# is this wrong?



## xxHollaxx88

My LO has short bowel syndrome, he has a colostomy bad and also other things. When his bag leaks and I change it it can be quite stressfull for him and while the bag is off and I'm cleaning it and getting the area ready for the new bag sometimes poo comes out of his stoma and I can't change the bag and If he's just eaten its even worse and takes me ages, its worse when he's cying too he doesn't like tho whole process. Anyways I'm there trying to do his bag and I'm getting so angry and frustrated and I'm looking at him and getting so angry espesh if the bag leaks straight away after I've done it and I've gotta do the whole thing again, but I feel so bad because I know its not his fault and he's been through a lot and hasn't left hospital since sept 09 when he was born and I feel like I'm the worst person ever getting angry. I don't get angry and take it out on him I just get angry and frustrated with what I'm doing.
Is it so wrong that I'm getting so frustrated and is there anybody else that sometimes gets frustrated with their child?x


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## Adanma

Oh hunny welcome to the wonderful world of parenting! Of course you get frustrated and angry! That doesn't mean you don't love him. It doesn't make you a bad mum. It makes you human. Try not to guilt yourself and remember all of the caring, loving, wonderful things you do for him everyday. 

I get very frustrated with both of my boys (5 and 3). One is autistic and one isn't. They both have their moments! I am a human being and at times I get angry. Hope this helps you not feel so alone and guilty.

Adanma


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## mummy3

:hugs:
This is completely normal. We all have moments where we feel frustrated and overwhelmed, add to that your situation which is naturally more stressful:hugs:

Yep its parenthood:flower:


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## xxHollaxx88

aww thanks guys :) x


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## ZubZub

I hear you! I was wondering if I was the only mom on this site who regularly feels like throwing a tantrum! Everyone seems to be coping so well with the most unbelievable stress and I really don't know how they do it. Especially the girls who have posted about being pregnant and knowing their children will have problems. How are they so brave and upbeat? Amazing!

When my DD was born, she spent 3 weeks in ICU with a severe lung infection (she inhaled merconium) and 2 weeks in she was diagnosed with downs. I remember wanting to run away and just leave her there, thinking it would be better if she died and wondering if I would ever wake up happy again. I felt guilty at giving my son a disabled sibling (here the state doesn't provide much support, if any, so eventually her needs will be on his shoulders). It was such a dark period for us. And then people kept saying "oh, but they are such loving children". I thought - I have a labrador, I want a normal child. They said "God only blesses special people with special children". I thought - Well, I'd rather be a shit and have a normal child. Feeding was a nightmare and she just wouldn't gain weight. Then we found out that she needed immediate open heart surgery. DH & I argued all the time. He kept saying we were so stupid to have had another child. He nearly flipped when we were told to "have another child, it makes you feel like a normal family". 

Of course, we now know the person that exists beyond the diagnosis and love our little munchkin and are so proud of what a little fighter she is. She has such attitude - it's as if she goes through life with two middle fingers up at the world. And after what she's been through, we guess she has the right to a bit of attitude. Now we're waking up happy - but every so often I still wish for the easy days when we were three and not four. 

Here's to everyone on this site who dedicates their time, their energy and their hearts to little people who may never know to say thank you, but will give something back that folks of "normal" kids will never have. :hugs:


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## Lottie86

I get all stressed and frustrated at times too especially if he is having one of his hypersensitive days where textures, light and noise can all have him screaming in pain and there is nothing I can really do to help him or when I have just changed his sheets due to an exploding nappy (he cannot go without large doses of 2 laxatives whic hcan make him explosive) and then his nappy explodes again shortly afterwards or when I am exhausted and his pump alarms all night long as he keeps kinking the tube in his sleep as he holds it as a comforter. I am soooo glad I'm not the only one who can get a bit stressed at times with the situations we are in.


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## xxHollaxx88

Lottie can i ask what is the matter with your LO? sorry for being rude xx


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## Lottie86

He's got a very rare chromosome abnormality and has a variety of problems due to this. They can't cure the abnormality so they just have to treat issues as they arise.

He had horrendous GORD and he couldn't even keep 20ml an hour dripped into him down and was vomiting constantly day and night and screaming all the time as he was in so much pain, losing a lot of weight and a very very poorly boy and required surgeries, his stomach doesn't empty properly without meds, his bowels don't move stuff through without large doses of 2 different laxatives twice a day (sometimes they make him explosive and other times even they don't work and he needs suppositories as well), he has epilepsy which still isn't controlled, severely delayed development, sensory issues and has been tube fed for all but about 6-7 weeks of his life and will be for some considerable time yet (his gastro consultant mentioned timescale in years). 

