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 PurpleLostPrincess

What a story! I can imagine how hard that must of been and I am shocked that they missed it - even a paed - even though you pointed it out. My midwife missed DD's, but I forgave her because there was plenty of poo in her nappy all the time. I'll never forget that pit in the stomach feeling that I had when I first new there was a problem, you must have felt the same. It sounds like you did everything you could of done. I think everyone would have though 'moany baby' if they had had at least two health professionals give her the all clear, and there had been poo.

I can totally relate to the 'bag of emotions'. Sometimes I feel really positive and philisophical, sometimes I think about what could go wrong and cry. Sometimes I try to feel grateful that she hasn't got some of the awful conditions that I've seen children suffer with on the childrens ward, but then I still have those guilty little 'why me???' thoughts, especially when every other baby around me seems to have been born with no problems. I do feel bad for thinking that though. I know how hard we have found it and everything with DD has been planned and scheduled and her health would only be at risk at this age now. So, from where I'm standing now, I think its quite normal to feel like a bag of emotions and even traumatised. I'm glad to hear that you have hopefully got the worse behind you.

So much to ask you...How long were you in at the resconstruction op? How did your DD cope with being nil by mouth? Was it long? Are you hoping that this next op will be the last? There's probablly a million other things I want to ask you byt DH has just come home and I need to put some late dinner on for him!

x x x

Aaaww - glad you two have got together

I totally share all those emotions!! Especially when we were in the cardiac ward - don't get me wrong, she did have heart failure and that was very serious, but we were surrounded by babies with much worse conditions than Cerys. I remember crying to the nurse and he said to me that I shouldn't compare as I'm the one going through this but one minute I was thinking "oh my goodness, my babies having heart surgery" and the next minute I was thinking "at least her problem is reasonably minor in the world of cardiology". As far as the stoma goes, I just felt totally alone and I still feel totally exhausted! Cerys is a very happy baby, especially considering what she's been through and she sleeps through the night etc but I found the weekly trips to the hospital so tiring (as did she). Are you having weekly flush outs of the distal loop?

As far as the questions go, I'll try them one by one, hope I'm not throwing too much information at you...

The reconstruction op itself took about an hour or two but there is of course the anaesthetic etc so it seemed so much longer than that all told. We were home within 5 days on that one and she went straight from theatre to the ward (no Intensive Care which was great). She was on a catheter the whole time and we weren't allowed home until she did a wee without it. She had lots of stitches and it looked soooo painful and I reckon she was in lots of pain so I kept her on regular calpol for a couple of weeks afterwards. The stitches have only just come out this week!! Not sure if it is standard but Cerys's consultant likes to do an 'examination under anaesthetic' a week after the surgery and when she had this, he re-did most of the stitches.

Starving Well, it was 6 hours for the reconstruction but I've been told the next one (reversal) is about 20 hour !!! She normally goes through the night and they generally schedule babies early in the morning so I just set my alarm and fed her at about 4am. She did really well all morning until about half an hour beforehand when she just got really upset. She didn't like the water offered lol!

Lastop? Yes, I'm hoping this will be the last operation and unless we have any other big surprises it should be (they fixed her heart and she has been declared 'heart healthy' now - yay!). I thought perhaps there would be one when she's older but her consultant said she should be fine.

Have you been told if you will need to dilate the new hole once it is made? I personally have found that very difficult and challenging emotionally and I wish somebody had prepared me for it. We've been doing it since a week after the reconstruction and apparently will be doing it for a few months afterwards too

You're right, there are sooooo many more things to discuss and we've now got our very own thread to do it in! I'm in no way an expert but I'm happy to share my own experiences and hope it helps in some way...

((hugs)) PLP xxx

Thanks saggar! If it wasn't for you, I wouldn't have contact with anybody else whose in the same boat as me!! You pointed me in the direction of heartline and from that I found extra special parents - I will always be grateful for that

mrshippy, do you mind if I ask whereabouts you live? Which hospital are you under?

xxx

My heart goes out to PLP and Mrshippy and your little ones and your families.

Hope things get better for you.

