View Full Version : Bowel Mum chats
gizmoduckus
22-09-2010, 12:03
Hi there
After chatting with another mum on here, I thought that this might be something that is needed on here. A place where we can discuss things like chronic constipation and anything else bowel related.
My DS2 has something called Hirschsprungs Disease. He was born without some of his nerve-endings in his bowel which meant he didn't know when he needed to poo. He was diagnosed late at 10 months and needed a colostomy bag for 4 months. After having a surgery which removed the affected bowel he has been doing well but still not without some minor issues.
I hope that this thread can take off so that we can ask others about what they did in similar situations. It always helps when others can throw ideas around. :highfive:
hey
I guess my little monkey fits in here to, She has discraceful bowels that decide to stop entirly when ever they feel the need meaning we cant get any feeds into. She is fed into her small bowel and drains her tummy. and has needed IV nutition many times in her life. They are saying about preogresive bowel failure but im not ready to except that yet so we will just keep going as we are as long as we can. Bowel issues suck.
gizmoduckus
22-09-2010, 12:14
Welcome M2M, I hope that your little monkey proves them all wrong about progressive bowel failure and I agree, bowel issues suck!
Cheers Giz!
My DD1 has Spina Bifida and as a result has chronic constipation and incontinence. Unsure if it's because of the SB or the spinal cord surgery she had at 10 months. She is always SOFT just can't pass her waste. She over wets a lot and is also having trouble knowing when wees are coming (she's 4).
The Spina Bifida clinical nurse aka bum nurse said that we are most likely looking at an internal poo bag thingy with a timer (forget what you called it Giz!) rather than a poo bag, but they wont look into her bowel problem until she is 5. We've been trying to get a referral to a GI for 2 years but SB Dr refuses to come to the party and we can't afford to find one privately...
So for now we continue with a high fibre diet and regular manual evacuations, now against her wishes and she refuses to admit to sore bum or sore tummy as she knows what it leads to...
We are thinking her bowel issues are SB related not surgery related as she has been chronically constipated since she was 2 weeks old and went off breast milk...
Sadly gastro is something we sometimes long for, just to clear her out without our intervention...
Well, we're going in for another manual evacuation tonight... *sigh* I wish we had the $$ to see a GI privately, poor kid shouldn't have to suffer until she's in school before they'll even look at her... We hate this... I look at it as a form of torture, and I'm one of the bad guys holding her down to be tortured! :crying:
Well, we're going in for another manual evacuation tonight... *sigh* I wish we had the $$ to see a GI privately, poor kid shouldn't have to suffer until she's in school before they'll even look at her... We hate this... I look at it as a form of torture, and I'm one of the bad guys holding her down to be tortured! :crying:
Poor thing, How does she have her clean outs done is it done with enemas, or in theatre or with a NG tube down and the meds done that way? We are releively lucky with DD cause she ahs her tummy an bowel tube we can clean her out with out any form or torture ( well apart from when they need to do it PR
We do it. She gets an enima and I hold her while daddy lubes his glove and gets it out...
It's not fun for anyone, and DD2 just wants to cuddle her to make her feel better.
SB clinic won't look into her bowel issues until she's in school...
She has asked for me to do it, but I suck and have too small fingers, can't get the twist...
TripleTime
11-10-2010, 19:53
DD1 fit's in this one too. No freaking idea why, we're on medication number 3 & still not having much luck. Back to the Pead in Dec to try something else, if that doesnt work, its looking like exploitative surgery.
I want something that works 1st go every time without either me or DH having to intervene.
TripleTime
11-10-2010, 19:55
She has asked for me to do it, but I suck and have too small fingers, can't get the twist...
I have the same problem, only way i can do anything for DD1 is 3ml of glycerin rectally with a infacole syringe.
What is medication number 3??
The suppositories don't work anymore, haven't for years... Hmmm... MIL pinched some stronger kiddie suppositories from work for us... Wonder where I put them??? Need to get another suitable bottle tomorrow, lost the one we used to use for her movicol (yep, at adult strength).
She's calmed down for now, but I didn't sleep last night and none of us need her sobbing and kicking around through the night or at daycare tomorrow...
Hoping DD2 will fall asleep soon so we can get it over and done with...
poor litle thing, When DD needs enemas she just has a cathater put in her but and and we adminiter the meds and saline flush through there and it cleans her out.
I think by medication number three Krystal means the 3rd med they have tried, I could be wrong but
TripleTime
11-10-2010, 20:16
Medication number 3, will be the 3rd we've tried since june.
