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!

Hello and thanks for all welcomes.

Krautmum, it does sound as if our children are experiencing the same reaction. We too are wondering if something has gone a bit wrong as he is in such discomfort. Despite having an operation to join his bottom to his muscle properly, it doesn't seem to have made any difference at all and he is just as uncomfortable as before his op and his stoma.

I am hoping that I am being impatient and overly pessimistic. I rang the ward today and spoke to the bowel management person who assured me that everything sounded normal; well she hasn't seen him trying to have a poo - so red he looks as if his head will pop off with the straining. She advised me to give him some lactulose (we weren't sent home with any) and see if things improve. Bottom wise she said we should use a shringe to squirt water to clean it, blot dry with kitchen roll and then use metanium. Unfortunately this is happening so often that he has spent the whole day crying and his bottom hasn't improved at all as well as waking up throughout the night having done tiny poos. Poor angel, it is horrible for him.

Please let me know how you get on over the next few days.

xx

Hi Mrs Simon,

Sorry to hear your lo is still suffering. I can really empathise with you We're not having any more luck ourselves. Our dd is still in a lot of pain. There's a bit of blood coming out with every poo. Because she's in oain, she will only ever poo a tiny bit and then stop again. She keeps doing that every 10/15 mins. She's in agony every time I clean her bottom and will barely let me wipe her. Her bottom is so sore now it's bleeding as well. Went back to the hospital again today as I didn't know what to do with her. The surgical reg said this was normal and to be expected, as she is sore inside and out adn just not used to the feeling in her rectum. I have found it really hard today after only a week of this and dread thinking how long this will go on for. The poor thing must be exhausted from the constant effort and pain.

I hope you will see some improvement soon. I think you will need sth slightly more "hard core" than Metanium to get that sore bum under control. We have been given Orabase by the hospital, which you mix with Vaseline and put a really think coating on. This has helped us through the tummy bug diarrhoea. Ask your hospital or GP, they should be able to prescribe it.

What did your boy need the stoma for?

I really hope he gets better soon.
Let me know how you get on
Kxxx

Hi Krautmum

Am really sorry to hear your daughter is still suffering and that you didn't get any further help from the hospital.

Our ds had his stoma because he was born with an anorectal malformation which meant his bottom was in the wrong place, was too small and because of being in the wrong place his bottom wasn't connected properly to the muscle that pushes out the poo. He needed the stoma whilst his bottom healed from the operation to move it. The surgeon said the operation was a success (they used the electrode thing to check) but to be honest things are not much different to how he was before the op.

We have spent all day not knowing what to do and had decided to go back to A&E in the morning if there was no improvement. However having read your post we just don't know if there's any point.

Is your daughter still straining to poo or is the movicol helping? We have upped the lactulose. I did ask the hospital for movicol but the bowel management woman said it was too soon for ds to use it (he has only ever had lactulose). Today ds has strained and cried all day, one small poo after the other. We don't even know if he is constipated as all his poo is soft. No improvement with pooing or with bottom soreness - we will try to get orabase tomorrow.

BTW our ds is also small - he's only 8kg at 17 months.

Please keep posting. If we have any breakthrough we will let you know.

xx

Hi again,

Our daughter was also born with anorectal malformation but with vestibular fistula, no bottom at all.

It's hard to know what to do. I just felt so helpless today that I phoned BM-Nurse up twice to see if it was all normal and if they had any further advice. Because I got all upset on the phone they asked me to come in. The surgical reg was really nice and said it was all normal, but I suppose it doesn't help you much with the day to day problems you're facing. The BM-Nurse also gave me some more tips; they all sound great in theory but in reality if you're baby is madly clenching their buttocks and screaming, you have a hard time doing anything...

Yes do try the Orabase, they said at our hospital they had good results with it. Just have to mix it with Vaseline so it doesn't stick and apparently use loads of it. The movicol doesn't seem to have worked yet, have upped the dose yesterday. However, I think her poo is about the right consistency, the pain seems to be connected to the sore bottom (inside and out) and being new to it all, so we probably don't need to get her poo much softer. So hard to tell though... She seems to be doing less of the straining now, but squeals every time she pushes out a poo, that's why I'm thinking the consistency must be ok, but it just really hurts! they suggested giving her some Paracetamol for the time being, which I have been doing. Anything that might help ease the pain.

I have also heard of people using the stomahesive powder any sore bits on their bottom. Have put some on her for the first time today as I think it might then help with the cream going on afterwards, but have to see if it helps. Worth a try and it seemed to help with the sore bits around the stoma.

