We're still in a similar place, if not slighlty worse again. The long periods in between poos haven't happened for a while, apart from during the night and she seems to be in more discomfort again. She's had a bad cold for almost two weeks with a chesty cough and yesterday we found out she's got an ear infection. On antibiotics for that now. She's been pretty out of sorts since the beginning of the week and it's hard to know what exactly bothers her. Not sure if her being ill affects her bowels as well, so will have to see when she's better again. With regards to your questions, she is doing much larger poos now, which is reassuring, but she still doesn't seem to do a whole poo in one go. She seems to do them in 2 or 3 goes, I'd say, but it's so hard to tell. I will let you know how things go once she's over her cold and infection. Let me know how Jack is getting on. Hope things are steadily improving for you.

Love to all
xxx

hi all Lucas finally came home yesterday after five and a half months so delighted he doing well pooing and eating. Seems to hurt him pooing as he gets pretty upset before he goes bum not to bad at the moment but nurses said when he back eating full spoonfeeds he will poo a lot more. Using cavalon sticks once a day and metanium so we will see if it continues to work. Thanks to you all for your support through a really rough time and now for your posts to prepare me for what is ahead
rachel how you doing hun is your kids any better
krautmum and mrssimon sorry to hear your lil ones still having a rough time.really hope things improve soon xxx

Hi Sammy,

So pleased to hear that Lucas is finally home, it must be such a relief for you all. Does this mean they managed to get rid of all the adhesions and he should be "fine" from now on? The next few months will probably be hard because of the pooing, as we all know, but it's good to move on to the next stage and to feel that things are going in the right direction. Enjoy your time together as a family and I hope Lucas' bum problems won't get too bad and he doesn't suffer too much.

Spk to you soon
xx

krautmum thanks so so nice to have lucas home at last it makes you appreciate every little thing. On the adhesions he is at a very high risk of happening again will have to scan him in 6 wks. He gets so distressed before he poo's but once he goes he ok. He not great on feeds think its due to teething he wont take bottles at nite so i have to wake him in the mornings to get feed into him as i supposed to be getting 800mils or more each day im getting 650-700. which doesnt sound too bad but he has to be weighed every week and i have to ring dietician with weight and if he looses too much he back in.

Sammy I"m so thrilled you finally have Lucas home!!! Hope he continues improving with the pooing and weight gain.

Hope everyone is well and enjoying the lovely weather and time off

R x

Sammy how wonderful that Lucas is home. I really hope that he continues to progress well. You're doing really well to keep on top of his bottom.

Krautmum I am sorry to hear your daughter is under the weather. Sometimes it's impossible to work out where the discomfort is coming from. Jack is having good and bad days. Some days he doesn't stop trying to have a poo pretty much all day and others he'll go for a while; and his bottom is sore or a lot better depending on number of poos.

Jack is booked in for another dilation in a week. Has anyone else experienced this after a reversal? It came as a complete shock and we hadn't been told before his reversal that this would happen. It really doesn't help with Jack adjusting to his bottom as it is really sore afterwards but the consultant believes that the dilations will help him to poo more easily. Very disheartening and horrible for Jack to have more lined up.

Hoping everyone enjoys the long weekend. Lots of sunshine hopefully.

xx

Hi Mrs Simon,

Sorry to hear that Jack is still having such bad days alongside the better ones. It must be very disheartening.

Our daughter had a dilatation done just 2 weeks after the reversal as they worried her bottom might be closing up. When they checked it was as big as it should be, but they dilated slightly at the same time. As our daughter's anus is really small, only 9mm (at least it was then), I could well imagine she may need another dilatation at some stage but I really don't know. Our surgeon has a different approach in that he doesn't believe in dilating them to a certain large size before the reversal so not sure what his plan is long-term. Will have to ask next time we see him, but won't be for a couple of months now.

I hope it goes well for Jack and that it really does help him poo more easily. Is he still really distressed when he poos?

Our daughter is öuckily over her ear infection and is the happiest I have seen her in a very long time, long may it last. Her poos are still up and down as well but definitely getting better. The very best day she had so far was doing only 5 poos, but that only happened once! I would say she generally does about 7-9 a day now and some pretty big ones at times, so getting better.

Really hope things will look up for you soon
Let me know how you get on
xxx

Hi everyone, i was wondering if any of you have experience of a child with a caecostomy? This is looking like an increasingly likely possibility for my dd2 who is 7. There is a possibility of hirschprungs, but even if this isnt diagnosed then the stoma is still looking like the only option left. In many ways this would be a huge relief for us all and in many other ways i am very scared about what the future would hold for her. We are seeing the surgeon on monday to discuss where we go from here and my head is swirling! The reports i have read on this seem to be mainly about babies and i'm curious about older kids experiences of it. any info would really help us. cheers

hi i posted on your other thread but i have a nine year old with an ace stoma, message me if you want to chat
xx

Hi Everyone

Just spent an hour catching up. Sounds like everyone has been having a really rough time. You've all had me in floods. But Sammy, I am so thrilled to hear that your baby boy has finally come home. And Krautmum & MrsSimon, it sounds like your lo's are making progress, even if v slow and painful.

