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 Mrs Simon,

Good to hear from you. I'm glad that Jack seems to be a little happier and that you don't seem to need any meds at all! Not so great that he is still pooing so often. I must say we still have the same problem as well. Our lo can sleep for 11 hours in the night and not have a poo in her nappy, but during the day, when she's awake, she still does a poo every 15-30 mins. I would agree that she probably poos slightly less in the pram, but it is so hard to tell. I have relayed this to the BM nurse who in turn spoke to the surgeon about it. He wants her to have another bowel xray to see what's going on with the transit through her gut I believe. This should happen next Tuesday, followed by appt with surgeon. I hope they don't find anything negative, but not sure what it all means at this stage.

Apart from all the pooing she is happy enough and eating quite well again, so think she has finally put on some weight. At least one thing less to worry about. However, being one, she is getting quite a temper, so now I have that to contend with as well! :)

Will let you know how we get on next week and keep me up to date with what's happening with Jack.

Sammy, really hoping Lucas' op is happening today, as planned! Let us know if it took place and what they have done. Thinking of you.

Speak to you all soon
Krautmum xxx

Hi all

MrsSimon and Krautmum - really hope your LO's pooing issues are continuing to improve. Great news K that LO can go all night without going - hopefully the daytime pooing will sort itself soon. I guess that they just aren't used to the whole standing up and feeling the pressure in that area? You guys are doing amazingly well - I only hope I can cope half as well when it comes to Ella's reversal.

Sammy really hope Lucas has his op today - fingers crossed.

Ella currently has a viral infection and DS had a tummy bug at the weekend so we are stuck indoors again - arrgghh!! All I want at the moment is for us all to be well for a while and be able to get out and about again!

Hope you are enjoying the lovely weather

R xx

hi all lucas had operation today and it went really well he had his structure removed and reattached. He then did reversal so hopefully that will be the last of operations. He is in picu for tonight and hopefully back to ward tommorrow thanks all will keep you all informed xxx
hope all well xxxx

just wanted to add a positive note my eldest dd now 18 was born with hirschsprungs diagnosed at 4 months and had a colastomy from 4 months it was very prolapsed . she had a pull through at a year and the colastomy was reversed 6 weeks later . as a toddler she was occasionally constipated , usually when she'd been unwell not enough fluids or been tp parties too many sweets etc it was usually managed with lactulose , although occasional enemas required , fully toilet trained by 2years 2 months . by the time she was 8 she'd realised if she ate sweets etc she had to increase her fibre intake and since that point she's required no further medical help .
it seems a very long time since the shock of being told our baby would have a stoma ( i thought only the elderly had colastomys) and the fear and uncertyainty of what the future would hold , i can also remember feeling very alone nobody i knew had a baby with similar problems . so just to let you all know there is light at the end of the tunnel

good luck to you all

Hi Sammy,

So pleased to hear that Lucas had his op and they did reversal at the same time. I really hope things will go well for him from hereon in! You must be very happy it's all done. Let's hope there won't be any further problems and that the pooing post reversal won't be as traumatic as for our little ones. Keep us posted xx

Rachel, thanks for good wishes. Our lo had 2 hours without poo yesterday afternoon while we were out and again this morning. I really hope this is a bit of a turning point for her, rather than just a one-off. Let's see. Sorry to hear your little ones are struck down with bugs again, it sometimes is relentless. We had that all autumn/winter, but at the mo good on that front, so at least something. Hope you can enjoy the gorgeous sunshine soon!

Hi freesias, nice to meet you. It's great to hear that your daughter is doing so well now and can manage without medication. My daughter was born with anorectal malformation and I'm not sure how the stats compare with Hirschprung's when it comes to constipation/incontinence, but I hope she will do as well as your daughter. As you say, there is hope! :)

Speak to you all soon
xx

Hi to all and welcome freesias - it is always good to get some perspective on longer term outcomes as I get so bogged down in what is happening now and can't imagine things improving, so thank you.

Sammy I am thrilled that Lucas's operation has happened and have everything crossed for a good recuperation. Wow you must be so relieved. Please keep us posted on his progress.