Suppositories dont work here either, reason why we use straight glycerin & loads of it.
threeofthem
11-10-2010, 20:19
I could possibly fit in here aswell although our issues are not in comparison. Dd has irritable bowel she is always getting diahrea for no reasons at all she is 4 and can still not get to the loo in time. No-one can give me an answer for it and as she is fairly healthy dr's don't want to know about it. It's very fustrating for both of us.
poor thing that must be frustrating, DD goes from one extream to the other one minute she cant poo at all the next its all she does, She has inflamatry bowel disease ( lymphonodular hyperplasia is the spacific type) and motility disorder, so with her its not a case of the poo is to hard to pass its her bowels are to useless to push it along and then it all comes in one go
7rugrats
11-10-2010, 20:31
I may fit in here.
My little man DS4 (25 weeker) got NEC (necrotizing enterocolitis) when a week old and perforated his bowel so had a colostomy bag for several weeks.
He is now 9mths old and has failure to thrive, he is only 4.7kg.
He is a severe vomiter but they are thinking that he is not absorbing nutrients calories due to his past bowel problems.
He is on extra calorie milk and three solid feeds and still not gaining.
He gets very constipated and his poos are big hard lumps that often make his bottom bleed.
Sounds like many of you and your LO's go through a harder time then us...I really feel for you.
TripleTime
11-10-2010, 20:45
L- T's bowel issues are nothing compared to M's.
Any kind of bowel issue is welcome in here!! Hi!!!
7rugrats, the bleeding bottom is something we have only experienced once and that was GP error, hence we do the evacuations ourselves now... Stupid idiot Dr used a dry glove on her and made her hemmorage!!! Never again! It's either us or the clinical spina bifida bum nurse now...
Reminds me I have to try and get some more super large nappies from her, the extra large from s/market just don't fit anymore...
Threeofthem, I imagine that would be rather frustrating... I get worn out from DD2 just taking a pooey nappy off and some going out of the nappy... I guess cleaning is supposed to be part of the "mum" job isn't it... I'm not so good with that aspect, I gag at attempting to clean the toilet - it's a mans job in my house!! I'm lucky their daddy is good with things like that...
Being pregnant I'm gagging from "normal" business from anyone...
M2M DD1 can't move it through either, but it just doesn't come... It's been a good month since the last bit of intervention but sometimes it's weekly...
The last one we did... There was nothing in her colon!! It has since moved down thankfully and I can see that she's full, and nothing but skids indicates she needs help too.
Tripletime, what are the things you've tried so far??
TripleTime
11-10-2010, 21:00
Tripletime, what are the things you've tried so far??
Movacol-half, MAJOR fail! Worked for a few weeks than nothing. Couldnt get it into her no way shape or form.
She's now on Lactolose (spl), first few days were great, now she's blocking up & dry.
This is after trying colocyal (spl), foods, water, juice & anything else we can get our hands on.
I do have her drinking 300ml of blackcurrant juice & 300ml of water with orange juice now with one 200ml bottle which is a huge improvement on where she was 3 months ago.
I may fit in here.
My little man DS4 (25 weeker) got NEC (necrotizing enterocolitis) when a week old and perforated his bowel so had a colostomy bag for several weeks.
He is now 9mths old and has failure to thrive, he is only 4.7kg.
He is a severe vomiter but they are thinking that he is not absorbing nutrients calories due to his past bowel problems.
He is on extra calorie milk and three solid feeds and still not gaining.
He gets very constipated and his poos are big hard lumps that often make his bottom bleed.
Sounds like many of you and your LO's go through a harder time then us...I really feel for you.
Oh poor little thing to get NEC at 26 weeks, Im glad to ehre he got rid of his bag, My DD has always been a really tiny one also, she is now a great size thanks to 16 weeks of IV food this year, it seems to be a yearly thing for her that she needs a masize top up of IV nutrients. We have tried every thing to make her grow but she cant tolerate most things, Finaly aftr 4 years we have her on a feed she can tolerate ( well as wel as she can tolerate anything else) and that vivonex she reascts to everything including neocate and elecare.
What feed is he on to help with absorption ?
Widget, is your little one not on medication all the time to keep it moving ?
Movacol-half, MAJOR fail! Worked for a few weeks than nothing. Couldnt get it into her no way shape or form.
She's now on Lactolose (spl), first few days were great, now she's blocking up & dry.
