Bowel impactation

[Pink12345678]

Hi there I hope someone can help my 9 year old daughter has been in hospital for impactation of the bowel this was end of April in May we had another X-ray that shows no change the mass at bottom has cleared slightly but all at sides impacted still she hasn’t been to school as in too much pain and I’ve been told to keep up on movicol can anyone help! I’m so worried to why this is all still stuck and it’s effecting her everyday life

[Misty10]

Hi pink sorry just seen.please watch the poo nurses video also join Eric website. She still needs to be disimpacted. I know how u feel when we were discharge from hospital had very little information. But do not stop the movlcoil I made that mistake.

[Frustratedmum1]

Hi. I can relate to where you are. When they do discompaction what did they use? Reason I ask my son was on 12 movicol for about a fortnight and nothing was happening. He was admitted into hospital and they gave him high doses of sodium Piculate and senna which got things moving but not fully cleared him out. What ever you do keep going with some form of.medication because if ir gets worse it is extremely hard to stop them compacting again. Swimming can help give them comfort. With my son it tends to reduce the pain for a short period of time. The other thing was I think it helped move some of the blockage. Deep baths help my son. He sometimes rolls on a gym ball. Another thing that gives him comfort is skins(tight sports clothing) Try and get her to be active which is hard when in pain and they don't have alot of energy as this can help get things moving.

A toilet routine can be beneficial in the long term. Another thing to consider is there a food in her diet that could be aggravating things.

You are not alone.

[Pink12345678 in reply to Frustratedmum1]

Thank you so much for this reply I’m going out of my mind as it’s the pain but my daughter is having a transit study X-ray next week so I feel I’m getting somewhere as I honestly think she is still blocked up we are in movicol but no more sena

[Frustratedmum1 in reply to Pink12345678]

On a positive note you have got a transit test so that is a step in the right direction.

I'm not going to lie it is heart breaking seeing them in pain but when it moves the pain may get worse.

At the end of the day you know her the best. Follow your instincts and you won't be far wrong.

If you think she is blocked and you are not at the maximum dose of movicol I would look to increase it. I have been in positions where i have doubted myself and not increased the dosage when I thought My son was blocked and then I ended up with a harder task.

I find circular movements of their abdomen can help. My son likes a hot water bottle when things are getting really bad.

[Judge79 in reply to Frustratedmum1]

My son had disimpaction 10 days ago. Got to the watery stage and gp said he was clear. The pain however has not gone away. Does this mean he is still impacted or is it something else causing the pain? He has been to the toilet every day apart from one since stopping movicol. He had been in pain on and off for twelve months but last three months it has been constant. Seeing a specialist in two weeks.

[Frustratedmum1 in reply to Judge79]

Hi ya. There is a chance he is still impacted. What I would do take him to the doctors get him checked over and make sure it is nothing else first. This is what we get advised tondonquite regularly. With my son he goes every day but he still gets blocked up. I would look is he doing the quantities of poo you would expect. With my son there is a change in behaviour when he is blocking up and also his appetite changes. If you can identify these signs it can help you alter the meds accordingly to hopefullynprevent them blocking up. It's alot of trial and error.

[Pink12345678 in reply to Judge79]

Hi there I also have the same problem with my 9 year old and she’s off to have a transit X-ray tomorrow she had to come off movicol and stuff to have this done but has still managed to go to loo but it’s the pain she is in she can hardly walk! Wakes with pain hurts when she sneezing I really feel there’s something more to this and I’ve had to fight for things to happen! This has been going on now for 3 months now she is also down for MRI but await to hear

[Pink12345678]

My daughter has had a transit study it showed the capsules still in there is this normal? As how I read it was if still in can indicate problem with bowel. She still continues in so much pain she’s lost 3 months of school now as pain so bad she’s up in night so so tired and doesn’t help her iron levels are very low now which they weren’t before?? Ive has to fight for doctors to listen and still now they’ve just left us! Saying X-ray is ok but I did chase MRI and we have this tomorrow so fingers crossed I just want this pain to stop and I want answers can anyone relate or help??