By the time he was 12 months old he'd had about 11 general anaesthetics bless him. We finally got to be full time at home parents when he was 8 months old so not as long as you have been in hospital but I do understand where you're coming from. :hugs::hugs:


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## xxHollaxx88

Lottie86 said:


> He's got a very rare chromosome abnormality and has a variety of problems due to this. They can't cure the abnormality so they just have to treat issues as they arise.
> 
> He had horrendous GORD and he couldn't even keep 20ml an hour dripped into him down and was vomiting constantly day and night and screaming all the time as he was in so much pain, losing a lot of weight and a very very poorly boy and required surgeries, his stomach doesn't empty properly without meds, his bowels don't move stuff through without large doses of 2 different laxatives twice a day (sometimes they make him explosive and other times even they don't work and he needs suppositories as well), he has epilepsy which still isn't controlled, severely delayed development, sensory issues and has been tube fed for all but about 6-7 weeks of his life and will be for some considerable time yet (his gastro consultant mentioned timescale in years).
> 
> By the time he was 12 months old he'd had about 11 general anaesthetics bless him. We finally got to be full time at home parents when he was 8 months old so not as long as you have been in hospital but I do understand where you're coming from. :hugs::hugs:


Aww bless,sounds like been through a lot. hes obv a lil fighter tho! when you say tube do you mean an NG tube (through his nose) my son has one of those, he will have that for a while too, has had his less than 24 hours birth x


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## Lottie86

Hmmm in fact thinking about it he's been tube free for even less time than I thought as I'd forgotten about his feeding tube when he was born so I think he's actually only had about 4 weeks tube free! 

He had an NG tube to start with then he had an NJ tube fitted that went into his bowel (as he couldn't keep anything in his stomach so everything had to go directly into his bowel) and then in mid November when he had his surgeries done he had a PEG tube fitted which was changed to a Mic-Key button in April.


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## ZubZub

You girls are so amazing. I truly don't know how you do it. My heart aches for your little ones and how hard their short existences have been. It just doesn't seem fair. I pray you get the strength to keep on facing each day, and that you get the miracle of healing you and your babies deserve. And incase the people around you forget to say it: Well done.


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## xxHollaxx88

Thank you so much,means alot x


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## xxHollaxx88

Lottie86 said:


> Hmmm in fact thinking about it he's been tube free for even less time than I thought as I'd forgotten about his feeding tube when he was born so I think he's actually only had about 4 weeks tube free!
> 
> He had an NG tube to start with then he had an NJ tube fitted that went into his bowel (as he couldn't keep anything in his stomach so everything had to go directly into his bowel) and then in mid November when he had his surgeries done he had a PEG tube fitted which was changed to a Mic-Key button in April.

Aww bless your gorgeous boy! My LO had a Mic-key button into his stoma so we could poen and close it x


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## jojo2605

Hun this is totally understandable. Whilst your son has been through so much, you're there going through it all with him, it's inevitable that you will have times of anger and frustration. 

I know how annoying a colostomy bag can be at times, changing Sam's can be a nightmare, especially the older and more wriggly he gets!!!! It really can be a huge ordeal and I've had poo everywhere!! One day it was such a mess that I just picked him up, stripped us both off and got us both in the shower! 

Huge hugs to you hun, it's not easy having to deal with a baby with problems, please don't be so hard on yourself, you seem like a wonderful mommy and I'm sure your LO knows that :hugs:


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## xxHollaxx88

jojo2605 said:


> Hun this is totally understandable. Whilst your son has been through so much, you're there going through it all with him, it's inevitable that you will have times of anger and frustration.
> 
> I know how annoying a colostomy bag can be at times, changing Sam's can be a nightmare, especially the older and more wriggly he gets!!!! It really can be a huge ordeal and I've had poo everywhere!! One day it was such a mess that I just picked him up, stripped us both off and got us both in the shower!
> 
> Huge hugs to you hun, it's not easy having to deal with a baby with problems, please don't be so hard on yourself, you seem like a wonderful mommy and I'm sure your LO knows that :hugs:

heya i dont mean to sound rude but whats wrong with your LO for him to have a bag?x


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## jojo2605

xxHollaxx88 said:


> jojo2605 said:
> 
> 
> Hun this is totally understandable. Whilst your son has been through so much, you're there going through it all with him, it's inevitable that you will have times of anger and frustration.
> 
> I know how annoying a colostomy bag can be at times, changing Sam's can be a nightmare, especially the older and more wriggly he gets!!!! It really can be a huge ordeal and I've had poo everywhere!! One day it was such a mess that I just picked him up, stripped us both off and got us both in the shower!
> 
> Huge hugs to you hun, it's not easy having to deal with a baby with problems, please don't be so hard on yourself, you seem like a wonderful mommy and I'm sure your LO knows that :hugs:
> 
> heya i dont mean to sound rude but whats wrong with your LO for him to have a bag?xClick to expand...

Not rude at all hun! 