This is after trying colocyal (spl), foods, water, juice & anything else we can get our hands on.
I do have her drinking 300ml of blackcurrant juice & 300ml of water with orange juice now with one 200ml bottle which is a huge improvement on where she was 3 months ago.
Ducolax drops may be your next one to try, They dont usualy use it on kids but Miks surgen put Mik on it as her bowel had shut down, its the only one that gets things going on mik when her colon goes on strike.
TripleTime
11-10-2010, 21:21
Ducolax drops may be your next one to try, They dont usualy use it on kids but Miks surgen put Mik on it as her bowel had shut down, its the only one that gets things going on mik when her colon goes on strike.
Ducolax was mentioned when we were there a few weeks ago. Its our next option.
We're running out of options & FAST!
We found the only way to get movicol into DD1 is with Ribena... She won't have it any other way... Personally I don't blame them, it smells like playdo, hate to know what it tastes like!!
We started on coloxyl at 2 weeks old when she changed to formula. SB Dr ended up getting us to triple the recommended dosage to get an effect from it...
Then to suppositories... Glycerol doesn't do anything for her...
From there they wanted us to give her enimas daily. Which didn't work. We only use enimas now to lubricate her colon before a manual evacuation...
We went to emergency with her once and she ended up having 1/2 a old geezer enima and it still didn't do anything!! FH said her trying to poo afterwards sounded like I did when pushing DD2 out...
From enimas to movicol half at 10 months... Worked a few times, that was it...
She's now recommended to have full movicol daily, even up to 4 times a day if needed, but it doesn't do anything so we don't anymore...
Bananas have a hideous effect on her, but she LOVES them! They are a very special treat, usually reserved for after manuals...
We cut back on her dairy a bit, no yoghurt for arvo tea at daycare 3 days a week anymore, which she lives yoghurt too... It's a special treat for when they've both been really good - doesn't happen often lol
We tried the diet thing too... High fibre isn't working either...
So far a Ribena popper a day keeps her nice and soft and on the occasion we can get McAvites digestive biscuits into her we usually get a good poo... Kiwi fruit has been good to us in the past as well, but she'll only eat them if she's sharing with daddy...
We're at a loss as to what to do next...
We want a GI to stick a camera up there and see what's wrong!! A short term pain to get rid of a long term problem with pain is something we'll happily do... But as I said, no-one seems to want us to see one...
SB Dr said a GI will just tell us to see her about her bowels... Her neurosurgeon said GIs aren't child friendly and he won't refer us, SB Dr has to...
Ducolax was mentioned when we were there a few weeks ago. Its our next option.
We're running out of options & FAST!
you may be running out of conventional options but the games not over trust me, you have alot of room to move with meds ;)
The medication they recommend is all over the counter stuff and doesn't work for her - like her body got used to it and is immune now - so no, she's not on medication, has never been prescribed anything either :(
We found the only way to get movicol into DD1 is with Ribena... She won't have it any other way... Personally I don't blame them, it smells like playdo, hate to know what it tastes like!!
We started on coloxyl at 2 weeks old when she changed to formula. SB Dr ended up getting us to triple the recommended dosage to get an effect from it...
Then to suppositories... Glycerol doesn't do anything for her...
From there they wanted us to give her enimas daily. Which didn't work. We only use enimas now to lubricate her colon before a manual evacuation...
We went to emergency with her once and she ended up having 1/2 a old geezer enima and it still didn't do anything!! FH said her trying to poo afterwards sounded like I did when pushing DD2 out...
From enimas to movicol half at 10 months... Worked a few times, that was it...
She's now recommended to have full movicol daily, even up to 4 times a day if needed, but it doesn't do anything so we don't anymore...
Bananas have a hideous effect on her, but she LOVES them! They are a very special treat, usually reserved for after manuals...
We cut back on her dairy a bit, no yoghurt for arvo tea at daycare 3 days a week anymore, which she lives yoghurt too... It's a special treat for when they've both been really good - doesn't happen often lol
We tried the diet thing too... High fibre isn't working either...
So far a Ribena popper a day keeps her nice and soft and on the occasion we can get McAvites digestive biscuits into her we usually get a good poo... Kiwi fruit has been good to us in the past as well, but she'll only eat them if she's sharing with daddy...
We're at a loss as to what to do next...
We want a GI to stick a camera up there and see what's wrong!! A short term pain to get rid of a long term problem with pain is something we'll happily do... But as I said, no-one seems to want us to see one...