[Frustratedmum1]

I understand your frustration and anger for the lack of help when our children in pain. When my son had his transit test there were quite a lot of capsules remaining in his system. They told us he had a slow transit time.

Just follow your gut and don't be scared to keep ringing. The best bit of advice I was given was never loose your temper with the medical profession. Try and keep your calm and stern if need be. This can be very hard to follow. I hope you get some answers

[Pink12345678 in reply to Frustratedmum1]

Thank you yes I’m always as calm as I can be! If anything I end up in tears!! Lol. I just can’t understand why my daughters still in all this pain has abdominal swelling and just in so much discomfort in a way I hope the MRI shows something

[Frustratedmum1]

I will keep my fingers crossed for you.

[Pink12345678]

I’m now back in hospital as my daughters MRI showed she was compacted with poo still yet I was reassured she wasn’t !! Daughter now has the tube and kleen prep I’ve asked for another MRI after kleen prep so I can see it’s worked but the doctor we are now under is saying it’s not needed? I don’t want to leave this hospital till I know she’s clear, can anyone help or advise

[Judge79]

Hi sorry no advice but just to say I am still in the same boat. I’ve been back and forth to the hospital this week with my son still in pain and GP saying he is not constipated. Finally had an X-ray to reveal he is severely constipated so disimpaction regime started again. On day four today and still no movement so hospital have said to give senna at night and continue until he is up to 12 movicols. Hope this works. Poor kids.

[Pink12345678 in reply to Judge79]

I’m so sorry to hear all this have u been offered the kleen prep? It’s horrific to be honest and my daughter still in so much pain it’s like the doctors don’t believe her

[Judge79]

No not been offered kleen prep. He had a large movement today but the pain is still as bad. I am confused, surely the pain should start to lessen as the bulk is removed? My son is also getting anxious that the doctors don't believe him.

[Judge79]

Has the klean prep emptied her bowels?

[Pink12345678]

Hiya we have been discharged now! It’s been the most horrific hard time and I’m not sure if this will be the end of it but must stay positive! So the kleen prep hasn’t emptied bowel completely I was able to compare the X-ray and could see a massive difference but still could see she’s bunged up, I’m seeing consultant I. 2 weeks time but I definitely get wherevyiur coming from with the pain as no one seemed to take my daughter seriously and believe her . I really hope your son improves all I’d say in all this is be preistant with the doctors hear what they have to say then you have ur say as after all you are the parent you know your child best. What medication are you’d ur son on

[Narla2020 in reply to Pink12345678]

After my daughter having Kleen prep last year her bowels are still not right. I have been to 3 different hospitals as I have referred myself after drs saying this was just mild constipation which now Sheffield childrens hospital has said its IBS. Well she is 9 years old now been like this since 18 months old. She has just started again soiling her self. She is on two laxtivies was on six before. I am still not happy about her taking laxtivies but doing what the consultant says.

Hope your daughter and you are listened to.

[Judge79]

Up to 10 sachets of movicol and senna. We are also waiting for a consultant appointment. Really thought this would be the answer to getting rid of the pain. So disappointed for him. Is your daughters pain still the same even though the xray shows an improvement?

[Pink12345678]

Whow slot of movicol I’m home in 2 sachets twice a day but 15 ml of senna at night. Yes she said earlier to doctors it felt better but I think she said that because she wants to go home ! But I’m gonna keep close eye what pain is ur son having? Chloe’s was there all time and in particular when walking and sneezing it’s effected her life for 4 months and that tube was horrific

[Judge79]

Pain has been there constant for four months too in his belly button area. He describes it as stabbing pain. It doesn't seem to effect his movement but it hurts him to have a wee. Fingers crossed your daughter has some relief from now on. Did they say why there is still some blockage and what they are going to do to get rid of it?

