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 all

Quick post to say hope you are all doing well. Moving tomorrow and last few weeks have been a nightmare with sale/purchase issues so will catch up properly when I have more time.

Rach xx

Hi to all

Sorry we have been quiet. Jack's situation remains exactly the same and we are very despondant about it. He has just had his 4th dilation since his reversal - he was dilated to a 13 (he was dilated to a 16 last month) and he is in such a lot of discomfort as he does his constant poing throughout the day.

Sugarbea how old is your LO? Our surgeon has just suggested we could dilate Jack at home despite the fact that he said that Jack was too old for us to do this ourselves 10 months ago! We said we didn't think we would be able to do this. How do you manage?

Krautmum i did finally get in touch with the BM nurse who suggested Jack might benefit from loperamide which would slow his bowel down and maybe he would poo less frequently. Jack's consultant has turned this down because he thinks it won't help and Jack may get constipated. Currently Jack is on no medication and hasn't been constipated at all for the last few months. The surgeon is now suggesting a further incision to Jack's anus. We are so frustrated that his consultant doesn't want to try anything other than another small operation. Jack's consultant has basically said he doesn't know why Jack continues to poo so frequently and he doesn't really know what to try other than dilations at home every other day or making a small cut to his anus.

So our situation remains that Jack strains to poo through the day (more times than we can count - it could be 40 times) and we feel as though the hospital does not know what to do with him.

Sorry for this rant. We are just so very sad for him. Any words from people whose children are through this stage and now poo relatively 'normally' would be much appreciated.

I hope everyone else is faring MUCH better.

xx

Hi mrs Simon asia is 18 months old now. We have been dilating at home since she was a year. I do it every day with someone else holding her legs while I dilate we are on 12 at the moment due to go up to a 13:14 in august. They are basically metal poles (one end is bigger than the other) and they have to be inserted for a long count of 5 each dilation. By the sounds of it if he was dilated to 16 at the first dialatation and only 13 at the last then the hole is closing quicker than the dialataions. This is what happens with my dd and our new consultant at gosh says it will continue to happen unless she has regular dilatation for an ongoing period of time. I have the option of allowing her to go under anaesthetic to have the dilatation but she has been under 14 times already so I gave it a go. Her old hospital don't train parents to dilate at home as it may be traumatic for the child but gosh has said if we want a good chance of a fully functioning anus it needs to be more regular than a weekly iua. I think it depends on the child. The first time was horrible for all of us but it's become part o the daily routine now. She is incredibly resilient and allows me to do it so far. The hole doesn't narrow anymore than the dilators as it's done daily and doctors think it will maintain it's size hopefully by December (when we finish doing size 14 for 3 months. I really hope they come up with something for you. Apologies for the lack of paragraphs, my iPhone doesn't seem to understand them

Another one here who did the dilations at home - I'd never heard of it being done under GA, we just accepted it was part of Cerys's condition and the treatment. I think we did it every other day for at least 6 months, then the frequency gradually went down to once a week/fortnight etc. We've not had to do it since. We were given white plastic things called 'candles', I believe there are all sorts of different types. Plenty of aquagel always helped and I think the last size we used was a 13 or 14.

I do hope you find a way forward MrsSimon, I know how frustrating it is to have the 'experts' flaffing around when we depend on them to provide us with their knowledge/experience and advice. We were doing the suppositories every other day but have stopped them now based on the fact that the consultant mentioned it was an experiment and Cerys was getting so distressed about it (as were we!). Also, it wasn't keeping her clean the rest of the time so as far as I was concerned it wasn't working. She now seems to explode a few times a day but is slowly getting more solid, not sure if that's a good thing or not as I'd hate her to get constipated again.

I tried to ring the consultant to discuss it but he's away on holiday for now. He has often mentioned that we as the parents are really the experts because we know our children better than they ever could and are dealing with these issues on a daily basis.

Sorry to post and dash, hope everybody else is doing well xx

Hello all,

Bit of background: Our 10 month old son recently had to have a stoma. Having had months of trouble with him not eating and being constipated, we finally got to see a consultant pediatrician who diagnosed anorectal malformation. On further investigation it turned out his bum was too narrow so they need to correct it. To do this he has had an operation (a few weeks ago) to create a stoma; in October he will have another operation to fix his bum; then in January he will have the stoma reversed. The good news is that the doctors seem to think there are no other, underlying, issues and that he should, fingers crossed, be ok in the long run.