SB Dr said a GI will just tell us to see her about her bowels... Her neurosurgeon said GIs aren't child friendly and he won't refer us, SB Dr has to...
Have they tried her on glycoprep yet ( what they use pre colonoscopy), that can be a good clean out one not sure how it would go getting int into a child that doesnt have a tube, but I know its one that can work in alot of kids.
sorry my last repply I was typeing before you last one, I have no idea about over the counter stuff or what is over the counter and whats not we just use what the drs script her for
TripleTime
11-10-2010, 21:38
you may be running out of conventional options but the games not over trust me, you have alot of room to move with meds ;)
Sure hope so!! Its doing my head in.
Just get J's reflux sorted & T starts
Yeah, 4 years and not 1 script :mad:
What's the first step script wise?? I'll demand GP give me one!!
It depends on teh part of the bowel that is buggered really, I know DD is on domperadone all the time for motility, she was also on ducolax for a long time contiualy as well, glycerprep, microlax ememas have used alot of as well.
Its more the dosing that is differnt if it done through the Peads or surgens. I think the hardest part with you guys would be getting alot of the meds and fluids into them, at times mik was having 6 sachets of movacol over 24 hours that was possible because we can just mix it with ehr feeds and run it through her pump. They do alot of clean outs over here via a nasogastric tube. That wopuld be something for you guys to talk to yur peads about
How do we Know which part if no one will investigate???
We rely on Paeds that specifically concern her, like the neurosurgeon and Spina Bifida Dr as they are through Medicare, we can't afford a private Paed...
We have an ample supply of microlax lol it's over the counter, pick em up from any chemist without a script... Same with the movicol...
Oh, we also tried physillium husk or what ever it is... It's a fine grainy sugar like packet like straight fibre I think... That did nothing for her...
How do we which part if no one will investigate???
We rely on Paeds that specifically concern her, like the neurosurgeon and Spina Bifida Dr as they are through Medicare, we can't afford a private Paed...
Trial and error like all of us unfortunatly, The pead should be able to work out doses for meds, Does she vomit alot, I know with DD her motility isues start from her tummy, and work there way down, She doesnt use her stomach at all that is on straight drain, she also doesnt use the first part of her bowel either we feeds her and medicate her into the second part of her small bowel, We know the rest of it has bad motility as well but we dont know exact amount of what is efected, We attemted motility studdies here last year but after 3 days we couldnt get the probe to leave the itummy, The only way to test her motility is if we go to melbourne and ahve them surgical place the probes, being that she has already had loads of bowel surgery we are not keen to go there just yet.
I know how frustrating it is, We have been to hel and back with gastro issues with DD, even with a child that is dependant on intestinal feeds and stil not growing we stugled to get the gastro drs to help us, This year they got more invoved when her bowel once again failed completely after a operation and we couldnt get ANY feed into her at all and she droped back under 9kilos again at 4 years old She was only above it due to last years top up of TPN, After 16 weeks on TPN this year and another 3 bowel operations she is now 12 kilos, and the last month she has been somewhat managable Gi wise apart from 2 bowel obstructions that wound her up in the resus. Out of all of DDs issues I find the Gi stuff that hardest to figure out.
7rugrats
11-10-2010, 22:23
Oh poor little thing to get NEC at 26 weeks, Im glad to ehre he got rid of his bag, My DD has always been a really tiny one also, she is now a great size thanks to 16 weeks of IV food this year, it seems to be a yearly thing for her that she needs a masize top up of IV nutrients. We have tried every thing to make her grow but she cant tolerate most things, Finaly aftr 4 years we have her on a feed she can tolerate ( well as wel as she can tolerate anything else) and that vivonex she reascts to everything including neocate and elecare.
What feed is he on to help with absorption ?
He is on Infatrini formula and domperidone
You have been thru so much with Miki...I am glad you have found something that she can tolerate.
Tripletime you have had it all with your three...there must be days you are just exhausted. I hope you can find something that works for T.
Widget it doesn't sound right that you can't see a GI...it is sad to hear your LO goes through so much pain.
We have an ample supply of microlax lol it's over the counter, pick em up from any chemist without a script... Same with the movicol...
Oh, we also tried physillium husk or what ever it is... It's a fine grainy sugar like packet like straight fibre I think... That did nothing for her...
as I said I have no idea or what is and isnt over the counter DD gets all her stuf from the hospital,
Have you tried glycoprep, and ducolax and motilium, have they tried mass doses of microlac daily all the time ?
