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Children's health

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Original poster

baby in a lot of pain

15 replies

quietboys · 31/01/2011 21:01

and I cannot fucking bear it.

I know this isn't about me, I don't feel bad for me I just need to say it out loud.

I try not to do this in front of DH or anyone else because it's hard on everyone. But the fact is that it makes me sick to my stomach.

He's had a couple of operations on his bowel. Last week, a series of unfortunate coincidences and a post op complication meant he was in the most awful pain for about 48hrs. And as a result is still suffering spasms of pain several times a day. He has a stoma and his daily care was already v upsetting for him. Now he has stitches on his bum which I have to wash with salty water twice a day and these spasms of pain to contend with too.

He's very brave and so cheerful most of the time. It's just shitty that he has to go through this.

Sorry for the rant...not good at grace under pressure.

OP posts:

Are your children’s vaccines up to date?

Set a reminder

Iatemyskinnyperson · 31/01/2011 21:08

So sorry to hear this about your DS, I hope he makes a good recovery and feels better soon.

Did his medical team expect these spasms? Might they be able to change his meds?

I know you're not looking for solutions, watching your children go through pain and illness is heart-breaking in the real sense of the word. Rant away, that cheerful denial we have to go through during these times can turn the stomach. I'm sending v un-mumsnettish good wishes and strength up to the ether to rain down on you

PUMBA · 31/01/2011 21:09

I just wanted to say I know how you feel !!! I have just had to change my daughters Stoma bag and her skin is Sore we both cried !!! Can't offer any good advice except hang in there !!

Umnitsa · 31/01/2011 21:16

Just a quick note to wish all the best to your little boy and you. Helpless watching of a suffering baby is one of the most excruciating experiences. And keeping a confident facade and remaining sane for the sake of the family can be also terribly exhausting... Hope he heals well, and wishing you lots of strength.

Original poster

quietboys · 31/01/2011 21:29

Gosh, what kind words. I was expecting a bit of a flaming tbh. Thank you.

Insult to injury the sore skin, isn't it PUMBA?

OP posts:

PUMBA · 31/01/2011 21:34

No one is going to flame you !!!! My little girl is much older but it is still awful to see them in pain !!! She says the worst part is the stinging/burning she actually rolls around the floor sometimes :-(

Pancakeflipper · 31/01/2011 21:36

I am wincing at the thought of this experience. The poor mite. And it's bloody horrid to watch your kid be in pain and ill health.

Rant away on here if it helps you smile and soothe your boy. It's emotionally draining being strong for them.

And I hope everything improves for him ( and that automatically makes it better for you).

Original poster

quietboys · 31/01/2011 21:37

How old is she PUMBA? DS is only 15wo so he can't tell me but I know the barrier wipes sting because he screams :(

OP posts:

nipplesofthenorth · 31/01/2011 21:40

Can your baby have anything to help the spasms? My son has a urinary stoma (mitrofanoff) and can get huge bladder spasms and he has meds to ease this. Re the sore skin have you tried something like Peri Prep wipes? They protect the skin and aid adhesion. DS had very sore skin and these have really helped.

Don't apologise for getting upset and frustrated. It's a shitty situation and it helps to let it out sometimes.

Original poster

quietboys · 31/01/2011 21:50

I was told the bladder spasms were caused by his catheter. The catheter was removed on friday evening but I might ring the ward tomorrow because he's still suffering. He's on ABs too.

We use pelican wipes/ cavilon etc. for his skin but because it's an ileostomy the poo is v liquid and caustic (sorry TMI)

I have just had a gigantic glass of wine, DS has had painkillers and is sleeping and your loveliness is making me feel a whole lot better.

OP posts:

PUMBA · 31/01/2011 22:43

My little girl is eight now so at least understands that although something hurts it sometimes has to be done!!!! It is never easy to see them in pain but it was worse when she was younger as she used to look so scared and just couldn't understand why we kept doing things that bhurt her...

We use cavilon and barrier wipes but her skin still breaks down , and her bag still leaks we are already on duvet number two this evening as she sprang a leak earlier.... Xxxx

Original poster

quietboys · 31/01/2011 22:59

That's part of what I hate, that it's me causing him pain. But it has to be done.

Cavilon seems to be the best barrier so far. None are perfect though. Stomahesive is really good but stings badly when it goes on.

Has she had the stoma since she was a baby?

OP posts:

PUMBA · 01/02/2011 08:18

She has had her Stoma for a couple of years but has had an ACE Stoma before that ...she still has her ace so has two stoma's at the moment..... It's really hard to do something to your own child that you know will hurt them . It goes against everything you stand for as a parent!!!! We have learnt over the years that although we are capable of doing some things we don't as it is better to take a step back and let the professionals do it.... After her last surgery she needed daily dressings which were straight forward but very painfull so we decided it was better for us to let the community nurses do them she found it much easier that way as she says she doesn't like getting cross with us and then once it was over she wasn't mad at us for hurting her !!! I'm not sure if that makes sence it's been a long night !

Original poster

quietboys · 01/02/2011 09:53

Makes total sense :)

What is an ACE stoma?

OP posts:

PUMBA · 01/02/2011 10:56

Antegrade colonic enema Stoma it's were they have a small Stoma that you can put a tube into so that fluid can be put straight into the large bowel to wash it out!!!

EditedforClarity · 01/02/2011 17:56

Quietboys - sorry that your little boy is in pain. I'm not sure if you are aware but there is a thread on MN wihere there are other mums whose children have stomas. It's hereStoma thread. Hope they can offer you some support.

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