[Pink12345678]

Have they done any scans on ur son ultra sound? Wee sample? Sounds exactly where my daughter gets her pains. They said it’s no obstruction now just pooh and there is a difference they tell me! Yet I have sadly lost all faith in doctors as 8 weeks ago told she was all clear but I demand a X-ray before they took tube out and I could still see some pooh but nothing like before I have follow up with consultant next week so go from there but told the senna will now get rid of the rest that and movicol as for tummy they want to see how goes as can’t pin point it as nothing showed on blood tests or X-ray . I hope this helps all I’d say is keep fighting we shouldn’t have to but our kids shouldn’t have to be left in pain

[Judge79]

Exactly the same here. Ket saying he was not constipated and then when they finally xrayed he was totally blocked up. All blood tests gave come back OK. Had an appointment for an ultrasound come today for next month and waiting for an appointment to see a consultant. We go on holiday yhe end of the month, was really hoping it was all going to be sorted out by then. ☹️

[Pink12345678]

Bless you we are the same go away at end month and I’m still not convinced my daughter is over all this. The kleen prep made her really unwell though so the only option now is to continue with senna and movicol it’s not like she’s not going but its the pain she is left with and this is what no doctor can say what it is my daughter will cry the moment someone presses the tummy! She’s missed 4 months of school and I’ve missed 4 months of work and my daughter won’t be going back now as she’s so weak and tired I may send her for few hours next week but I’m gonna see how she goes. I’m so glad to hear you have X-ray as this is really what we need but doctors are so reluctant to give but this is the only way they can see, my daughter still has pooh there on X-ray but compared to the X-ray in May it looked clear , I didn’t want that tube taken out till she was completely clear of pooh as that’s what this kleen prep is supposed to do so when she still had pooh there I asked why? And was told we all have pooh inside us and what my daughter has is no obstruction now so with excerise and medication it should improve yet hard to do the excerise as in pain , let me know how everything goes I wish you all the best and like I keep saying keep fighting!

[Judge79]

Hi just wondered how your daughter is doing now she has had a week to recover from the treatment she had in hospital. Is she still in pain? My son got to the watery with bits stage following the disimpaction regime so I have dropped the dose down but he seems to be in more pain now than ever. I thought once the blockage had gone he would feel better but that doesn't seem to be the case. He has an ultrasound in a week so hopefully we will get some answers.

[Pink12345678]

Hiya I’d love to be saying to you it’s all worked and no more pain but this isn’t the case! My daughter isn’t going to school still as the pains are so bad and even walking hurts I needed some food yesterday so she had to come with me but ended up on the floor as too painful, how can this be right?? I’ve up the senna and movicol we see consultant tomorrow but if I don’t get anywhere I’m going to ask to be transferred to Southampton hospital as apartley lots of bowel doctors there for kids. This is having such a massive impact on everyone now I’m not sure how much more I can take! I really thought the tube would of worked but they had to stop it on day 2 as she had a fit! So I doubt they would do that again and I definitely don’t want to see her go through that again it cleared some but not all as I asked to see X-ray as I’m not sure if I told you but the doctor we were under was given me false hope, and it wasn’t till my daughter had her MRI it showed she was completely blocked! So I’ve had months of thinking it’s ok and the pain is related to bowel when infact she was completely blocked. I really hope the pain stops for your little one does it effect there day to day living? They say to keep them active but my daughter can’t even do that! I almost feel like taking her up to the hospital today what I want is another MRI on the tummy and for her pooh to be tested is well as this can show chrons also I’ve been reading up in twisted bowel?? I know we shouldn’t google but I do! And my question to the consultant tomorrow will be ..why is she in such a mess how had this happened? Why would she need laxatives to help her go? Is there something more underlying with the bowel ? We go away again soon and last time had to come home early I don’t want all that again I really need the doctors to start listening to me.

