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 to all

We don't want to speak too soon but think things are improving slowly as we come up to 2.5 weeks after Jack's reversal. He's had 3 nights now with no pooing until morning and today he really has been a lot more like himself. Less pooing means his bottom is looking a lot better.

Hairymelons, we used to leak all over the place with Jack. We put most of it down to his crawling around so much. I found the rings very tricky as Jack had 2 stomas together so the shape was hard to do well. In the end I used to split the ring and shape it round and then stick the ends over each other. It did seem to help.

Krautmum, we have stuck to the lactulose and have now halved it because we don't think Jack is constipated at the moment. He has lots of really soft poo and isn't straining at all. His problem has been the number of times he poos so we thought reducing the lactulose might reduce the number of times he has a poo. We've also battled on with the metanium as Jack's bottom hasn't been bleeding and this seems a lot better too. I really hope your daughter is improving. I know what you mean about them being like a different child. In the midst of them being so unhappy sometimes it's hard to remember that isn't how they are normally. Hopefully they will both be back to normal very soon.

Very best wishes to all xx

Thank you both.

We've had better luck with the Eakin rings (putting them on the radiator has made a big difference) so we got a full 24hrs out of his last bag. It looked like it was going to leak soon though.

Glad things seem to be settling down a little bit, MrsSimon. DS's op is due early may, he'll be 6 1/2 months old. And I'm terrified, I half wish they'd just leave the stoma as he's doing fine on it...but it's got to be done.

My skype doesn't work but I'll PM you my e-mail Sammy. Any news on the op?

All the best everyone xx

mrsimon and hairymelons glad things are working out better hope it continues xxx
lucas waiting 1 more test to see if bug gone 2 need 3 will let you know asap. Really hope it happens soon im exausted and want my baby home having a rough day today feeling very down. Hopefully tommorrow will be better xxxx

Hi Sammy,

Really hope bug will be gone and things will move on for you. Can understand you're getting down. Had many of these moments myself, but you just have to trust it will get better. Really hope you'll get a date soon for the op so you can work towards something. Hang on in there!

hairymelons, glad to hear you're getting the bag a bit more under control. We had to change the bag every day as well at the end, but at least it meant we didn't have poo everywhere and no more emergency changes. I found putting the eakin ring and the colostomy bag on the radiator has really helped, alternatively (as the weather gets warmer) using a hair dryer to heat them up also works well. We never "shaped" them beforehand, but just took the rings out of the packet when they were warm and the slid it over the stoma to get as tight a fit as possible. Hope the good luck continues.

Mrs Simon, it so good to hear that Jack is finally a bit better. Our lo seems a lot happier and not in as much pain pooing, but we have to change her nappy every night and just today again, she seems to be doing a little poo every 15 minutes or so. Not sure what's happening... We have our next clinic appt on Tuesday, which I'm really glad about, so I can hopefully find out if this is all as it should be. It's been almost 4 weeks since her reversal, but then she had the bad tummy bug in between, so might all take a bit longer to settle down. Very tired at the moment as we just don't get enough sleep, but hope it will improve like it did for you!

All the best to everyone

Speak to you all soon
Krautmum
xxx

Hi Krautmum

We're finding that Jack is now pooing less frequently but still not getting a whole poo out at once and so around mealtimes especially is still unhappy and uncomfortable but the periods inbetween are getting longer. He hasn't been up in the night for quite a few days now. We went in and changed him at 9.30 last night and then there was nothing until 6. It's definately not quite right still but we are wondering if it's a matter of time. It would be good to know what they tell you in clinic. We're back at the gp for a follow-up bottom skin appt tomorrow which is reassuring as it's a lot better but still very sore.

Best wishes to all xx
Sammy33 I hope so much that Lucas's test results were good. You have all my sympathy. I really hope you're feeling a lot better and send you a big hug.

Hairymelons Glad the bags are getting easier. I always felt that 24 hours was an ok amount of time for a bag. We used to change Jack (when he hadn't leaked) before his bath to give the skin a bit of bag free time and to get a good clean in the bath. Had some very pooey baths though!!!! Although come to think of it we still do although now it's from his bottom instead of his stoma!

hi all hope all a little better i finally got a date for reversal 7th of April ahhhhh really thought it would have been sooner. Asked the surgeon why not sooner but he cant as he has to have a whole day free for lucas as it is complicated. So all prayers please that he will be well for surgery and catches no more bugs ect. Thanks so much for all your support you all know how much i appreciate it xxx

Hairymelon glad you are having a bit of a better time lucas bag has been leaking again but i wasnt there to change and today figured out why it was leaking. They never put eakin rings along scar and in belly button as this has gaps and allows leaks to get through dont know if this is any good to you but worth a try. Did you get a belt for bags as i find this really helps as takes the weight off bag.