Sam was born with a condition called Imperforate Anus, this means that his bowel failed to form properly and connect to an opening (an anus) and instead ended blindly inside his body and attached to his urinary tract. This meant that obviously as poo traveled down the bowel it would just stay in there and had no where to go so at one day old he had a stoma formed. He had an op Dec 09 to form an anal opening and to detach the bowel from the urinary tract and attach it to the opening. 

He has had another cosmetic op in June to make his bottom look more normal (although it will never look like a 'normal' one) and the stoma is due to be reversed Oct/Nov. Then it's just a waiting game for us to see how much bowel control he has and whether he'll actually know he's going. One things for sure, he'll always have continence issues, we just don't know to which level at the moment. 

Hope that explained it ok!! :thumbup:


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## xxHollaxx88

aww bless him sounds like hes been through alot. My LO is having a stoma reversal beginning of sept :). Hope all goes well for u. x


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## MrsRabbit

Having children period can be stressful let alone adding special needs on top of it.

It's hard! I get angry and frustrated too. It happens.


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## angelstardust

I think we all get frustrated at times. We just can't be superwoman all the time! 

DS2 is only recently out of nappies. April for daytimes nappies, just after he turned 5. I knew it wasn't his fault, but he would poo and not tell us. So a few hours of him sitting in it would not only spread it about, but it would dry and stick like flamin cement. I got so mad trying to clean this stuff off, especially if we were out and i couldn't just shower him. He'd get horrific nappy rash because of it which only made it worse. He would scream and flail about and all I could think was 'well if you told me when you did it, it wouldn't bloody hurt so much!'. 

Then we got him out of day time nappies but he would only poo in a nappy (actually pull ups, but I just call them nappies). Id ask him before he went to bed if he wanted to poo in the toilet but no... First thing in the morning he'd take off his nappy, sodden with urine and poo from the night before then he'd try and clean himself and generally it would end up everywhere. The bed, the sofa, the bathroom....

It gets easier though. They do grow up and things do get easier. Whether they 'get better' or we just get better at coping... it gets easier. Probably we just accept that we are not perfect but we are as good as we can be and we stop beating ourselves up so much.


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## stephwiggy

i just wanted to send you mummies lots oflove .. i use caths but dont have double continance issues (atm) - but i am to some extent aware of hard it can be. I would just say from time to time - if you can - sit back and look at how much you have achieved !!! you may be quite suprised xx


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## jojo2605

xxHollaxx88 said:


> aww bless him sounds like hes been through alot. My LO is having a stoma reversal beginning of sept :). Hope all goes well for u. x

He has been through a lot bless him, 6 operations so far, at the moment the bowel issue has taken quite a back seat, with him having his amputation 3 weeks ago but we'll be facing that head on in a couple of months! But you know what hun, we have been lucky as Sam has been able to come home after every operation and he is otherwise a very healthy little boy so I admire you so much for coping with your LO being in hospital so much. They do absolute wonders for our children but I'm not going to lie, I find them very draining and I'm only there a few days at a time, I can only imagine what it's been like for you having your LO in there for so long :hugs:

I'm so pleased that your son is getting his stoma reversed, you must feel a sense of relief!! Does this mean that they have been able to lengthen the bowel enough? What sort of issues, if any do they invisage him having once the operation is performed?


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## jojo2605

angelstardust said:


> I think we all get frustrated at times. We just can't be superwoman all the time!
> 
> DS2 is only recently out of nappies. April for daytimes nappies, just after he turned 5. I knew it wasn't his fault, but he would poo and not tell us. So a few hours of him sitting in it would not only spread it about, but it would dry and stick like flamin cement. I got so mad trying to clean this stuff off, especially if we were out and i couldn't just shower him. He'd get horrific nappy rash because of it which only made it worse. He would scream and flail about and all I could think was 'well if you told me when you did it, it wouldn't bloody hurt so much!'.
> 
> Then we got him out of day time nappies but he would only poo in a nappy (actually pull ups, but I just call them nappies). Id ask him before he went to bed if he wanted to poo in the toilet but no... First thing in the morning he'd take off his nappy, sodden with urine and poo from the night before then he'd try and clean himself and generally it would end up everywhere. The bed, the sofa, the bathroom....
> 
> It gets easier though. They do grow up and things do get easier. Whether they 'get better' or we just get better at coping... it gets easier. Probably we just accept that we are not perfect but we are as good as we can be and we stop beating ourselves up so much.