The good news: Already he is eating really well and is so much happier, it is very satisfying seeing him finally developing. His 3 yr old brother has started calling him 'Smiley Face' which shows how different he is to before.

The difficulties: We are having a bit of a nightmare with the bags. Prior to the operation we were advised that the bags might stay on for 3 to 4 days. His seem to last for typically 3 to 4 hours...occasionally longer but we are yet to have one last 24 hours. This started in the hospital when professional nurses were applying them and isn't any better now we are home and doing it ourselves. We have tried countless different bags, with and without rings underneath. We have tried duoderm underneath (around the stoma) and also around the edges of the bags. We have tried spray, wipe and stick applied protector stuff (cavillon). We have also tried some powder as an alternative. We have tried cutting the hole very close to the stoma and also leaving a bit of a gap. We always try the various 'tricks' we've had mentioned to us, like warming up the bag seal on ourselves first etc. Regardless of all of this, the poo seems to get underneath the bag and find its way out every time, without fail.

One problem, I think, is that he's small and he's active (rolling, crawling etc) - the sticky bits on the bags all seem to be quite thick and don't contour well with his body when he moves. He likes to lift his legs right up to his body and Im sure it makes the bags concertina a bit, leaving channels unstuck. Whilst cutting the hole very close to his stoma we still had a lot of leakage and also the bags seemed to move around thus digging into his stoma making it bleed. We've started making the hole a bit bigger but Im not convinced thats the right thing to do. I've just sent off for some bags from 'Pelican' which Ive read might have thinner sticky areas, maybe it will help.

Another issue is that he did have two stoma right next to each other but the second is now healing over (doctor not concerned that it is) but there is still a bit of a wound there where the bag doesn't stick well - whether its covered over or not.

We are also now seeing his skin very red and blisters here and there, I guess from contact with the poo?

We are sometimes now trying to just put on protector and then stick a nappy over so we can address it everytime he poos without the whole bag changing rigmarole (which is a art in itself on a 10 month old with his 3 yr old brother snapping around your ankles!).

Any advice? We are very new to this and a little frazzled currently.

Thanks in advance

Welcome PurpleRach, lovely name! You've come to the right place, all of what you're describing about the bags is so familiar and takes me back to when Cerys had her bag. I can't imagine her having it at the same age as your LO, she was wriggly enough in her first 6 months! We used Pelican and they were fantastic, hope you find the right products for you, unfortunately it really is trial and error We tried everything you described and sometimes things worked, sometimes they didn't - I was not sorry to see that bag go I can tell you!!!

Just thought I'd say hello, I'm sure others will be along soon to welcome you too. Sorry I can't offer a magical piece of advice that will work, but I just thought I'd let you know you're not alone

Hi PurpleRach,

Nice to meet you. It sounds like you're going through the same problems we did with our daughter until about 4 months ago. Our lo is now 15 months. She was born with anorectal malformation, a multicystic kidney and a vsd and had a colostomy from birth until about 11 months.

After the first few months we also found it very difficult to keep the bag on for any longer periods. At the end, when she was a similar age to your son, we were using the Eakin Cohesive Slims (I think they're from Pelican as well). They are really thin putty rings and seem to be the only thing that really made a difference. We would heat them on the radiator (or with a hair dryer), as I found body heat was not enough. You then slightly stretch them to whatever size required but make sure they fit snuggly round the stoma.

As our lo's stoma was like a figure of 8, we filled in any gaps with the Pelican paste (in a tube). We then put the bag on, again we would heat the bag on the radiator or with the hair dryer, as this made it more sticky.

With this method we at least managed to keep it on for 24 hours. Although we had to change the bag every day for the last 3 months or so, it meant we didn't get any leaks in between. To clean we used the Appeel wipes, as the putty can be quite sticky and then the Cavilon lollipop stick for the skin barrier. Any sore areas we treated with the Ostoseal powder, although I think you have to be very careful not to apply too much, as this interferes with stickiness as well.

I hope this is of some help. By the sounds of it your son has a "mild" type of anorectal malformation, and it's great to hear that he does not have any other problems. You must be very glad that he is finally diagnosed and the right steps can be taken. I hope everything goes well with his surgery in October.