I haven't got much that's useful to add, but I had a colostomy for a few years after the birth of my first child went wrong 2.5 years ago. I just wanted to reassure you that those blisters are very common and don't hurt! It's impossible to get the fit 100 per cent correct, as you've found it's a balance between a tight fit so no leaks/sore skin or too tight and blisters (or leaks). The cavillon really helps. Warming up the flange (the sticky bit) helps as does keeping your hands on it once you've stuck it for about a minute. Apeel spray is a must! IT makes taking the bag off painless. Stomas aren't sterile, they are made from bowel and of course poo isn't sterile anyway so don't fret about that.

I wish both Mrsh and PLP and their little ones well for the future.

xx

Wow, thanks spudballoo, thats really helpful to get your perspective as a grown up - sometimes I wish Cerys could talk just so she could tell me whats wrong! When normal babies are crying there's the checklist (wind, hunger, tired, nappy etc) but with her I've had to add stoma, bottom and reflux to the list and I'm still unsure after all these months!

Thank you again and hope everything has healed up nicely for you! xx

Yes Spudballoo, I find that helpful too. When DD cries I worry sometimes that she's hurt her colostomy or the skin around it is irritating her.

Thanks for that PurpleLostPrincess.
We live in Eastwood near Nottingham and are at the Queens. Her surgeon mentioned she needs to have 'lots' of flushouts. Her out-patients ap isn't book until next month and I mentioned to the colostomy nurse last week that we haven't got an appointment book for a 'flush out'. I was a bit concerned so I rang the surgeons secretary to ask her about it and yesterday his registra phoned me and asked me to bring DD in for a flush out today. So she's only had 1 in the two weeks since the op. Maybe today they'll say that we need a weekly wash-out, I would have thought so because her bowel was in use up until the op.

Your nil by mouth time sounds much better than what I was warned to expect. It was over 24 hours at the first op and the next two they have said 2 or more days (on doctor said 5 days!) I'm guessing that they will let me feed her as soon as her colostomy starts working again after the next op. I hate the nil by mouth period. I BF and I find it awful not being able to comfort her without upsetting her because she wants to feed. Second to the over-all horror of having her put under anesthetic and operated on, it's one of the things I find the hardest.

We've found the colostomy a real challenge and are still haven't mastered it. Even las night we got in a real stress over changing it because of the blisters. But thanks to what you and other people have said, I feel much better about that now. I'm trying to look at it as a life-saving thing, rather than something to worry about and find difficult, but it's hard!

DS has woken up now so I've got to go. I can't tell you how wonderful it's been talking to you. Which hospital are you at by the way? Will try and find time to post again later.

Hello again

Just a quick post while DD is asleep and DS is happy.

Thanks for all the info PurpleLostPrincess. I'm one of those people who finds the 'unknown' more worrying than the details, so it's been helpful for me to hear what you've been through, even though things could be different for DD.

It must have been very disressing on the cardiology ward. It must have been so hard putting her through a heart op. Thank goodness she is OK.

I too cried because of some of things I saw on the childrens ward. The was an exteremly disabled girl in the same bay as me. Her body was very frail and twisted and she could really do very little other than move her face. She was unable to talk and at night time she would cry. The nurses were so busy, she was left to cry for quite a while before they could attend to her. One night she was crying, there were children in the other bays crying and being sick. The lovely mum in the bay next door was crying and almost passed out because she was so exhausted. The kindess of the nurses and the other parents trying to jolly each other up and support each other was really humbling. I saw nothing but the best side of human nature all the time that I was in there.

She sounded like she was in discomfort allot of the time. The saddest thing of all was when I got talking to her parents. I asked if they had any other children at home and their reply was "yes, but they've all died". I didn't feel like I had a right to feel upset seeing that poor girl. But, at the same time, seeing your old child, your baby in discomfort and distress is heart-breaking. DD did bounce backk quickly from the first op. It does worry me so much what she's got to go through. But it has to be done and thank goodness we live in a day an age where they can help our little DD's.

How are you feeling about Cery's next op?

Yes, I have heard about having to dialations. I've not been told yet that I will or wont have tgo do this although I think its likely. I would imagine it's rather uncomfortable for a child to have this done? Is that what you are finding hard ir is it just the fact that it;s an unpleasent thing to do? Also, did the catheter make it difficult to handle Cerys after the op. DD should be just under 6 months at her next op and may be crawling by then (her brother was and she's very active).

I hope all my questions aren't a pain. It's just such a relief to talk to someone who's been through this.

x x x

Hiya! (sorry, I've written this over the course of the day bit by bit lol!)