If I have any breakthroughs I shall let you know.

Off to bed now, had a terrible night last night with lo waking up constantly and pooing, hope tonight will be better.
Hope you all have a good night
xxx

Hi everyone

Krautmum and mrs simon after both my dd pull thrus I must have gone back into a&e at least 3 times with the soreness in her bum. The second time she was a lot older and wouldn't sit on her bum at all. But it did heal. Its a horrible time for everyone esp the LO's. But I think they're little bottoms just have to get used to the process. The main thing they stressed to me was giving the bottom air. DD spent most of the few weeks after her op with no nappy on and me catching the poo.
Hope they both feel better soon but my DD did get over it she's been pooing through the new hole for 7 months now and after the first 2 1/2 months things seemed to settle down... There is hope :)

Hi Sugarbea,

Thanks for your message. It's great to hear that things will get better and I'm glad to hear we're not the only ones in an out of hospital. You keep thinking, the doctor's think you're a hypochondriac by proxy, but you just don't know what's right and wrong and you don't want to make things worse for your lo by not dealing with them early enough.

Did your dd also do the constant straining and push out tiny poos constantly? What was it like after the first couple of months, how often did she poo then? Apart from the air, what did you find worked best for her sore bottom?

Well I'm glad that your lo is doing well now, that must be a relief! I hope our ones will get there very soon too.

xxx

Krautmum and MrsSimon I'm so sorry to hear both your LO's are struggling post reversal - it's the bit that scares me the most but I know we have to go through it to give them the best chance of normality with their bowels for the future. I can totally understand you taking them back in with any concerns - I would be doing the same. We have actually moved closer to Ella's hospital to make it easier in the future.

Sugarbea it's reassuring to hear it does get better and I'm so glad to hear your LO is doing well after all the traumas of her operations.

Ella is currently covered in chickenpox as expected and is suffering poor mite but still trying to be cheerful. So cabin fever continues in this house!!

Hope things improve soon for you both

Rach x

hi all seems like we all having a rough time its so nice we all here for each other. Whats pull through operation sugarbea why
lucas operation they will cut blockages that they can get at. wont know till they go in if they can do reversal but as long as the stoma works i dont mind. The poor lil ones have beeen through so much and reversals seem to be a hole new set problems dreading it. I am going to start stocking up on creams anyone ordered ilex if so how much do you order.
Rachel cabin fever really must be bad you stuck in a good while now hope ELLA ok. My mum used to make a paste with breadsoda for itch and put it in bath its a old tradition but it really worlks
Krautmum an d mrssimon hope it all settles soon xxxx

Krautmum my local A&E know me on a first name basis. As mums we know how a cut or a burn or a graze should heal but i've got no clue what a new bottom should look like . And in fact neither do most of the doctors that aren't specialist surgeons (which always made me feel a lot better and sometimes a b it more clever :o )
I was always so supprised to hear the sugical team say that she looks fine because it looked horrible to me. Im sitting crossed legged now thinking about it.
I used orabase on her after surgery and I also used to change her in the bath. It was a lot of hard work and a lot of water for every nappy change but was where she felt most comfortable. I didn't use wipes either I used cotton wool pads (not the balls, the make up pads as they don't leave bits behind). I just let her stand up and wiped her standing. I'm afraid we still have straining issues even now her bum isn't sore. Sometimes they can poo through a blockage so even though the stool is soft there might be harder poo on the sides of the bowels. Causing her to strain for what appears to be no reason. Constipations a big factor with babies born with ARM's it's just been trial and error for us keeping on top of it. As we've learned to do the enemas it's really helped to clear a blockage and it helps dd feel better almost immediately. ALSO...movicol can cause wind...which can make them think they need to poo or push when they don't. I still give her a teaspoon of gripe water from time to time and paracetemol if she needs it. Dont forget its all new inside and out.

Hi sammy..A pull through is the nickname given for my dds op. Basically they cut from vagina to the top of the bum cheeks, and re sighted the fistula and created a hole for her bottom. I'm sure it's far more complicated than that though but I wouldn't know where to start. lol

Hi Rachel, Thanks x

Big kisses to all of your dcs.

Hi All,

Sugarbea, I know what you mean. Don't think there's a doctor or nurse in that place that hasn't met us :) That must have been hard work, changing her in the bath every time, but whatever works, as you say. Can't imagine that with our dd, she absolutely hates the bath and screams the minute you lower her into it!