Hi girls. My DD's issues are nowhere near as bad as your little ones, but when we saw her paed GI in August he put her on Osmolax because Lactulose wasn't working for her. It's supposed to be better than Movicol.
He is on Infatrini formula and domperidone
You have been thru so much with Miki...I am glad you have found something that she can tolerate.
Tripletime you have had it all with your three...there must be days you are just exhausted. I hope you can find something that works for T.
Widget it doesn't sound right that you can't see a GI...it is sad to hear your LO goes through so much pain.
Infantrini is a pretty hard one to tolerate from memory it has dairy protein in it doesnt it?, If things dont improve hopefuly they will try him on somethine more broken down.
This info is about the one that we have most luck with Ducolax, its works diferntly to all the other meds that you have spoke about Widget, It stimulates the bowel to move as apose to adding water to the stools, or lubdicating them.
here is the info about
Various substances can stimulate the gut and thus cause contractions. Most cathartic medications, such as bisacodyl (Dulcolax), work in this way by directly stimulating the myenteric plexus (nerves in the wall of the intestine). Strong cathartics given either rectally or orally can be helpful if a strong, definitive contraction is desired. These drugs may be useful in trying to clear a constipated stool. Such drugs are best used intermittently, as excessive use may result in a refractory bowel (the bowel goes "on strike"). Other agents, especially senna, may provide a gentler stimulus around the clock, thus counteracting round-the-clock bowel-slowing drugs, such as opioids. Senna is usually started as one to two tablets (187 mg each) qhs and can be advanced to four tablets BID.
gizmoduckus
11-10-2010, 23:20
Dd has irritable bowel she is always getting diahrea for no reasons at all she is 4 and can still not get to the loo in time.
It is possible that her diarrhea is linked to constipation. From all that I have read, if she has a blockage somewhere in her bowel, other waste just turns into diarrhea so that it can pass it. It only comes in small amounts and the child usually doesn't feel it coming. If you look up soiling, you will find lots of information.
My little man DS4 (25 weeker) got NEC (necrotizing enterocolitis) when a week old and perforated his bowel so had a colostomy bag for several weeks.
He is now 9mths old and has failure to thrive, he is only 4.7kg.
He is a severe vomiter but they are thinking that he is not absorbing nutrients calories due to his past bowel problems.
He is on extra calorie milk and three solid feeds and still not gaining.
He gets very constipated and his poos are big hard lumps that often make his bottom bleed.
Entercolitis is a big worry of ours, our DS2 is at great risk of getting it. I am so sorry that you had to go through that when your little one was so young.
Thanks M2M... I was going to reply but we went to get DD1 ready... FH made her pinky swear she'll do a big poo at school tomorrow as he believes she can pass it...
I'll be looking into ducolax!!
No she doesn't vomit usually though randomly throwing up saliva the last 2 weeks... Only been 2 days but still... Once she's up for a couple of hours she has her colour and not cold to touch anymore... I make her have a small glass of water she has to keep down (drinking it in her time) before she can have anything... Once she's had the water she's fine... Just freaks us all out when she wakes up spewing...
We really think her nerves are the problem, as well as she's scared to push it out, we've been teaching her to push with her tummy when she's on the toilet but she tenses her bumhole... She has the muscles there, the problem is definitely inside... She'll be backed up to the max, X-ray will show full colon, full bowel, full intestine, but she's soft to the press all the way through... Occasionally there'll be a couple of harder rocks about the size of pods (the biscuit lolly pods).
Can't remember anything else previously posted, PITA to scroll on the phone!
TripleTime
12-10-2010, 09:22
TripleTime you have had it all with your three...there must be days you are just exhausted. I hope you can find something that works for T.
There is many days that I'm far to shattered to think. Lately it's been also every day, I'm really tired & over being sick all the time which doesn't help. I'm really over fighting T over meds.
SpunkyMonkeyandSupermansMum
20-10-2010, 13:14
Wow. Thank you for making this thread. When I first came on here in early Sep there was nothing and I really needed someone to talk to as my 24day old son had gone in for surgery on his bowel!! There was nothing then but I am hoping that this may help me deal with everything we have been through over the last 6wks.
Welcome!! There are a few of us here. I'm surprised it wasn't thought of before... I see others talking about bowel stuff all over the place but there was never somewhere we could go when we needed a bit of understanded support...
I know there's more out there too!!
Welcome,
Sorry to here your lil one needed surgery at 24 hours old poor little thing, Hows bubs doing now.
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