Good luck with the bags and let me know if there's anything else I can help with

Krautmum
xx

I need help with this stoma issue im having!!!!! 3 yrs later another post to you. my 6 wk old son strummer was born with an inperferated anus. the bags dont stay on weve exhausted putting them on 3 times a day making skin around stoma raw and inflamed. hes very fussy. So now we do no bag its been 2 wks it was a good run. Now skin worse then ever. I need mother of all barrier creams or something to protect that poor skin. too raw to try bag again. Help!!!

Hi there,

Nice to meet you. I'm sorry to hear you're having such a rough time with the bags. The only thing we ever really used was the Cavilon Spray/Lollipop stick and the LBF wipes, which are adhesive remover and skin barrier in one. We never tried to go without a bag, as this to us seemed far worse than having a bag that didn't stay on for too long. For really raw/sore skin we used the Ostoseal powder, but unfortunately I cannot give you any other tips, apart from letting air get to it and keeping the poo off (I know, virtually impossible). I would speak to your stoma nurse and see if they can help you in any way. We found that sometimes we had the right products, but we were not using them in the correct way and once the stoma nurse came round and showed us, things improved. You might be able to get a bag to stay on for at least 24 hours, so you lo's poor skin can have a bit of a rest in between bag changes. I would definitely give it another try.

All the best and hang on in there

Krautmum
x

In agreement with our stoma nurse we gave up on the bags for a while, they simply won't stay on regardless of what we try (and thanks for your suggestions :) ). His skin was becoming very agitated from the continual leaking so we tried just putting on some skin cream and topping that with vaseline to provide some protection. We then put a nappy across it and then another nappy on properly. The skin didn't improve though.

Just yesterday however, the nurse gave us some iLex skin protectant paste. That seems to be working a treat on the skin trouble, it appears to be quite magic! Strumbum you might want to look into this, though I dont think its available on prescription over here (its from the US).

Once its all cleared up we will probably try the various bags again but I dont hold much hope for those!

Hi PurpleRach,

Funny you should mention the Ilex, we used it on our daughter's bottom after the stoma reversal but I wasn't sure if you could use it around the stoma so didn't want to suggest it. I hope the skin heals up and you get some luck with the bags!

Kx

hi purple ranch reading your message is so similar to mine and i have to say the people on this site where my sanity when boy i needed it. Lucas had stoma for about 5mths and we really had such a horrible time leaked so bad and so many changes skin was burnt like it was burnt with a lighter. We had to end up using a protective barrier called prepi-wipes (these where my new best friend seriously protected and stickey too)eakin seals rings shaped like dounuts put around the stoma and then put the bag. Also the other thing that worked for us was changing him in his sleep not as stressfull. I had to change bag to a two piece one with a belt which worked so well i got 3 days before i changed i never waited for 4 days and i chose when changing it instead of being in a sweat. Sorry i have to go hope you are all well ill log on later or 2mor to fill you all in on lucas and do personals love to all xxx

Sorry to interrupt the line of posts but having an awful morning here! We stopped doing the suppositories a few weeks ago as it was just too stressful for both Cerys and I. Also, it wasn't keeping her clean the remainder of the time which, from what I can gather, was the whole point of doing them.

I decided not to reintroduce the movicol because she continued to be rather loose and would explode every couple of days - almost like her bowels had been trained to do so...

Last week I noticed she did a couple of pebbles one afternoon and nothing else, so gave her a suppository the next morning as she clearly needed to be emptied out. She then continued to go every couple of days as before.

The day before yesterday she had a few pebbles and I made a decision in my head to do a suppository yesterday if she hadn't emptied. I'm such an awful mother, I didn't do it as we had lots going on, were moving her room around and coping with this cyst onmy ovary etc. Last night she was straining and said it hurt, so I thought "right, first thing in the morning we will have to do one".

This morning DH got up with her and when I came down late morning, he said she'd been crying and asking for the 'sore thing' as her tummy hurt. I put a suppository in but nothing came out. I could feel there is lots in there and it's hard, but all she did was cry and strain. So after two hours of it, I put another one in. So far she has had two lumps come out, but she's on the settee telling me she doesn't feel well and every now and then she cries and strains. I'm rubbing her tummy and back and lifting up her knees, I'm getting extremely worried now - how on earth am I going to get this poo to come out!? The consultant always said she would have to go no longer than 48hrs between poos, it's gone over that technically. Do I ring the emergency gp? Bless her, I can't bear to see her go through this especially knowing I could have prevented it if I gave her the suppository yesterday .