Krautmum am so pleased your daughter is pooing less frequently and also pleased your surgeon is investigating. We have had a dreadful week - throughout the day Jack has been pooing non-stop - more than ever - and we have had 2 A and E visits this week because we were just so worried about him and he was so unhappy. We had already put him back on his lactulose and today they quadrupled the amount to see if that would help him do a poo. Poor little angel, the hospital tried to give him a suppository to help him poo but he is now so freaked out about anyone touching his bottom that they couldn't get it in. Jack's surgeon has finally now agreed that this isn't just his bowels settling down (finally) and is going to dilate him and investigate his bottom on Wednesday next week to try and find out what is going on. We are gutted because we really thought all the dilations and anaesthetics might be over but also quite relieved that they are now offering us some help.
I have asked for movicol but am turned down every time on the grounds that he is too young (???!!) and that it would give him abdominal pain (again ???!!). Both seem odd reasons given other experiences on here. We are cynically surmising that Manchester can't afford movicol and so just give out lactulose but would be happy to be proved wrong. I also asked for an xray for Jack but our surgeon said he didn't need one.

Sorry for the long post and rant but it's been a horrible week and Jack has had such a rough time.

Best to all xx

Sorry Rachel, forgot to add that I hope both your children are feeling better.
xx

Hi Mrs Simon,

I'm so sorry to hear you've had such a rough time and poor little Jack. I can imagine how disheartening it must be to have another GA looming & another dilatation. It's good though that they are investigating, as it can't go on like this for either of you. I really hope they find out what it is and can sort it out. So do they think he's not getting enough poo out, even though he is pooing all day? I can just imagine how miserable the poor thing must be. I really feel for you. It is strange that they refuse to give you Movicol. I know it's not normally given to little ones, but then they are not "normal" kids, which is why my lo is getting it at 12months. As you say, it may well boil down to budgets...

I really hope they can help Jack next week and that things will finally improve for you, so you all get some respite.

We've luckily had a good day. Our daughter had another 2-hour period without poo today while awake, which is great and she's overall quite happy and pooing a bit less than before. I really hope it stays that way and wish you will be in the same place very soon too. If at least they're happy again, you can deal with all the poos much better. All the best and keep me posted on how you're getting on.

Stay positive!
xxx

hi all lucas is back on ward and doing very well he is very out of it on loads pain relief. its a good job really as he not looking for food as asleep most of the time. Im diying to pick him up and hug him but have to settle for holding his lil hand. i am so delighted still cant beiieve it he has no bag. Now the waiting game begins again waiting for poo seems to be my only topic of conversation lately. will keep in touch and let you know how he gets on
Thanks for all your lovely thoughts and prayers xxx
rachel sorry to hear your lil one's sick again hope it doesnt last too long
krautmum glad your having a better time long may it last
Mrssimon horrible that your having such a rough time doesnt make sence that they wont let you try something different.glad you got to see surgeon and they are trying something new hope it works for jack
Fressian hi so nice of you to let us all know there is light at the end of the tunnel thanks for sharing your story

Hi Sammy,

Really pleased that Jack is doing well under the circumstances. Let's hope he is pooing soon so he can start eating. Hope it all goes well. Isn't it so strange when they're little bag is gone. We can barely remember it now, despite the scar. Let us know how he gets on

Hi all

MrsSimon so sorry to hear Jack is having problems - really hope the investigation helps to sort out what is causing it. It's a shame about the Movicol situation - will they try something else instead of lactulose/movicol?

Krautmum glad to hear the daytime pooing is getting better - hope it keeps improving.

Sammy so glad Lucas is doing well and hopefully that's the last surgery for him. Hope he can eat soon and post reversal isn't too problematic and you can finally get him home!!

Freesias thanks for your post it is great to hear from someone who has come out the other side of all of this. Great to hear your DD doesn't have any long term issues.

Ella getting over her viral thing thankfully although we had the worst bag issue ever this morning! It had come completely off overnight and she was covered - joy! Never had it happen like that before - I think her tummy is still a bit upset and that combined with excess wind popped the bag off! Thankfully I was in the shower when DH discovered it...... :)

Have a good weekend all

Rach x

thanks all lucas poo twice so far but they not feeding him yet so excited to see poo at last He didnt have a good day so far high temp belly distended and heart rate high fright of my life Anyway they scaned him all looks well he pooed and then settled belly still disteneded but not as much as earlier thank god. Not having a good day all round so upset knew it would hit me but once it did i havent stopped crying headache now ahhhh
thanks for all your support hope all well
xxxx

Hugs sammy. It's a big op on top of everything else you have been dealing with so totally understandable how you are feeling.

This is the start of Lucas' road to recovery - it will take time but he will get there and you will have your gorgeous boy home at last and be able to start family life with him and the rest of your lovely family. One day at a time hun - please PM me if you need a shoulder.