We're with Southampton hospital which is about 40 mins drive away from us (half an hour in the middle of the night lol!). Cerys had weekly flushouts most of the time but a couple of times the nurse said we should try fortnightly - Cerys started straining and I always ended up phoning to go in for one sooner. They were getting mecconium for ages and she seemed to be relieved when they did it. It was quite strange watching her strain and push the poo back up the tube! So are you going in for one today? I always packed everything I needed for a bag change - were you given a little dolphin bag to put all the stoma stuff in?

That poor family next to you, I've been reminded so many times to pull my socks up and have to tell myself that things could be so much worse but I still can't help but feel sorry for myself. That sounds sooooo selfish doesn't it!? I've got so many mixed feelings about the next operation. Partly anxious about leaving the family for the best part of a week (I stay with Cerys and DH stays with the kids); partly relieved as we'll come home without the bag. Partly scared as I've only known the bag and we don't know what her muscles will be capable of. Most days lately I've been ignoring the fact that its happening or I'll go insane! The rest of the time I can't stop thinking about it - sometimes I'm really excited and sometimes I get all emotional and relieved as it marks the end of a rough few months. Sorry I've babbled there haven't I!? Feels kind of good to get it all off my chest though - phew!

I think the worst thing about the dilations is the emotional side, or at least I've found it to be! When Mr Griffiths showed me how to do it, he said categorically "she will scream and it will bleed!". He was very sympathetic and specifically said to DH that mums need lots of support when doing it. He wasn't wrong! She does scream and it does bleed and I do get in a state about hurting her - especially when she's so happy but it has to be done! Sometimes if she's screaming for another reason (tired, teething etc), I'll do it then as it doesn't seem so cruel. Strangely it seems to help as it distracts her lol! Also, I used to worry that the stitches were uncomfortable and perhaps doing it would readjust them - I'll never know really!

Cerys was much younger when she had her reconstruction so I'm not sure how the catheter would have effected her if she had been mobile. It was kind of difficult handling her but I quickly got used to it. I had the added challenge of her wound from her heart surgery which made it interesting! She was just so tender and sore bless her and full of morphene. I can't imagine having to do all of that with her being mobile and have no idea if she'll have one again when she has the reversal. I'm sure they have ways of dealing with it though...?

I've really not been very helpful here have I!? Sorry! Its really not a pain answering your questions, I just worry that I'm not giving very promising/positive answers . It is cathartic (sp?) to explain it all to somebody who has an idea of what I've been through though...

Hello! (sorry in advance if this post is a bit to huge)

Been meaning to write all afternoon/evening but I crashed out with the kids at about 7.30. Woke up and it was 10pm! Ahh well, feel better for it.

It went OK at the hospital and they have said she doesn't need another flush until another months time because what came out was clear. I think DD's colostomy may be slightly different to Cery's. With this one they put a catheter down into her colostomy and pump water through it which shoots out of her old opening. When this was first done, they also put at catheter up inside that opening and it shot out of her colostomy (It was white nuckles around the cot when they first did that! But, it gave me a better understanding of how her colostomy has been formed).

You haven't babbled at all in your posts LostPurplePrinces and they have been so, so helpful to read. Thank you for being open. I was expecting to hear what you have said about the second op and the dialations. It makes me feel more prepared and just hearing another Mum getting through it, not matter how hard it is, makes me feel that I have a chance of doing the same. My DH is the kind of person who doesn't want to deal with stuff until it is right in front of him, I am the opposite and I need time to prepare myself, so thankyou so much for your openess and if it helps you to talk about these things then all the better. You sound like a lovely, lovely strong mum!

I'm sure you're right and they have got ways and means of dealing with active older babies going through these procedures. The nurses see this stuff every day and they were really great last time so I have more faith in them now. I just have to repeat my mantra of "If she's OK at the end of it that's all that matters". It's strange in the hospital. I don't know if you can relate to this or not, but things sort of change every hour. One minute you are thinking "Argghh, I CANNOT cope with this" and a few hours later, that feelings passed and you/DD are OK again. You loose all sense of time in those places. I do the same as you. DH looks after our toddler and I stay by DD's side.