Please help! I'm going to copy this into childrens health too...

hi purplelostprincess Dont apologise we all here for each other xxxSorry to hear your having such a horrible time hun i think you should call emergency gp as she seems in pain The only suggestion i have to help you lo go is to massage the anus with the legs up high stimulate the bum. My surgeon told me to bring lucas back in if he is constipated only if he seems in pain stomach hard and swelling and vomiting. Lucas has gone from explosions to every second day living on my nerves is not the word. WONDER will we ever relax doesnt feel like it at moment. Hope things improve keep us posted big hugs xxx

Thank you so much sammy, I was in quite a panic earlier which is very unlike me! She managed a bit more poo after the second suppository but I'm convinced she is backed up and it was just the overflow, I don't think our consultant will be too pleased! We're seeing him on 8th August so will discuss it properly with him then.

In the meantime, I'm thinking we could talk to the emergency doctor tomorrow and asking for an enema, yikes! I've never administered one before, but I'm worried she needs a good clear out, poor thing! I've been suffering with constipation with all the painkillers I'm on at the mo, but not half as painful as her, so I really sympathise with her!

Thank you so much for being there

No need for thanks hun you all have kept me sane when i felt like i was going to loose it. Dont feel guilty about not doing something like giving suppsitries or not we all do what we think is right at the time in the best interest of our children.Thats all we can do is try our best . It is always a guessing game when it comes to kids. I hope you get a doctor that is usefull tomorrow hope things improve. Your lo is a very lucky to have such a great caring mum xxxxxxxxx

PLp sorry I missed this. I give our dd enemas regularly at home if shes blocked ever since she went in with faecal vomiting . My dd doesn't protest too much but she's used to them. We use something called micro enemas. Do you think you might be able to get an x ray of her tummy before you see the consultant? How long ago did you stop the movicol? Hope she's ok xx

sammy, your words have given me great comfort!

Thanks both of you - I've rung the out of hours doctor and we have an appointment at 12.30 so they can check her tummy and hopefully give us a prescription for an enema. There's no sign of any poo this morning but I'm reluctant to give her a suppository when she's so happy!

We're then going on to my parents and I'm cooking them a full on roast so we won't be home until bedtime this evening. If I can pop on beforehand I will, but if not I'll update tonight

I've copied this over as it was a big post, sorry! Just thought I'd update you all... Not exactly our choice of things to do on a Sunday afternoon, but all is well now.

Well, that was an adventure to say the least!

I honestly thought I could speak with the out of hours doctor, let them examine her to confirm she was backed up, get a prescription for an enema and go home and do it - boy was I wrong!! Looking back though, it was probably a good thing...

Turned up at the out of hours doctors (situated on the ground floor of the local hospital), explained to the duty doctor who examined her. He was a bit vague, but put a call through to the paediatrician upstairs and asked us to wait outside. He then came out with an envelope and asked us to go up to the childrens day ward upstairs. They were a little busy but Cerys was happy playing with all the toys. She had complained of a sore tummy earlier in the day and had done a couple more small hard pebbles in her pull up. It took a while to explain it all to the nurse and we had some forms to fill in etc. Eventually the paediatrian came over and listened with interest to Cerys's history. She asked to examine her, but clearly hadn't understood the extent of the reconstruction I had told her about, as she was shocked at how red her bottom looked (inside). I had to explain again that it was her bowel - they had pulled her bowel down when they reconstructed her bottom grrrrr....

So, after much more explaining, she realised how much Cerys needed to be cleared out - she could feel it all built up in her tummy and agreed that 10 sachets of movicol just weren't going to do the job in the timescale we needed it to. She explained that they usually do the enemas in the hospital and it suddenly crossed my mind that I've never actually done one and I wouldn't have a clue what to do! So I was relieved to have a nurse administer it. Cerys may have to have daily wash-outs when she's older, so I'm going to have to learn one day, but at this stage, she needed an expert.

So they did it, and Cerys was soooooo brave!!! It produced the desired results (maybe desired is the wrong word here though!), and she immediately said that her tummy felt better - phew!!

We will never let it get to this stage again, this was a big lesson learnt! We're giving her movicol for the time being as she seems quite sore at the moment and we're seeing her consultant on August 8th, at which point we will put a plan in place.

Thank you all for being there and helping me through this awful situation - again, this is why mn is so fantastic ime!!!