We went on holiday last week but it was a bit of a disaster, DS2 got a tummy bug & ended up in hospital on a drip because he got so dehydrated. Not much fun trying to communicate with doctors in Italian either, daft idea to take him abroad. Sugarbea, your experience sounds absolutely terrifying. It is incredible how quickly they bounce back although I bet you are still reeling.

Sorry I've not been in touch, I've been laying low of late, not been on MN for ages. Been back at work which is partly a godsend and partly a nightmare, It's our own business & we couldn't afford to pay someone else to work so I've had to go back. Thankfully, my lovely auntie is looking after the DSs at home so if there's a bag leak or DS2 needs a feed I can nip back. But it's hard to manage the kids, the house, the laundry (esp when he's leaky) etc.

We have an appointment with the surgeon tomorrow so will hopefully find out when DS2's reversal will happen. I don't really want it to happen but I know it's for the best so just want to get on with it now.

I don't know how you all cope, I know I really struggle to stay on top of everything.

Big hugs to you all

MrsS, are you at Central Manchester? Who's your surgeon?

xx

Hi Hairy

Nice to hear from you. Sorry to hear DS was ill on holiday - not daft to take him overseas - we took Ella to Sardinia last year just before her PSARP op for us all to have a break. We had been there the year before when I had a big bleed when I was around 5 weeks pregnant with her and the care I got was amazing so I felt confident that if anything happened whilst she was on holiday she would be well looked after. Other than the language barrier was the treatment OK?

Been having a few leaky days with Ella too - went out yesterday and just after we arrived at our destination discovered that she had had a big leak - full outfit change for her and I had to go and buy a new t-shirt for DH as he had picked her up before we realised - oops!! Then DS spilt water all down his top so he ended up wearing one of Ella's vests - I was the only one who didn't change outfit!!

You have a lot on your plate at the moment so don't feel down on yourself for finding it hard to keep on top of everything - I don't work and I find it hard enough!

Hope everyone else is doing OK and welcome again sunshineandshowers13 - glad you popped over!

R x

Hello all!

Just popped in quickly as we saw Cerys's consultant today, haven't seen him for about a year!

Cerys still isn't potty trained but I fully expected him to say we just needed to wait another year or so. Instead, after much discussion, it was decided to try a new treatment plan that may (or may not) help establish a pattern for Cerys.

Up to now we have managed with her having movicol every evening - we used to do it every other night but she was still constipated and often had tears etc. So she has been rather loose and I always carry extra clothes around as she often overflows! It had finally become rare for her to have the need for a suppository... Mr Griffiths suggested that we give her half a suppository every morning - this is partly because it makes her bowels contract so it may help her to recognise the sensation that she needs to poo. And partly also to clear her out so she is clean the rest of the time. It makes sense now but I never would have thought of it before! We have to do it every day for 2 weeks (I say WE but I will administer it), then we'll see about every other day or how she is after that. We will see Mr Griffiths again in 3 months time.

Before he went down this route, I asked him about the MACE button and the irrigation thing that I've read about as I spend hours trawling the internet looking for options for the future. IF Cerys turns out to be faecally incontinent, these are options he would consider, but not until she is 6 or 7.

So, all in all it's good to have a plan. However I did have a few tears after I got home as we've managed to get away with not having to administer treatment that is too intrusive recently. I had to do the dilations daily for the first year of her life and thought I'd got all that behind us, but hey ho, we do what we have to do!

I'm so glad Cerys won't go to school until she is 5 as it gives us a chance to find out what the future holds for her and if she will need any additional support....

Sorry to drop in and fly away quickly - I do read this thread regularly and think of you all often, promise! xx

The treatment was fine, the hospital was AWFUL. Plaster crumbling off the walls, no equipment, no resources at all it seemed. I was really shocked, thought with it being an EU country the hospitals would be a decent standard. The staff were lovely but it was very different to being in hospital at home. Obs consisted of me being handed a thermometer in the morning to do his temp!But they did what they needed to do obviously, and like I say they were really lovely & caring.

Purple, how old is Cerys now? And how long since she had her reversal? DS2 will be having his next month some time. I am dreading it.

Sammy, if you are around I'd love to know how you are getting on? Likewise everyone else. Hope things are starting to settle down now.