Rach xxxxxxx

thanks rachel he had a much better nite and he poo twice this morning They going to start feeding him tomorrow all going well. will keep you informed thanks again all xxx

Hi Sammy, Sorry to hear that Lucas has not been well, that must be really scary and stressful. Good to hear that he is pooing though and that it looks like everything is ok from the scan. Hope he can start eating tomorrow and that his distended belly will go down. It's the beginning of a new chapter again and although it will be hard at first, at least you're moving on and I really hope Lucas will finally be able to come home with you. All the best and let us know how he gets on tomorrow. All the best xxx

Hi Sammy, really hoping that Lucas has had a good day and that he has eaten today. All good towards him coming home with you. I'm not sure how long he has been in hospital but I hope he'll soon be well enough to go home.

Jack had a dilation yesterday, sooner than his wednesday appointment because he was just becoming increasingly distressed and not pooing at all. His surgeon said that his bottom and tubes were all fine and dilated well and he thinks that Jack is holding poo in because his bottom is so sore. Some pyschological issues about pooing at 18 months. Given he has never had a happy poo it may well be true. Since his dilation he has been pooing like mad and we had to change him 6 times last night! We are now madly trying to keep him clean in a bid to make pooing less painful and have secured some orabase from his old stoma nurse.

Krautmum I hope all goes well with your appointment tomorrow, please let me know how you get on.

Rachel I hope your LOs are feleing better and you're able to enjoy some of the sunshine.

xxx

Hi Mrs Simon,

Poor Jack and poor you, it sounds so traumatic. Good thing is that his anus seems to be big enough and all good to go, downside is that he still finds it so horrible to poo. As you say, it's probably the soreness that makes him hold it in. It's understandable, seeing as it probably hurts like mad every time he poos. Make sure you get some more Orabase. I just went to see our lo's GP and asked her to prescribe it, as well as the Orahesive powder. Now I can get in on repeat prescription. We go through it like mad, but it has helped heal her bottom up and it's now looking very good. She seems to be finally finding the pooing less distressing and has more and more longer intervals between poos. I really hope Jack gets to that point soon too! How long has it been since his reversal? It took us 6-7 wks to finally see a definite improvement, so maybe it just takes a little longer still for Jack. All the best and let me know how it goes. I hope you get a good night's sleep, changing him 6 times sounds horrendous for all of you. Will let you know how we get on tomorrow.

xxx

Hello there
I've not read through the whole thread so am not sure if it's already been suggested. I sometimes use a site called C3Life because my Mum is a new Ostomate and has needed support - I know it's different to having a little baby with an ostomy, but there are tons of fantastic people on board to help. They also have a clinical panel that answer personal questions (all for free). Hope that helps. Google the name and it'll bring you the link x

hi all lucas has had a bad day today they didnt start feeding him as his ng tube down nose to tummy still green stuff coming out then he vommitted and seems very distressed and in pain surgeons had to come and look at him 3 times. really feel like shit as mum up there as i had to come home as ds had an award ceromony in school.He has autism and adhd and they have a reading challenge in school where they read books and get tested on computer he has a new lease on life. He never wins anything and he got a glass trophy for "outstanding achievements reading challenge" 84 books read and passed test only 3 given out whole school you wanna see his face. I am a very proud mum. But all the time sitting there i panicking over lucas as he really miserable just wanna scream my poor lil man. Mrssimon lucas is in hospital over 5mths he has only ever been home for 4wks.Nurse made a mix of orabase subocream and silcocks base.hope jack poo settles xxx
Krautmum thanks good to hear things are settling down long may it continue s thinking of you all xx hi loonietoonie welcome thanks for advice

Hi Sammy,

So sorry to hear Lucas is not well, you must be very fed up after all this time, especially as it looked like things were on the up with the colostomy closure and everything. Horrible when they have bile coming up and feeling so poorly, we've been there and I know what's it's like. You must be very proud of your son, having won the reading award :) It must be very challenging to have 2 kids with health issues, so give yourself a big pat on the back for coping so well! Really hope things will get better for Lucas soon and you can keep his bottom from getting sore.

We've had dd's bowel xray and appt this morning. Surgeon said it all looks ok, apart from her rectum being a bit big, but then she did do a big poo after the xray so that may account for the enlarged rectum. He seems happy with her progress, as she is not pooing as often now and does not get distressed now, so let's hope it will all continue to go well from now. Will let you know.