Krautmum i am reasured we will eventually get through this from reading about all the posts on this it is a lifesaver. Glad your lil one is doing much better good luck tuesday

Mrssimon good luck with appointment tommorow wonder are you and krautmum going to same hospital wouldnt that be amazing.
I mangaged to order ilex paste in my local chemist they order it in but i need perscription same for metanium they have it in a 10 days. My sil works in chemists and said she make me cream up they used to make it up mix of silcoks base (barrier cream) hydrocortiside (sorry spellings) steroid cream and Dactarym will get her to write instuctions and post tommorow. But supposed to be brilliant esp for bleeding skin bad skin. Mix it up lasts months.
chat soon xxx

Hi All,

Sammy that's great news about the date for the reversal. I know it seems a long way off, but as you say, hopefully Lucas won't catch anything in the meantime and be fit for the surgery! Really hope it all goes well from thereon, you deserve it. Also great that you can order the Ilex paste through the Pharmacy. We haven't used it when her bottom was a bit better, but have put some on last night to protect her red bottom over night and it seems to have done the job.

Mrs Simon, great to hear that Jack is getting on much better now and pooing less. It must be brilliant to get some sleep again! We find the same thing, that she cannot get a whole poo out and does it in lots of little poos. Hope this will get better as well.

Our lo is really up and down. Towards the end of last week we thought things were getting a tiny bit better and she was finally eating properly again, but then on Sunday she was pooing again every 10-15 minutes and in more pain again. Bottom getting sore again and one time when she strained it started bleeding again. Really not sure about it all. Just glad I can talk to surgeon today. Maybe we need to decrease the amount of Movicol she takes. Her poo is nowhere near runny or anything, but maybe it will help with the frequency if we take it down a notch. Will let you know what they say. At least she's much happier again today, after a bad spell yesterday afternoon.

Wishing you all a good day
Kxxx

Hi all

Sorry haven't been on for a while. Spent 4 weeks in quarantine with 2 x the pox so was going a bit stir crazy!! Finally all well and out and about this week which is great.

Sounds as if things are improving a bit with your LO's post reversal MrsSimon and Krautmum - hope it continues that way. Sammy glad to hear you have a date for the reversal - sorry it's not sooner and hope Lucas gets better and stays well.

I'm going to give it a couple of weeks and then chase up Ella's reversal - we should really have heard something by now but I haven't chased as she has been so poorly since November but can't keep putting it off. Hairymelons I know how you feel - I'm scared of losing the bag as despite a few prolapses early on Ella does really well with it!

Great to see you on here PLP - Cerys sounds as if she is doing really well.

Rach x

krautmum hope all went well with appointment
rachel nice to hear from you poor you 4wks quarantine im sure there's no keeping you in ha ha glad you finally getting out. It is great that we got date for surgery but he got last sample back today and bug still there ahhhhhhh. So really hoping and praying it be gone by the time he is getting operation. They dont know yet if he able to get reversal as they have to cut off dead bowel and re-attach bowel and then if there is no more blockage they can do reversal. But if they cant they will fix stoma to not have too much output. Think the bug is going though as his output gonr from over 700 to 300 yest and 400 today huge difference
I can really understand you not wanting to rush for reversal im half hoping bag so no more fears of blockage. I have started putting poo on lucas bum to get used to it so maybe not as sore as some poor babies.
mrssimon hope your appointment went well
all other mums and babies hope you all ok

Sammy33 so glad Lucas has his date and really hoping all bugs cleared up by then. Good you are doing the pooey bottom thing early - I wish we had and I hope that it helps massively post-reversal.

Krautmum reading your post I could be reading about Jack. We are back to pooing far more regularly, small poos, lots of unhappiness, sore bottom, up at 3am changing nappy. Like you we don't know if we need to change the amount of medication or just sit it out. Hope your appointment is of great use and you are very reassured and that your daughter is feeling happier.

RachelHRD glad you are able to get out and about. Chicken pox on top of everything else is too much.