I think the full sachet of Movicol might have finally helped our lo a bit. She has done some big poos today and has been straining soo much less. She's been quite happy today which is so nice to see and we have managed to go out for a few hours this afternoon which was lovely :) I think it helps if she's distracted as well, that's why it's such a catch 22. You stay at home cause they poo all day and the less you do the more bored and unhappy they are anyway.

I hope she's getting a bit better now and it won't just be a one off day. We're back to using Orabase now and are getting on quite well with it. I'm putting stoma powder on the raw bits first and the the Orabase over the top. She doesn't seem to mind being wiped quite so much so maybe it is getting better even if it still looks sore.

Sammy, I didn't get on that well with the Ilex so far even though everyone raves about it, which is why I have reverted back to Orabase for the moment. However, it looks like a tube might go quite a long way, although I suppose it depends on the severity of the nappy rash and the area you're trying to cover. I probably wouldn't go mad buying it though before you have tried it out and find it's working for you.

How's Lucas getting on? Have you got a date for the surgery now?

Mrs Simon, how's your little one today? Any improvement? I really hope so.

Rachel, sorry to hear Ella caught the chicken pox! Hope she doesn't suffer too much. It's horrible being stuck indoors all the time, makes it all worse :(

Speak to you all soon
Love
Krautmum
xxx

sugarbea thanks for explaining that the bath sounds like its working for you. i used orabase when lucas new born as he had a lot of bleeding in poo and was very sore and found it brilliant. Its great having all this advioce for when lucas has reversal
Krautmum they cant operate on lucas till his bug is gone and they also have to have a bed in ICU so they said within the next 3 weeks. I was chatting to friend i met in hospital who lil boy had reversal and she said things are so much better with bum after 6wks.
Hairymelon how the bag changing going hope you are getting a couple of days
hope all lil ones doin g well hugs xxxxx

Hello to all. Hope all LOs are improving.

Krautmum - Am so pleased things are getting better for your daughter. We have had a similar improved day. Bottom is looking less red but I will try the stoma powder tomorrow on some of the redder patches. We have also been out in the pram which seemed to make an enormous difference - an hour and a half of general contentment and smiles - what a wonderful change that was.

We have noticed a lot less straining today and fewer periods of pooing although it seems to kick in after meals for about 45 minutes. We are using paracetemol and ibruprufen to manage any pain. Terrible night last night though, pooing and crying every few hours.

Sugarbea - should we expect this for 2 1/2 months? How long was it before your LO was feeling noticably better.

Am finding this thread enormously helpful - thanks to all for such supportive comments. Hope all our LOs have a good and quiet night.

xx

Hi Mrs Simon,

Glad to hear you had a better day too. I think a change of scenery definitely helps everyone :) I hope things will keep getting better.

We had a terrible night. First dd was waking up and pooing a couple of times, then wouldn't settle and was screaming. This then woke ds up (he's 2 1/2). He then kept waking up and calling us until he eventually woke dd up again. She obviously pooed again. By this time it's 4 in the morning and we're on 3rd nappy change and 2nd bottle (only thing that settles her). So as not to wake ds again we had to bring her into our bed, which we never do, and had at least some intermittent sleep until she was up at 7.30. Really hope this was a one off!

Also have the problem of her straining/pooing while she eats, which then puts her off eating, poor thing. She really needs her food. Well let's see how the day progresses...

Have a good day!
x

Hi Sammy,

Just wanted to say, hope Lucas gets over his bug soon and they find a bed for you. I suppose it's another question of waiting and seeing win terms of his blockages. Hope they can close the stoma, but the main thing is that things are definitely ok before they do. You don't want a stoma reversal only to find the have to create another one again later.

Good to hear that your friend's little boy felt better after 6 weeks. That seems manageable, although the last 2 weeks already felt like an eternity...

Speak to you soon
xx

MrsSimon My dd didn't have a stoma so she was healing from her op at the same time she was pooing from her new bottom. I had to keep the stools really soft because if she strained she could of done herself serious damage. So for her it only started looking better (to me) after 2 1/2 months because her bottom had healed properly. She's the only baby i've heard of not to have a stoma which means she was quite lucky, but it's possibly one of the reasons why her first pullthru was unsucsessful, her bottom never got a chance to heal before she poo'd through it.