[Judge79]

Oh no! It is so frustrating. Hopefully the consultant will have some answers for you tomorrow. I am still waiting for an appointment. I have been put in touch with specialist community children's nurse which is helpful. The docs told me to reduce to 2 movicol following disimpaction which I did and now 2 days later he is blocked again. So I called the nurse today and she told me to keep him at 6 for a week then 5, 4,etc I just find the whole thing so confusing. How much movicol is your daughter on? Is she pooing normally? I feel exactly the same as you. I have no idea why this has happened. He never seemed to have constipation and then all a sudden he has a blockage. I'm worried there is something more sinister causing this. He has had a lot of time off school but he wanted to go this week so he is putting a brave face on. When he is distracted he said the pain isn't as bad but when he comes home he just wants to lie in his bed which is not like him. Hope tomorrow goes well and something is finally sorted.

[Pink12345678]

That’s like my daughter if she’s busy doing things it’s not too bad , she’s on 4 movicol a day 2 in evening 2 at night st 15ml of senna yet I’ve given more this week and all she’s doing still is small little nuts! And she’s in so much pain like you I feel there’s more too all this and I will listen to what he says tomorrow but he then needs to listen to me as I cannot carry on like this my daughter needs her life back x

[Judge79]

How did it go today?

[Pink12345678]

I feel so sick! So fed up! So my daughter has a antidepressant to take as doctor thinks some if this is mind over matter! Honestly they just don’t get it! She now has biscoydl to take and senna but if not gone in next two days we are to be admitted in. It went from not having any further investigation to let’s see if this works first’ I’ve got a referral to Southampton but could be months I’m seriously thinking of private now but not sure how itvall works plus I really want a MRI as I was told where my daughter do so packed with pooh it wasn’t clear enough so I said this to the dr today and asked about under lying issues he sat and just went quiet he was thinking but had no reassuring answers for me! I’m thinking of getting MRI done privately and if it comes back with stuff then I will be going to different hospital

[Judge79]

Oh no you put your faith in the medical profession to help and have the answers and they don't! I had to have a private mri a couple of years ago. My gp arranged it for me. What is the plan if she is admitted in two days time? Did they say what they are going to do? Has your daughter had an ultra sound?

[Pink12345678]

He didn’t say the plan but I mentioned it can’t be kleen prep as she was unwell on this and he said there are other options! She’s started to go again now in the biscodyl but it’s all like water! And up most the night last night! Do u mind me asking how much the MRI was this is what I want and I’m not sure how it all works if I want to go private I also need to see a gastroenterologist and I’ve been referred but can take ages so thinking of private also unless I just go to my g.p for now?? Thing is I’m under a consultant already but not gastroenterologist yes she had ultra sound back in May and all came back ok ..well so I was told! Sorry I just don’t know what to believe anymore. How are things with you

[Judge79]

Where do you live? We live in Birmingham. Your NHS service seems slow in comparison to ours. We were sent to paediatric assessment unit and given blood tests and an xray that evening. Told to start disimpaction regime. Had an appointment 4 days later back at PAU. They have tested for coeliac and colitis results take four weeks. Put in touch with specialist constipation community nurse. Ultra sound booked for two weeks later to see if disimpaction has worked and see if there is anything else causing the problem and then I have an appointment with gastroenterologist for two weeks after that. Would have been a week but we are on holiday. So a month in total wait. When I went private I think I paid £200 ish for mri and £70 for consultant. That was five years ago though. We have reduced to 4 movicol now and stopped senna and he is going but it is still mushy and still in constant pain so not sure if that means he still has a block?? He seems better in himself but he said he doesn't feel any better which puzzles me! Have you had your daughter tested for food allergies? I tried cutting out milk but this has made no difference. Also like you I have been searching for answers on Google and parasites can cause this and I was reading a thread on hear last night and one mom said her sons was caused by a parasite. It is as if the doctors can only identify the symptoms (constipation) and not the cause!