Best wishes to all xx

Hi All,

Mrs Simon, saw the surgeon yesterday and he told me to reduce the amount of Movicol she takes, as pooing every 15 minutes is just not right. He reckons the tummy bug she had straight after the reversal has really thrown things out, so might all take a bit longer. I was told to give her a whole sachet of Movicol but just every other day, as this seems to suit children with ARMs quite well. Let's see if that works. Haven't given her any this morning, so fingers crossed x. Funny enough, last night she slept through from 8.30 till 7am and didn't even smell of poo when she woke up! First time that has happened and no doubt won't happen again! She much chirpier today, it is her first birthday as well :), and pooing a lot less, so really hope things will improve. However, as it's been so up and down, I fully expect it to go backwards and forwards for quite a while until we have found the right balance of Movicol and diet etc.

Really hope Jack will improve again soon, it's even more disheartening, when they have improved and then get worse again! All the best and let me know how you get on.

Sammy, really hope that bug will finally go and Lucas gets well for the surgery. Either way he needs to be fit for that, even if they don't do the reversal.

Hi Rachel, poor you, 2 lots of chicken pox, can't be fun. I can sympathise with you with regards to being indoors. I don't get out much at the moment with the constant poos. Make the most of your new-found freedom, the weather has been lovely the last couple of days, which cheers me up a bit :)

speak to you all soon
Kxxx

Krautmum, happy birthday for yesterday for your daughter. I hope you managed to have a great day with her. So pleased that she sounds happier. Very good that the surgeon has agreed the constant pooing is not what should be happening and giving advice on the movical.

Jack is having a bad couple of days. We suspect tummy bug - rubbish appetite and today slept for 4 hours after lunch (he's 18 months so this is completely out-of-the-ordinary bonkers sleeping). He did do a huge poo after several attempts before he went to sleep so we are hoping for a quiet night and some respite for his bottom. Hoping for a better day tomorrow.

xx

Hi Mrs Simon,

Sorry to hear that Jack is worse again. Is he still pooing very frequently? And is his bottom still very sore? We've not had the best couple of days either. After a great day on Wednesday, she has been pooing/straining a lot more again and after 2 nights of sleeping through (yeah!) she was waking up quite a bit last night. Her bottom is horrendously sore again, all weepy and a nightmare to change her. It was completely clear on Wednesday, so can't believe it's gone so bad again after such a short time. Will make sure next time it clears up I just keep using the Orabase in the same way to make sure it doesn't happen again. Her appetite is still not very good, which is always an extra stress :( sounds like you're having the same problem. In the evenings it feels like we're having a race against time to change her and then get her to bed as quickly as possible, so she doesn't poo again before she falls asleep. Seems the only way to keep her bottom clean for a while.

I just can't see at the moment how she will ever manage to do a big poo in one go and then go for a couple of hours without anything, while being awake...

Hope you had a better night and things are improving again. Will let you know how we get on with the new Movicol regime in any case.

We're having a couple of kids round for a little birthday party tomorrow, so really hope she'll be in good spirits and able to join in a bit!

Speak to you soon
Krautmum x

Hi Krautmum

Really sorry to hear your daughter is still struggling. We are exactly the same - completely despairing of what to do. We seem to be in a pattern at the moment. Ok mornings, eats good breakfast and then eats very little for the rest of the day. Around lunchtime lots of discomfort and often small poos. Very, very tired. After his sleep not too bad but coming up to teatime lots of distress, loads of small poos, bath - often more pooing and then one great big poo after which all quiet and a pretty decent night's sleep.

We don't know where we are with the lactulose. There is some straining and tonight Jack had a very, very red face during one bout of pooing but his poo is really, really soft and lots of it (despite not eating well at all - where does it come from?) His last poo tonight was so loose that tomorrow we are going to give the lactulose a miss and just see what happens.

Tonight we probably had 8 poos between 5 and 7.30. Bottom very, very sore. Changing him is often a nightmare.