Krautmum my dd also used to poo when she ate. Not sure why, maybe something to do with a sensation in their tummys. She doesn't do it anymore though. She also only settles with a bottle in the night and after everything she's been through she can have whatever she wants. :0

Sammy hoping lucas feels better soon. Have you had experiences with PICU before. My DD was there after her first op because she was too young to have morphine on the ward. Is he in scbu now?

hi all thanks for warm wishes xx
sugarbea lucas is in a normal ward sorry dont know what scbu means i dont have any experience of icu but it looks like he will go there after operation
krautmum i wish he got over bug and stoma started working better so he be sent home for a few mths before operation highly unlikely but hey we live in hope. Its mad never ever thought ide say that but dread reversal in case he gets more blockages. I know ill be nervous with him regardless. hope your having a better time of it Mrssimon and Krautmum xxx

Hi to all

Sugarbea - our ds originally had his bottom moved and no stoma. Unfortunately all his stitches came out very quickly and as he was pooing on the new open bottom wound it got horribly infected. A week later he was back in for a stoma to give his bottom chance to heal. Very reassuring that your dd now doesn't strain at mealtimes as this is awful at the moment - especially because our ds is tiny and has a small appetite - it doesn't take that much to put him off his dinner.

Krautmum - we also had a very terrible night after yesterday's upbeat day. We must have been in every half an hour for the whole night. Today he has been shattered due to no sleep but again the day has been a bit easier. Unfortunately his stoma wound is now bleeding a bit - we have no idea why. It's not much but we are now worried that all the straining has affected it.

Tomorrow we are off to the hospital as ds has a lump under his armpit apparently due to his BCG jab. I can at least get the doctor to have a look at his wound and bottom - although it won't be a bottom man (if you know what I mean!) I hope if it is worrying then he will at least send us to A&E - either way it will be good to get another medical opinion.

Sammy33 I really hope your ds is getting over his bug.

Hopefully this week will see lots of improvements and a bit more sleep for all.

xx

got text off friend who's little boy had reversal 6wks ago she used metanium orabase and vaseline mixed in equal amounts said her stoma nurse adviced her of this. She said it worked well bum was very bad but is so much better now.
mrssimon good luck tomorrow with doc and let's hope doc has some cop on. You just reminded me lucas needs second set of injections.

Hello all,

Just wanted to pop in and say HI. All of what you're going through brings back so many memories of when Cerys was little.

I just wanted to give you all a bit of encouragement and let you know it does get better, even if it doesn't feel like it now! Cerys is now 3 and despite her problems she is still a little treasure. Her scar has healed well and she knows it is where her 'poo bag' used to be. She has one sachet of movicol every night before bed which keeps her loose enough depending on what she has eaten - if she has too much pasta for example, we give her extra movicol and we only let her eat 1 banana a day (much to her annoyance!). We had lots of tears around her bottom and regular suppositories but it seems to have settled down now.

I do remember going through the stages after the reversal where everything is so sore and uncomfortable. Sometimes I wished she had kept the bag as it was all so awful! We too ended up at the doctors many times and to this day half of them haven't got a clue about her condition so I feel rather clever telling them! If she gets a cough I demand medicine as quickly as possible as I'm paranoid her new bottom will prolapse.

We still struggle with nappy rash to this day but manage with metanium. She tried to potty train a few months ago and is fine with doing wees but still doesn't know when she is doing a poo until it comes out and she is most distressed! We won't know for some time if she has any control or not but just have to be patient I guess.

She has scoliosis and calcaneovulgus (sp?) in her feet and hypermobility all over and is very slow to walk, can't do stairs etc and tires easily, but makes up for it in character ten-fold .

Sorry I'll stop waffling about her now! Just wanted to let you know that you're not alone and you will get through it xxxx

purplelostprincess lovely to hear your daughter is doing so well and it does help hearing other peoples experiences but you know that only to well. Cery sounds delightful our children really are little miracles
chat soon xxx

Hello purplelostprincess - have read your earlier posts previously. It is very good to hear that things do get better because at the moment it is a real struggle.

Have finally managed to get an earlier clinic appointment with the consultant for Thursday. Jack is not finding pooing any easier and the real problems now are still horribly sore bottom (and he now also has thrush so extra cream for that) and the absolute frequncy of the pooing so that as soon as he is cleaned up he poos again and so we start all over again but with more distress and howling.

The gp wouldn't give us any antibiotics for his weepy wound but he's been given some for his tb lump and so I'm hoping that will kill 2 birds and ward off any infection.

On a better note we are having more happy periods in between pooing which gives us hope. TB lump doctor has also now referred Jack to a dietician as he puts on weight so slowly. Have reviewed all my ambitions for when he's older - I just want him to be happy, weigh more than 8kg and be able to control his poo!