Hi PLP,

Only just saw this post! I'm really glad Cerys is ok now and they managed to clear her out with the enema. You must have been so worried. Probably best to keep her on the Movicol for now, until you see the surgeon. I hope you can work out a good plan with him, as it's so stressful when you don't know what you're doing. Let us know how you get on.

I hope the cyst on your ovaries is nothing too serious. I know a lot of people have them ( had one myself a couple of years ago) but with some people they need to be dealt with, so hope all of that goes well for you. You don't need anything else to worry about.

Our little one is on a sachet of Movicol a day now, but nothing much has changed. She still poos about 8-10 times a day, most days, without any pattern. If we're really lucky she might have a day with 5 or 6 poos, but very rare. Some days there's lots coming out, other days very, very little. She's having a dilatation in few weeks, which will hopefully reduce the frequency. Let's see...

The good news is, we just found out that her heart surgery has been cancelled, as the echogram at the pre-admission appt showed a slight improvement and it looks like there is some tissue covering part of the VSD. Of course it could change again, but really hope this is the beginning of the hole closing up. It would be such a relief not to have to worry about the heart again, but let's not get ahead of ourselves.

Main thing is, she's really happy at the moment and finally has a good appetite, so will hopefully put on a bit of much needed weight!

Speak to you soon
Krautmum xxx

Oh krautmum, that is fantastic news!!!! What a relief to not have to deal with heart surgery, I truly hope the vsd's grow over completely - they did with Cerys so there is hope!

Poor you, having to deal with so many nappies per day, it's exhausting isn't it! Glad to hear that your lo's eating is improving, that's half the battle sometimes and is very reassuring. Hope the dilation makes things improve...

Thanks, the cyst has been agony, constantly! I'm so sick of either being in pain, or being off my face on painkillers. I'm ringing the ward tomorrow to see if there's a date for my surgery yet - can't wait to get rid of these ovaries!

Hello to everybody else, sorry to have hijacked these last few days - how are you all getting on?

Oh PLp I was thinking of you this weekend so glad she is ok. The enemas my dd has are called micro enemas. No where near as scary intrusive as the ones in the hospital. They look like mini toothpastes and the spout is about the size of a 2 on the hegar scale. You literally pop it in squeeze out the liquid and pull it out the results are instant. I find that dependent on what dd has eaten and what time of day she has had her movicol sometimes she just can't shift a blockage out and the enema just gives her that push and can make her following bowel movements more regular. They are called microlax and well worth having in case of emergencies IMO krautmum what good news about your dd s heart. Ladies do you mind me asking what colour your children's poo is. Sorry probably too much tmi but my dds is still green like a newish baby. Drs haven't commented but nit sure if it's something that coincides with the condition or not.

Hi Guys,

Thanks, yes it is such a relief that she won't need the heart surgery for now. Just had video fluoroscopy today to make sure she swallows ok, as she has reflux and frequent chest infections, but looks like all is well with the swallowing side of things, so at least one thing less to worry about :)

PLP, hope you get your ovaries out soon, didn't realise they can be so painful these cysts. I never knew I had it until they did my scan when I was pregnant with DS1.

Sugarbea,

Our lo's poo is a lightish brown colour, never dark, but definitely brown and not green. Don't think it's something that goes with the condition as such, but have not heard anyone mention poo colour. Best to ask the doctor, although it might just be the way her poo is and nothing as such wrong with it. Let us know if you find out.

Speak soon
Kxxx

hi ladies, sorry for the delay in coming back. Things had improved with my dd and i suppose i was hoping that it would continue (never has before but you never know i guess). The surgeon we saw doesnt really like stomas so is suggesting peristeen. Anyone familiar with it? We have been trying suppositories along with the senna (29ml) nightly but its been 9 days now and really only overflow. We had agreed that if the sups and senna kept on top of it then that was the current plan but its looking unlikely now.

The other problem is shes 7 1/2 and so is totally freaked out by the suppositories and i'm thinking she will be by the peristeen too. So maybe a stoma would be better but there is obviously surgery with the stoma and obviously a lot of other downsides to that too.
Also wanted to ask if anyone has experience of scottish hospitals? Am wondering if we need to come south for mroe expertise?

Hope everyones lo's are doing ok
kxx

Hi, we did try peristeen a couple of years ago when my daughter was about 7, but to be honest she hated it and found it quite traumatic. we then went onto have an ACE stoma and then a colostomy. Feel free to ask any specific questions, my little girl doesn't have a diagnosis except chronic constipation.