We really don't know what to do. Waiting for appointment with consultant - hopefully next week. Poor Jack - he is very unhappy.

xx

omg you are having such a horrible time Krautmum and MrsSimon with your lil ones poor babies. What creams are you both using now is any of them any good. Do you not have a nurse to ring about movical seems a long time to wait til next week. Surely they should have some system where you can call hospital and get nurse to ask doc to advice you lil ones and you have been through enough. Really hope things improve quickly.
the things im dreading is the soreness and loss of appetite lucas LOVES his food and the poor man only allowed 100mils every 4hrs he finishes it in seconds. He also has 2 spoonfeeds dinner and fruit and baby rice both gone in 10mins. Dreading if he goes off food only thing going well at moment.
His test came back still has bug sent off another sample so about a week before we get that back if it doesnt go dont think theyll operate on 7th april ahhhhhhhh. Been putting poo on bum 1 a day for 10 mins gonna put it on for 20 tommorrow bum ok for now really hope this works. Did any of your babies poo while had ileostomy baby on ward has stoma 9mths and is pooing 4mths so when she has reversal she be ok.Krautmum belated Happy Birthday for your lil one xxxx
thanks for your lovely support xxx

rachel sorry forgot to ask how you doing did you get a date for ella reversal totally get why you be in no hurry to ask Did you try putting poo on bum to get it used to it Hope your ok xxx

Sammy33 so sorry to hear lucas still has bug. Hopefully next sample will come back clear so that you can keep your operation date. We are still using some timodine cream for thrush and metanium. Bottom not too bad today because until this evening Jack didn't poo so it gave it a bit of a rest.

Don't worry too much about the not eating - Jack doesn't have much of an appetite at the best of times and in no way could be described as loving his food. The slightest thing can put him off. It might not affect Lucas in the same way.

This evening we have had sickness and runny poo. Have halved the lactulose and am going back to gp tomorrow.

Can't believe the weekend is over. Better week next week I hope for all.

xx

Hi All,

Sammy, you must be getting so fed up with that bug. I cannot believe it is lingering for soo long. I really hope it will be gone before the 7th. I know what it's like when you've got your heart set on a date for surgery and then it doesn't happen. I do hope Lucas won't go off his food after reversal, that's still sth we struggle with :( Thanks for the birthday wishes, we had a lovely afternoon and dd was happy amongst all the children, despite it being quite noisy and hectic. She's definitely a lot better with kids than with adults at the moment!

Mrs Simon,

Really sorry to hear Jack is still struggling so much. Our lo also has a really sore bottom again with these red, weeping, dimply patches. It looks like agony and as you say, at times complete nightmare to change her nappy. Has his bottom cleared up at all at some point? We are using the Ilex over night now and the Orabase in the day and at least the sore patches are getting smaller again. Also using Orabase powder on the weeping bits to dry them out. the good thing is that our lo is a lot happier now in general, and sleeps through most nights again (what a relief), although just had to change her last night at half 4. She doesn't poo every 15 minutes anymore, but probably easily still every half hour, unless we're out. Also still strains frequently during meals, which puts her off, just like Jack. I can't say I can detect much of a pattern, but then I sometimes find it hard to keep track with 2.5 year old around. In any case, the reduced amount of Movicol has not made her poo any harder, which is great, the less she needs the better. I suppose we just have to wait and see if frequency of pooing gets any better and otherwise reduce the Movicol further? Will speak to BM nurse this week and see what she advises. At least I feel like I can cope with things a lot better again, as we are getting more sleep and our daughter is a lot happier. I was really struggling for a while there and so stressed out, which doesn't help anyone. Really hope you get to a stage where Jack is a lot less distressed even if the constant pooing will carry on for a while.

All the best!
xxx

hi all i ordered metanium paste off my chemist and had to get a perscription for it i paid 16euro and today went up north shopping and they had it in sainsburys for 146pound reduced from 276 some difference. Just thought ide let you all know in case some of you having trouble getting it or like me paid well over the odds for it. Had a lovely day shopping with dh mum went up to lucas and gave us a day off and it was so nice just me and dh. We havent really seen much of each other with going to hospital. Lucas is doing well so nervous he will get sick before surgery and so excited to. Guess its in gods hands and we can only pray all goes well
Mrssimon and krautmum hope your lil ones are doing better xxx

Hi Krautmum

Really glad your daughter is much happier more ofter. We have had a bleak week but this afternoon things were brighter. I have tried to call the bm manager but unavailable which was quite frustrating. We just don't know whether to reduce the lactulose again or just drop it altogether (Jack doesn't have much) just to see if he poos less frequently.
How funny that your daughter doesn't poo whilst out because Jack is exactly the same - completely happiest in his pram.

Sammy33 really, really glad Lucas is doing well and good for you to have some time out - you really deserve it.

Best wishes
to all
xx

Hi Mrs Simon

Sorry to hear that you had a bad week. I know how hard it is and how it does seem never-ending. How often does Jack poo now? Is it still constant or does he have any periods in between without pooing? Is his bottom still really sore? I hope you can speak to the BM person soon and get some advice.