All the best everyone and let me know how you all get on
xxx

Hi Krautmum

Am so pleased your daughter is getting better, it does give me such hope. After one day with the orabase and having shifted so much poo since the dilation that he's now trying to poo a lot less, Jack's bottom does look an amazing amount better. He is still really distressed when he poos but I think some of that may be exacerbated by the dilation. Last night he didn't poo at all and slept through which has given us all extra energy.

Sammy I am so sorry that Lucas is having a difficult time. When Jack was in hospital it was a real struggle to get through and so how you are managing with another child and such a long hospital stay is amazing. I hope you have a really good support network nearby and that Lucas begins to improve. What a huge amount you have both been through.

Loonietoonie welcome.

Best wishes to all

xx

Hi all
Will re read all posts after posting. Just wanted to get this out the way first.
My DD was rushed into hospital on the weekend after becoming very sick all of a sudden and before we knew it was vomiting faecal matter. Though she'd been pooing (straining) but still decent amounts of poo her bowel/abdomen and upwards were all blocked. She was lethargic, non responsive, had laboured breathing and had we left it a few hours to take her to the hospital she could likely have died of poisoning. She had emergency fluids, iv drips, nasal tubes, antibiotic and rushed to surgery to have and eua colonic lavage and dialataion. She thankfully is now fine and we came out of hospital today. (mainly because she was seen as an emergency at our old hospital and not great ormond street as there wasnt time to transfer. )
It was the first time she had ever had an x ray of her tummy and it showed blockage that had probably been there for months even with 1 1/2 to 2 movicol sachets a day and enemas. The doctors think that she was pooing through the blockage whick is why there were no warning signs like not pooing. I don't want to scaremonger but please all of you be aware that they can be blocked even when pooing. We could have lost her this weekend, we didn't know what to look out for , no one told us this was possible if the child can still poo.
Anyway like I said we are back home and she is purely amazing. As is nothing has happened. Will read back through everyones stories so far. Hope all your Lo's are well x
A very exhausted sugar x

Hi Sugarbea,

I was really shocked to read your account of what happened to your little one. As you say, you don't expect anything as serious as this without any other warning signs first. I can't imagine how scary that must have been. I am really glad to hear that she is already home again and fine. It makes you wonder how you are supposed to know what to look out for. Did they give you any advice when you left, or is this simply sth that can just happen? Are they going to do regular xrays?? Glad that our little one just had a bowel xray yesterday! Think I will mention it to the surgeon next time I see him and ask what he thinks of it. Hope you will all be back to normal soon and ok from now on.

Mrs Simon, so glad to hear that Jack's bottom is getting better and that he has managed to sleep through the night. I could never cope very well when I had not slept properly, so that helps. Even though we still have a way to go, when I think back to how our daughter was 4 weeks ago, she is soo much better now. I always have to remember that, so that I realise things are improving and will hopefully get better week by week, even if there might be some setbacks. I hope for you that Jack is turning a corner soon and you will get your happy little boy back. Although it may not seem possible now, it will get better. Glad the Orabase is working for you, make sure you stock up on it!

Speak to you all soon
xxx

Hi Sugarbea

What a dreadful thing to happen, am really pleased your daughter is home but cannot imagine how scary that must have been for all of you. I asked our hospital for an xray for Jack last week as we just didn't know how blocked he was. He didn't get an xray but did have a dilation and that has definately unblocked something as he is now pooing far more normally - in fact pooing properly in terms of amount possibly for the first time in his life (18 months!).

Krautmum we are now 6 weeks since Jack's reversal and sometimes we think he's improving and othertimes not. Definately smilier in between but still upset during poos. On the plus side nappy changes are now fine because the magic orabase cream has healed his bottom completely. I am utterly bowled over by it and the speed with which it has transformed his bottom.

Sammy hope you and Lucas are doing ok. Please let us know how you both are.

xx

hi all lucas is doing so much better he started feeding yesterday and is up to 90mils already. Pooing loads bum starting to get sore but he isnt too cross yet. His scar is healing nicely and surgeon said if all goes well they will take out broviac out of chest monday and tuesday as he should be off tpn by then. And once he on full feeds can go home he is coming home soon cant wait
sugarbea you must have got such a fright i know lucas has has so many close calls its amazing. i can see myself being so nervous with lucas when i get him home.
mrs simon great that orabase working long may it last xxx
krautmum hope your lil one ok
rachel how you ding your babies still sick