Hey angelstardust. i don't have any children diagnosed with autism but my 3 younger siblings were diagnosed at a young age and 2 of them had real issues with becoming clean in the poo department. Both were 6-7 before my mother and stepfather conquered it. It was like they just had a mental block when it came to pooing, they just couldn't fathom needing to do it in the toilet, It was hard having to change a 'grown up' poo and it was sometimes hard to understand how they could be comfortable being ok with it lying next to them when they looked so old. But they got there in the end :thumbup:

They are 16, 17 & 18 now and all doing fantastically well!!! 18 year old is off to uni in September, 17 year old is at college and 16 year old is acing his GCSE's already with a year to go.... It is totally amazing what can be achieved with the right sort of input. I'm sure you don't need me to tell you this hun as I'm sure you already know but I just thought it woudl be nice to hear positive stories as I find there's such a stigma surrounding autism at times


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## angelstardust

jojo2605 said:


> angelstardust said:
> 
> 
> I think we all get frustrated at times. We just can't be superwoman all the time!
> 
> DS2 is only recently out of nappies. April for daytimes nappies, just after he turned 5. I knew it wasn't his fault, but he would poo and not tell us. So a few hours of him sitting in it would not only spread it about, but it would dry and stick like flamin cement. I got so mad trying to clean this stuff off, especially if we were out and i couldn't just shower him. He'd get horrific nappy rash because of it which only made it worse. He would scream and flail about and all I could think was 'well if you told me when you did it, it wouldn't bloody hurt so much!'.
> 
> Then we got him out of day time nappies but he would only poo in a nappy (actually pull ups, but I just call them nappies). Id ask him before he went to bed if he wanted to poo in the toilet but no... First thing in the morning he'd take off his nappy, sodden with urine and poo from the night before then he'd try and clean himself and generally it would end up everywhere. The bed, the sofa, the bathroom....
> 
> It gets easier though. They do grow up and things do get easier. Whether they 'get better' or we just get better at coping... it gets easier. Probably we just accept that we are not perfect but we are as good as we can be and we stop beating ourselves up so much.
> 
> Hey angelstardust. i don't have any children diagnosed with autism but my 3 younger siblings were diagnosed at a young age and 2 of them had real issues with becoming clean in the poo department. Both were 6-7 before my mother and stepfather conquered it. It was like they just had a mental block when it came to pooing, they just couldn't fathom needing to do it in the toilet, It was hard having to change a 'grown up' poo and it was sometimes hard to understand how they could be comfortable being ok with it lying next to them when they looked so old. But they got there in the end :thumbup:
> 
> They are 16, 17 & 18 now and all doing fantastically well!!! 18 year old is off to uni in September, 17 year old is at college and 16 year old is acing his GCSE's already with a year to go.... It is totally amazing what can be achieved with the right sort of input. I'm sure you don't need me to tell you this hun as I'm sure you already know but I just thought it woudl be nice to hear positive stories as I find there's such a stigma surrounding autism at timesClick to expand...

He is finally out of nappies by night too. Not properly because he wets the bed about 3 times a week, but he goes to the loo for a poo. I chose a wet bed rather than a nappy. Rubber sheets! 

He doesn' have Autism but does have Autistic tendancies which goes along with the Hemiplegia. Basically, a lot of kids with Right sided Hemi (CP down one side, in his case his right) have mild-moderate Autism-like traits, the emotional and behavioural traits, not so much the social problems. 

So I can identify with Autism even though officially he isn't Autistic. 

So much focus on labels eh? Whether to stamp them or avoid them.


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## xxHollaxx88

jojo2605 said:


> xxHollaxx88 said:
> 
> 
> aww bless him sounds like hes been through alot. My LO is having a stoma reversal beginning of sept :). Hope all goes well for u. x
> 
> He has been through a lot bless him, 6 operations so far, at the moment the bowel issue has taken quite a back seat, with him having his amputation 3 weeks ago but we'll be facing that head on in a couple of months! But you know what hun, we have been lucky as Sam has been able to come home after every operation and he is otherwise a very healthy little boy so I admire you so much for coping with your LO being in hospital so much. They do absolute wonders for our children but I'm not going to lie, I find them very draining and I'm only there a few days at a time, I can only imagine what it's been like for you having your LO in there for so long :hugs:
> 
> I'm so pleased that your son is getting his stoma reversed, you must feel a sense of relief!! Does this mean that they have been able to lengthen the bowel enough? What sort of issues, if any do they invisage him having once the operation is performed?Click to expand...

Heya, well he has had a lenghtening op and it went well, gave him about 60cms after rather than about 25/30cms. He will still need to be fed through his tube in his chest till he can absorb enough for what he needs to live, because he eats normally but doesnt absorb it all x


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## Emmea12uk

I feel the same so often when I am cleaning up my son for the fourth time in the hour, and the moment I put his nappy on he does it again. I feel so angry, guilty, sad and emotional that I just want to scream. I feel like I can't keep doing this and I tell myself I am a bad mother to be thinking about myself. I feel so bad for feeling that way. Sometimes it all gets too much and I just want to cry but I can't let him know I feel that way, because I don't want him to see it and blame himself. Grrrrrrrrrrrr


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## Groovychick

:hugs:


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