I spoke to mine yesterday and she just said our lo needs a bit more time, but it will get better eventually...

We are continuing with our sachet of Movicol every other day and it keeps her poo soft enough. Having struggled with her eating for over 4 weeks, she seems to have finally got her appetite back today. She had 3 good meals with very little formula in between, which made me so happy :) I realised how much stress her not eating has caused me, so that was a weight off my shoulders today. I really hope she keeps going. I must say, today I can say for the first time since last Wed, that she has had some noticeably longer periods in between poos, at least a couple of times during the day, so I hope this continues. Unfortunately I cannot get these 2 patches on her bottom to stop bleeding, which is still a problem, but I hope they will heal up eventually.

I really hope things will improve for you soon, as you need some rest and something positive to focus on. Let me know how you get on with the BM person.

Sammy, great to hear that you had a day out with dh, that's so important. Sadly we don't ever get to do that due to a lack of grandparents in the country, but you have to make the most of it whenever the opportunity is there. It gives you some energy back to cope with things, so glad you had a lovely day. Great to hear that Lucas is doing well and really hope he stays fit for his op on the 7th. Keep us posted. By the way, we can just buy the Metanium in Tesco's as well, so didn't realise that you can't get in everywhere. Well at least you found a cheap source now :)

Speak to you all soon
Kxxx

Hi all

Sammy sorry to hear that Lucas still has the bug - really hope he gets over it soon. Glad to hear you got some well deserved time with your DH - you totally deserve it with all the stress you are under.

MrsSimon sorry to hear you have been having a tough week. It might be worth seeing if you could change LO from lactulose to movicol if possible. My DS has bowel issues and has recently changed over and the difference is really noticeable - the movicol manages his bowels much better.

Krautmum glad to hear LO seems to be eating more and pooing less - hope her bottom calms down soon.

We are OK thanks Sammy - I'm not chasing Ella's op at the moment as we are in the middle of a nightmare of house selling, buying off plan and living in rented and it's really stressful so I will chase it once we are moved which should be in June. She is doing well post chickenpox and I also just want her to have some well time without medical intervention for a while.

Hope you are all OK

Rach xx

Hi Rachel,

Sounds like you've got your hands full with buying/selling/moving. That's always really stressful in itself without all the rest of it. Hope it all goes smoothly and you can settle into your new home quite soon. Great to hear that Ella's doing well and understand that you want to enjoy some time without hospital stays etc.

Re: Movicol, I think you're right, a different medication may well help. Mrs Simon, speak to your doctor and see if a change is a possibility. Our lo's surgeon told us that Movicol is by far the most effective for babies with ARM's. I know everyone has a different opinion on these matters but it may be worth a try.

Hope everyone is having a good weekend and speak to you all soon
Krautmum xxx

hi all nice to hear your doing well rachel move ect so stressfull i would be the same reversal can wait.
Got test results back thats 2 clear 1 positive and now 1clear yeahhhhh they said we could take him out of hospital for few hrs i went into panic mode. So afraid that he will catch something before thurs No way he can stay in a few more days we have waited this long. Im sure youll think im off my head but im absolutly terified.
Mrs simon hope you get in touch with someone to ask if you can change medication really hope things get better soon it must be great having Krautmum in same boat. Getting advice and feeling not so alone
Krautmum we can only get the creams by perscription
hope your lil ones improve quickly hugs xxxxxxxxxxxxxxxxx

Hi all and happy Mothers' day for yesterday. I hope everyone got the cup of tea in bed that they very much deserve!

Jack has now had no lactulose or anything since Friday following advice from the BM woman who said he was pooing too frequently. He was on quite a small dose and had been discharged originally without any. TBH not that much has changed - he's still pooing far too often and his poo is still really soft. Very sore bottom still but a smaller area is very sore. In between pooing today he has been delightful which gives me great hope.

On a less positive note we appear to have dropped off the radar at the hospital! Rang the secretary today to chase up Jack's appt and he hasn't got one. The secretary was going to speak to his surgeon. I know they're busy but aaaarghhh!

Sammy so glad Lucas is bug free. I really have my fingers crossed for you for the next few days.

Krautmum I hope your LO is doing ok. We have this wierd thing whereby Jack can be half an hour in his pram - absolutely happy and as soon as he gets out and stands up he starts straining. Almost as if just being upright makes him want to poo.

Best wishes to all. Hope all your LOs are sleeping well.

xx