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 Krautmum

Lucas was 2wks in special care unit when born from low platelets and then blood in stool vomiting and loosing weight he was 4wks early 7lb 10. Anyway he had 2 platelet and ivig transfusion and they thought the blood in poo was from low platelets and vomiting reflux. We were sent home on meds for both 4 wks later he started vomiting poo belly bloated out. Surgeon said he had a blockage in bowel and needed to open up to see what said didnt have time for tests needed to run. He went in and said it was a band caught around bowel called a adhesive didnt know how it came to be as normally these are caused after surgery and he hadnt had any. They said they cut it and all should be fine. He ended up getting an infection and needed blood transfusions and infection came out through scar and caused a cist. He then started vomiting boil and had scan which confirmed another obstruction. This was his second surgery and 4hrs later surgeon came back and said he had loads and loads of adhesives all over bowel and could not fix it at this stage as he would not be strong enough. He came back with an ileostomy and they said they will go back in at leat 3-6mths to finish repair and if they can do reversal but its not likely. They might have to do more than 1 more surgery we have to wait and see.
lucas is now 14wks and weighs 10lb 1oz his output was better today than yesterday hopefully he on right track
Its pretty scary thinking about surgery ahead im trying not to think about it.
Im sure youll cope really well with reversal considering youve coped so well with stoma its amazing what we can do when its for our kids
hope all goes well for your daughter thanks for chat
xxxx

Hi Sammy,

It's amazing how many different things there are out there. You always hear about things you never heard of before. It looks like you have quite a few more difficult months ahead of you. I hope all the surgeries will go well and they can reverse the ileostomy at some point soon. It's the thought of it being ok one day that keeps you going.

All the best and let's hope Lucas will do a bit better every day.

Speak to you soon
Krautmum x

hi krautmum

it is amazing the amount of different stuff but good job as we all so different. I met a mum the other day on ward baby had reversal she has a friend that i have been chatting to on other website and she told her to look out for me and she very kindly did. Anyway she was really nice gave me lots bits and pieces that she doesnt need and we going exchange numbers to stay in touch.

will be in touch soon xxx

hi krautmum

it is amazing the amount of different stuff but good job as we all so different. I met a mum the other day on ward baby had reversal she has a friend that i have been chatting to on other website and she told her to look out for me and she very kindly did. Anyway she was really nice gave me lots bits and pieces that she doesnt need and we going exchange numbers to stay in touch.

will be in touch soon xxx

hello kraut, sammy, mrsh, rachel and everyone else on this threat,
i am posting on behalf of a friend, i believe she could do with some support.

what i'm going to do, if you don't mind, is send her this link with the solemn promise that you will all help her out if she is brave enough to come on. it's great to see you all supporting each other, i hope that your babies continue to be beautiful and filled with good cheer (and sleep well...)
thanks in advance.

Hi my little one is much older but send your friend over we might be able to help xx

will do, thanks. from what i understand she is coping brilliantly, but we could all do with support from people who really get it, iykwim?

Gosh of course please tell her to come on over - it is soooo overwhelming in those first few days and weeks but it does get better and the stoma will settle down and after a while it is second nature changing bags and becomes very much part of them.

Please send her a big hug from me and if she doesn't feel up to posting on a thread please ask her to PM me and I will be more than happy to help.

Hope everyone else is doing well. Sammy how is your LO doing now - really hope he is out of hospital and you are settling back into family life?

Krautmum I am exactly the same as you - so used to the stoma that the reversal scares me silly!!

Rach x

i have it on good authority that she has peeked at this thread... now, come on woman, post. they won't bite. (do not go on AIBU just yet, though. )

thanks rach!

Yes avoid AIBU - there are some real piranhas over there!!!

Welcome to Aitch's friend and Aitch you are obviously a very lovely friend to have :)

aha she is actually a v v good friend of my sil, but i have met her a few times (mostly drunken).

hi all lucas still in hospital really having a rollercoaster of time have finally sorted bag using a two piece hollister bag eakin rings and peri-prep sensitive non sting protective film wipes are amazing instead of cavalon and still using orahesive and a belt stoma nurse made so we are having 3-4days whoooooo. Am managing ok at changing bag they are also using AbsorbaGel in bag which thickens poo to prevent leakage its brilliant emptying bag every 2nd feed 6hr. His output has finally started to leason so they have increased his feed from 40mls to 55 and 65 tomorrow and he is only on TPN for 18hrs instead of 24hrs.
They did a loopagram tues and found more blockages in upper bowel colon so looks like we will have stoma for a long time will be big operation. Dont mind that as long as he can come home. They going to repeat scan tomorrow and also doing sweat test for CF so more worrying time. Hopefully it will all work out ok
Thanks for all your support and for anyone not sure about joining us take the bullet i am so glad i did feel so much better knowing not alone, chat soon xxxx