As for your next op, I can totally relate to having mixed feelings. Even though it's at least two more ops away for me, I sometimes let myself picture the joyuss moment when my DD will hopefully, one-day (fingers and toes and everything else crossed) poo out of a bottom!!! It's amazing what you would otherwise take for granted. SOmetimes when I take them to a busy baby group of soft play, I look around the room at all the children and think "Aren't you all lucky to have bottoms" - which is a totally mad thought because for all I know any one of them could of had the same problem as a baby. Do you ever do that?

I have only told close friends and family about her problem. I go to Surestart and know lots of local mums. I thought it would be hard to constantly have people asking about her when I am trying to forget about it. Also, some people can be ignorant about these things and I didn't want to have to even see that as it would anger and depress me. Still not sure I've made the right decision and if she does do a load of trumps, inflating her colostomy bag whilst in the hands of an unsuspecting person, then the 'truth will out' as they say. I'm not massively bothered though. Have you chosen to tell people?

You said "I've been reminded so many times to pull my socks up and have to tell myself that things could be so much worse but I still can't help but feel sorry for myself."
I feel EXACTLY the same. My mind seems to go in a constant yet gradual loop of sadness, fear, anxiety, philosphy, optomism, hope, sadness again. As long as DD is OK, I know I should be using this experience to mould me into a better stronger person. But it is hard.

One last starving question (you've probablly noticed that I have a bit of an issue with that part of the procedures!). After the reconstruction, was it basically after the colostomy had started working again that you could feed DD?

Better stop now before I write another 10 pages! Thanks once again for your posts and for letting me get stuff off my chest too, I don't feel so alone any more x x x x

One last thing, a little anecdote from today...the colostomy nurse put DD's bag on this afternoon after the washout. "Hurrah!", I thought, "that's going to be a 'two-dayer' being put on by a professional like that!". I got home, took off her coat and it had leaked - I was gutted! I then had to change it on my own and I'm sure I don't have to tell you how much of a nightmare that is. Took two attempts and a very long time. But hey, we got there in the end and I suppose that's what this whole thing is about.

Lovely writing to you again LostPurplePrincess x x x

Hiya, sooooo sorry I've not been on for a few days! I spilt juice all over my keyboard but I've got a replacement for now...

So glad the flush out went well. Yes, they are slightly different in that Cerys's bowel stopped about half a cm away from her skin so there was nowhere for anything to go. Apparently the bowel still produces mucus even if it isn't being used so I think thats why we had to have flush outs so much more often. Also, she had mecconium down there that dried up but was loosened when they did the MCUG. Now that she has an opening, she actually does do little tiny poo's which is weird - its just where the poo was in the bag and has somehow found its way down the distal loop.

So glad that I've been of some help to you - I just felt conscious of the fact that most of my feedback was kind of negative when I really would love to say "don't worry, it'll all be easy!". I'm like you, talking about stuff in detail is much easier for me and I ask the doctors lots of questions bless them! Thing is, doctors haven't lived it for themselves so talking with people who are going through it is much more helpful. As far as me sounding lovely and strong, I'm afraid I may be misleading you there lol! I'm pretty much falling apart at the moment but I try to remain lovely at least - thank you for saying that as it really cheered me up! You have no idea how reassuring it is to hear that you feel the same way about stuff.

Aaaahhhh, yes the rollercoaster of the hospital!! I take DH's mobile with me as it has lots of free minutes on it and mine has lots of free texts and have a group of friends lined up who don't mind me ringing them to chat every now and then. Poor DH gets a call from me every 4 or 5 hours or so as I've got nothing else to do! Like you say, one minute things are fine and dandy, then the next its panic stations - its so exhausting isn't it!

Yes, I do look at other kids and think how lovely that they've got things working as they should; funny how we take things for granted until they happen to us! I have told pretty much everybody that we know and they've all been supportive. However I sometimes wish I hadn't said anything as I've put myself under the pressure of having to write big update emails/texts when I just want to forget about it all. Also, I don't like it when people feel sorry for me. Having said that, I don't think I would have got this far without their support and they are all people who are genuine friends and I know how much they truly care. I've got people all over the world who are waiting for a picture of Cerys's first dirty nappy lol!

I don't think you're the only one who has serious concerns about the starving thing - it goes against everything we do as mothers! Yes, I think I was allowed to feed Cerys pretty much straight away but I was only allowed to offer her small amounts and then it built up back to her normal amount. I have no idea how thats going to work now that she is having solids although she's not properly on them - just has a small amount a few times per day. I think we'll just stick to milk at first for this next operation and then slowly introduce the solids when she's ready for them.