Hoping all improving for everyone who is finding it difficult at the moment.

xx

Hi All,

Sugarbea, it does sound horrendous, having had the pull-through and colostomy reversal at the same time! I can't imagine dealing with the whole sore bum/straining issue on top of a new bottom healing up. You must be so glad that's all over!

PLP - hi again. Great to hear Cerys is doing well and you have things more or less under control. I know what you mean about sometimes wishing for the bag to be back, but then I have to remind myself that this is just a phase and will get better. Cerys is the proof of that :)

Our dd is finding it ever so slightly easier to poo on a whole sachet of Movicol and her bottom is slowly healing up, which makes things a little easier. However, she is still unhappy and grumpy a lot of the time. It's just like having a different
child, which I find quite hard. Hope we get the real one back soon ;-) Apart from her bottom we now have eating problems. She is eating very little and doesn't feel much like drinking her milk either (hard to get the movicol into her sometimes) and she sometimes gags and pushes her food out of her mouth, which she never did before. I might all be perfectly normal, but does worry me as we really need to get some weight on her. Has anyone else had eating problems with their lo after the reversal? now also struggle with sleep ourselves, as dd wakes up a lot. We change her nappy once a night, but she wakes up our 2.5 year old more often now, so we are up a lot :(

Sugarbea/PLP - did your little ones wake up a lot pooing in the night and did they stop at some point?

Mrs Simon - sorry to hear that Jack is still struggling so much. Is he taking the movicol now? also, have you got hold of the Orabase? I just got the GP to prescribe some more, as we use such a lot. WE have found this has worked really well for us. Just Orabase and Vaseline (about half/half). After about a week or 2 of bleeding sores, they have now finally "skinned" over which makes nappy changes a lot less painful for her. Can only recommend it. Hope, once it's all healed up we can keep it under control with normal creams during the day.

Sammy, hope Lucas is over his bug and they have a bed for him soon. Let me know how you're getting on.

Speak to you all soon
xxx

krautmum really hope things start to settle down reversal does seem to come with its own new set of problems. Over the past 4mths i have met quiet a few mums with babies having reversal. It seems to be half have no problems half do. Seems to be they associate feeding with poo and stop. Please god it is just a phase.
lucas has had 2 poo tests that came back clear the last one was sent today and takes 2days to see if he gets all clear. Then they will schedule operation. They are fattining him up with extra calories in TPN he has just shot up he is now 15lb im so trilled he looks great. I hope his humour doesnt change as he is such a jolly lil man that hardly ever cries.
Good look Mrssimon with jacks appointment you are so right about ambitions changing as do milestones Hope things are improving for your lil one xx
hope all babies doing well xxxxx

Hi everyone

Life has taken over a bit over the last few weeks so I haven't been around.

The bags are still only lasting a maximum of 24hrs. Usually we have to change 2 or 3 times a day. Sammy, the absorbagel is brill and the 2 piece bag with vents have made a massive difference. Thanks so much for the recommendations.

But we are still having leaks (because of his changing shape & wriggliness I think) I CANNOT get the Eakin rings to work. I will try the radiator trick- do you mould the rings to fit before you warm them up or as you stick them on? How do you get them to stick on the sore skin? I find they just stick to my fingers! And do you squish down the edges so they are a bit thinner?

DS had a dilatation a while back and needs one more under GA before they reverse the stoma in early May.

I've been weeping catching up with what you and your poor babies have been going through . I hope things get better very quickly for you, Krautmum and MrsSimon. And Sammy, I don't know how you cope. At least DS is with us most of the time and our hospital isn't so far away. BIG hugs to all of you.

My HV has put me in touch with another mum locally whose LO also has Hirschsprungs. I'm a bit nervous about phoning her as I think I might just cry! But I'm looking forwards to having someone to talk to about all this in RL.

Thanks to all of you for thinking of us, will try to stay in touch a bit more regularly.

hi hairymelon
R u using the prepi wipes before rings i find this is brilliant as they are sticky i just place them when ready and hold my hands over it for a minute.I make sure ring is under stoma by using my nail carefully nurse used to use stick off cavalon. i also change his bag while he sleeps when i can sooo much better.
dont panic about phoning other mum i found one through lady on other website and she is amazing support. There is nothing quiet like chatting to someone in same boat. If you get skype pm your skype name and we can chat if you like its free and is a lifesaver. I chat to a mum whos been in hospital with me for mths and her lil girl in england kings hosp waiting liver transplant.
hope things get easier xxx
hope all are well xxx