Hi PLP,

Lovely to hear from you after all this time! It helps hearing from someone who is so far ahead, as we are still in the first stages of it all and it's good to know what the future may or may not be like for our little ones. Does this mean that they think Cerys will not gain control over her bowels naturally? If so I'm sorry to hear that. It sounds as if it was sort of manageable with the Movicol but then as you say, you don't know until you speak to the experts again. As you say, it's good to have a plan and to know what you're doing in any case. I find it's most difficult when you're just meddling on your own without knowing if it's right or wrong and if you should contact the doctor or not. Let me know how it all goes, I wish you all the best. How is Cerys getting on otherwise? How are her feet? I hope it's all going well. Do stay in touch and let us know.

All the best
Krautmum xxx

Hello to all.
Hairy - we are at the Central Manchester childrens' hospital. Consultant is Mr Morabito? Are you there too?

We were in yesterday for Jack's 2nd post reversal dilation. 9 weeks since his reversal and he is not much improved really. His surgeon is now taking it a bit more seriously due to the amount of time passed and when he dilated Jack yesterday initially his bottom was only an 8 depsite being dilated to a 14 3.5 weeks ago. The surgeon thinks Jack's bottom is getting small again between dilations because he's pooing so frequently and such small amounts - the pooing just isn't stretching his bottom as it should and so it's getting small again instead of staying at the dilated size. Lactulose has been cancelled and we are seeing if Jack can have bigger poos without it whilst his bottom is big from the dilation.

This does all make sense but I am terrified he'll become constipated. Plus he is in real pain today from yesterday's dilation.

Hope all others improving

xx

Hi Mrs Simon,

Sounds like you're still having a hard time and it must be scary to find out that Jack's bottom is getting smaller. To what size did they dilate him yesterday? Our daughter's anus was only 8mm anyway and then after reversal dilated to 9, so very small in any case. She is managing to pass fairly large amounts of poo, although just in the last few days it has been getting less and she is doing quite a few small poos. I hope this is not a sign of things getting worse again, but we'll just have to wait and see.

I really hope they are right and Jack will be able to pass bigger amounts of poo without the lactulose, now that he's been dilated again. I can imagine you're scared but I suppose you have to trust the experts. I wish you all the best and let me know how things are going.

Krautmum
xx

Oh and hi hairy melons, sorry to hear you're little one was ill on holiday. We've had our fair share of tummy bugs so I know how horrible that is, especially being abroad and not in familiar surroundings. Glad ds2 is better again now. Let us know when the reversal is happening and all the best with keeping on top of everything. I had to leave work to look after lo for now and have quite enough on my hands, so you're doing a great job keeping it all together.

all the best
kx

hi all thanks for your lovely comments lucas is doing really well loving having him home still cant believe it. He has to get weighed every week and back in hospital for check ups every 2weeks to see dietician last time Gi doctor next week. He is very pukey and when he poo's its an explosion so how do we know when he has a bug. Is any of your lil ones lactose intollerent really struggling to find finger foods know fruit any ideas.
mrssimon really hope jack starts to do better really feel for you must be so frustrating its a scary time
hairymelon hi lovely to hear from you im going on holidays start june to france so really hope we dont end up in hospital with lucas. Dont feel bad you needed the holiday and it was well deserved by all i really need a holiday. Delighted he is on the mend xxx
plp so lovely to hear from you to its great the internet to research new things out really hope you get sorted you must feel better now you have a plan for Cery. Its a good idea to leave school til later really hope all goes well
hi Rachel how you doing hope the leaks settle xxx
sunshineandtheshowers hi hope you are ok i dont know what caecostomy is but my lil man had a stoma for over five mths and i learned some great ideas from mums in same situation and websites like this. Really hope all goes well for you and your lil one.
hope ive not forgotten anyone love to all xxx

PLP I know that feeling, not realising how sick they are. My DS4 wasn't gaining weight (4oz/100g in 6 weeks) His weight went down drastically before he was a week old (10% of birthweight) we thought because he had haematuria. He gained weight very slowly and stopped pooing. I did try and talk to the HV but she said that breast fed babies don't poo much when I tried to tell her he was not exclusively breast fed and that the very litlle bit he had pooed was green she told me that was normal so I believed he after 3 weeks. HV refused to weigh him more than once a month. A few days later he vomited bile and was rushed to hospital with severe dehydration and an obstructed bowel. He was minutes away from dying. Spent last 3 weeks thinking I should have tried harder to make them listen and why didn't I realise sooner he was that close to death.

Hi all,

Mrs Simon, I just wanted to see how Jack is doing after his dilatation. Are things any better? Is he still without any lactulose? I really hope things have improved for you.

our daughter's suddenly doing much smaller poos, only very few large ones compared to before so we're not sure if that's good or not. Stoma nurse recommended we increase the Movicol for a few days to see if that makes a difference. Just so hard to know if it's all as it should be, don't think they always know either...

Let me know how things are with you.

Sammy, hope Lucas is still doing well.

Hi to everyone else, hope all your little ones are well.

xx