LOL at your anecdote - I remember having the exact same experience!!! I was convinced that because the nurse had done it that it would stay on longer but it leaked before we even got home!!! Our surgical nurse actually said to me once that she believes that parents become the experts when it comes to their own children and that all the training in the world can't replace the experience that we go through.

Hope to speak again soon...

PLP xxx

Hi, how are you doing mrshippy? Thinking of you...

PLP xxx

Hiya, I see you signed up to ESP, yay! I'm sure you'll find all the stories really helpful and encouraging as I have done. I got your CAT but I can't reply - maybe if you post on ESP I can send you a pm with my email address on it?

Looking forward to chatting more with you xxxx

Hi there can anyone help? I have a 7 week old son who has an illiostomy, as a result of 3 heart operation he had on the first three days of his life. His Stoma keeps on leaking, we have tried EVERYTHING but nothing seems to be working, we have tried the stoma nurses at Great Ormond Street where he had the ops but no good, we have tried a few different bags but nothing seems to work! the skin around the stoma is v red and sore and the poor little boy is very uncomfortable, please someone help.

www.patient.co.uk/showdoc/26739177/

Hello darlop

The above website is for parents of children with stomas - hopefully this should be helpful to you.

As I have mentioned in a previous thread on behalf of DH, if you contact the IA National Office (either ring or e-mail - phone number 0800 0184 724, email: [email protected]) they will arrange for someone to speak to you.

Is it the bags that don't stick? DH said maybe he could give you some advice? (DH did have an ileostomy).

Hi darlop,

Sorry I can't offer any specific advice on ileostomy bags but hope you find some help on that site or from those numbers. The 'Extra Special Parents' site has lots of other parents who have children with ileostomies and you might find some sort of comfort from talking with other parents who've been through it. Some have mentioned egg white if that helps?

Sounds like you've really been through it ((hugs)). Cerys had her heart surgery at Southampton which was great but I've heard that GOSH is amazing too. Its all so overwhelming isn't it!? Hope your DS gets more comfortable soon. Is his heart all fixed now or are you facing more surgery?

Cerys has her operation next week so I'm not around from Tuesday (possibly for up to a week) but I'm happy to offer a listening ear before or after that. I don't have any answers but just sharing and knowing you're not alone can be a little help.

((more big hugs))

PLP xxx

darlop - how is your ds today?

Hi there bellavita and Purplelostprincess, thank you for both or your reply's, Oliver is facing a few more heart operations, he was born with a complex heart condition, he has dextrocardia, pulmonary atresia and something else not sure the name of (sorry i must sound very dense, but found hard to understand all his problems.
I hope her operation goes well next week, it is comforting to know there are others out there who know what we r going through. I will try those websites xx

PLP - good luck next week. Will be thinking of you.

Darlop - pop over to the message board at Heartline Loads of mums with children with heart problems, some similar to Oliver. You'd be most welcome

Thanks saggar! I've got mixed feelings about it to be honest but I know its all for the best. I'll let you know how we get on when we get home, depending on how many pooey nappies we're surrounded by! Hope you're well? xx

darlop, I second saggar, heartline is brilliant and well worth joining which I'm sure you have already found. I too felt so alone to start with but found great comfort in knowing that we're not alone in all of this. Cerys's problem was quite simple in comparison (she had a large PDA) but at the time it was still very frightening that she had to have emergency heart surgery. I'm beginning to get used to living in a crisis/drama lol! Hope all your DS's future operations go well and like I said, I'm happy to lend a listening ear.((hugs)) xx

Yes - that first proper poo will be well celebrated I expect.

On a bit of a downer at the mo - dd had cardio this week and her pulmonary issues have worsened a little. Being scheduled for an MRI in the next few months to have a closer look.

New photo on profile though

oooh saggar, what a gorgeous young lady you've got there

sorry to hear about the latest health issues though

Awww, sorry to hear that saggar! Hope all goes well while you wait for the MRI - isn't the waiting just awful ! She is absolutely beautiful by the way xx

Yes, I've got friends around the world who want a picture of her first poo lol!

Thank you both. She took that one herself; she's in her posing 'peacock' phase lol.

Will wait for news of poo PLP!