Oh Sammy I'm so sorry to hear he is still in hospital and you are having a tough time. Must be a nightmare trying to balance his needs with your other DC's - really hope you have some good support.
Hope tomorrow goes OK - will be thinking of you.
PM me if you need a shoulder.
Rach xx

thanks rachel am blessed with great friends and family for support. They scanned lucas today and because he still had some dye in him from test tues they have to wait til monday to repeat. The CF test is not until tuesday so have to wait and see. He is doing much better with output and bag still doing well, Could someone explain whats hirshsprungs disease to me please

thanks again

HD is where a section of the bowel is missing ganglion cells so it does not have any peristalsis it can effect a short section just involving the rectum or it can involve a larger section of the large bowel and sometimes the whole of the large bowel .... Someone will probably be able to give you a better description but thats it in a nutshell xxxxx

Hi All,

Nice to see some action on this thread :)

Welcome to any newcomers! I'll be glad to be of any help if I can.

Sammy, great to hear you can finally keep those bags on and he is doing well with his feeds! I hope the test results will come out ok, but I can imagine it must be a worrying time for you. I hope everything goes well and you can take Lucas home soon, that makes things a lot easier.

We have finally had some good news yesterday. After lo's stoma prolapsing again on Tuesday (I think this is the 5th time!), the surgeon had another look at her bottom yesterday and tried out a couple of the Hagar probes and he thinks she is finally ready for the stoma reversal. If all goes well and she won't be ill again, she'll have it done in 2 weeks, just before turning 11 months. I can hardly believe it after nearly a year with the colostomy. The great unknown is ahead of us but we're finally making a step into the right direction, so really happy.

Speak you all soon
Krautmum xxx

aitch, feel free to message me. DS was born with HD in 2007... 3 days old when things really started to go downhill.

In fact he is about to celebrate his 4th birthday on monday and today had his friends around for a little party.. a party we thought we would never see 4 years ago .

Please feel free to ask me more and also ask your friend to contact me..

(will post this on both this and the health section in response x)

PUMBA,you are right with your description btw .

i didn't know that, shhhh, thanks so much, i hope she does get in touch with you. the birthday party sounds lovely, what a huge relief and an amazing result. i'm going to get SiL to point out thread once more, and then leave it up to her to post. there must be a lot to take in right now, thank you all so much for your offers to help her through this bit of the process.

aitch, yes it is a huge relief with ds. We do still have ups and downs BUT atm its mostly up's.

When we think of what he went through 4 years ago, quite sad.

Your friend is welcome to email me ([email protected]) if she doesn't want to come via mn.

Thing is when I had ds I was already aware of mn as I had become a member a 2 year or so before when expecting dd.. BUT when things were wrong with ds at 3 days old I really wanted to bury myself .

I didn't want to google as ds's consultant told me not to, he said I had any questions he would answer them and tbh he has always been very honest with me and dh. Im the type of person who wants to know, if they try option 1 and it fails what is option 2. I always wanted to be prepared..I guess prepared for failure.

So what Im saying is that, when ds was born and esp when we had no idea what he had (diagonosed at 5 weeks) I kind of wanted to keep my family in my own little bubble. I felt we could have lost him at any moment.

Maybe your friend is similar and fears coming onto forums is admitting and finally coming face 2 face with it iykwim.

She needs time and believe me, she will get through it..

Im about anytime x

hi hope all are well

Krautmum Great news have seen a lot of people in my 11wks in hospital come and go and have seen many reversal and so far all went straight forward in and out in 5-7 days. Was advised to put poo on lucas bum for 10mins every 2days to get bum used to poo and then everyday. Nurses say they have burns if not worth trying also stoma nurse told me she gonna give me name of cream for after reversal for bum order from the states.
If theres anything you want to know ask as next to me had reversal so can ask for you .
SHHH great story to read really nice to hear party sounds lovely xxx
Aitch really hope your friend ok she will come on when she needs to nice to know she reading this im sure that helps as i was reading this for a good while before i posted had so many questions wasnt sure what i wanted to know. Also head does be all over the place so writing post a lot wrk.
Pumba thanks for help with HD just want to know as he has bigger problem with upper bowel and want to be prepared as when they told me testing for CF was totally unprepared and it floored me
Rachelhd thanks yet again for your lovely support
hope all is well xxxx

sammy, apologies not had chance to read up on your lo BUT im guessing they have had a stoma reversal...

If you need advice on bum creams I suggest cavilon. We were advised it in hospital as its a burns cream and ideal for severe nappy rash etc.

We still use it now on ds 3/4 years on. He is prone to getting a red bum from pooing (his is very loose stools and acidic hence red bum)

We get it on prescription and in the uk its available in wipes (like a little square of foam) spray (we use this as easier to apply) and on a cotton bud type thing...

Fab stuff.. It makes a barrier on the bum, like a sheen and its really good. hth x

hi shhhh Lucas will have his stoma for a good while 6mth plus i was advised to put poo on bum now to get his bum used to poo so i dont have problems when they reverse.
its good that cavalon works for your son how long did he have stoma for.

Does anyone know why its so hard to get onto ESP have signed up loads time and still waiting for admin to accept me

ESP..?