[Pink12345678]

My thoughts are the same as urs they just say constipation yet I’m almost sure more than this like why has this happened? And why hasn’t the kleen prep worked?? I was told it emptied bowel completely, has ur son had a X-ray? These are more detailed I was told as is a MRI yet they won’t do this again and I’ve been pushing for this for ages! We live in Hampshire but trust me it’s just as slow 4 months and still not any better . My daughter is off movicol now and on Biscodyl again! And senna . That doesn’t seem too bed the MRI cost I’ve been told I need a referral so I suppose I ought to pay to see the consultant I need to first then get the referral? It’s all such a worry as I told the doctor we saw on Friday she’s gone backwards again little nuts and straining which she never used to do? I was told not to play around with first as could make things worse! But I asked if he was sure there was nothing else to test for and he couldn’t answer but quick to answer my questions like is it chrons? Or any of the other things they haven’t tested for and he said straight away ..no! But how can he be sure? So I asked for the referral and he said it will be months before we are seen I don’t think he liked me asking for referral as he has a interest in geo but not one I need one that deals In that especially after being lied to as well . Has ur son tried bisocodyl

[Judge79]

He has had an xray and could see he was totally impacted. He hasnt had biscodyl. I think the movicol is enough for him now blockage is clear. My mom suffers from constipation all her life and she said that the senna causes stomach pain so I wonder if this is what is still causing the pain. If your daughter is still doing rabbit droppings then she is still severely constipated. Did you do the disimpaction regime with movicol?

[Pink12345678]

Yes movicol senna and bisocodyl tablets then we came off senna in May and biscodyl as they thought this was causing the pains . The biscodyl seems to be working better today she’s gone more poohs that are better and not little pea sizes ! It’s so hard to know what to do as I’ve not had her complain as much today we have been at a family party and she’s been in bouncy castle too and no sign of crying In pain I’m thinking of not tushingvthe private route see how she goes for next few more days as I have the referral In place . Yet I need to call the consultant tomorrow as I’m not sure how long to keep her on the biscodyl as it’s a strong tablet to remove all before bowel surgery so it’s not something she can keep taking I’ve reduced her to 1 tablet for now and I wonder how it will work if she had non? How’s ur little one doing? I’m surprised they’ve only given u movicol if X-ray showed blockage as I was given senna and I’d recommend the biscodyl as they have really helped my daughter

[Judge79]

He was on movicol and senna to disimpact the blockage but now the blockage is clear (I think) just movicol. He is going to the toilet daily now but still in pain. It is hurting him to bend today but he has still been playing so can't be too bad. I am trying to not mention it as it is driving us both mad. I will find out when he has his scan on Wednesday if there is still a problem so will let you know how he gets on.

[Pink12345678]

Hiya yes please let me know how it goes I do hope it all goes ok it’s this ongoing pain isn’t it as my daughter is the same , I called the consultant we are under this morning about the medication as it’s gone the other way now and I can’t have it like this for her so he actually asked me what I thought!? Seriously! Anyway I’m taking her off biscodyl for now but remains on senna to see how that goes I asked if he could possibly put the referral to Southampton as urgent given that we’ve been messed around he didn’t say yes and he didn’t say no! But he has sent letter now so I may be able to chase it all soon. I wonder why my daughter keeps getting blocked up I think it’s something more like a lazy vowel or twisted? They just don’t seem bothered yet we are the ones dealing with it all and see them in all this pain. Let me know how Wednesday goes x

[RCL9]

Hi there. My daughter is going through the exact same thing just now. Ongoing since sept 2018. Been in hospital 3 times. She is in for an endoscopy today. Has missed her whole 1st year at high school and affects her mental health. There never seems an end to this. Nhs took so long to even get her in just for the endoscopy. Its a very painful time and im hoping they get to the bottom of it (excuse the pun)

[Pink12345678]

Bless you that’s a very long time! Why do they take so long? I hope this helps ur daughter have they said it will get rid of it? I thought the tube would but it didn’t! We e been referred now but I just want this all over I want another MRI but they just won’t do it but maybe with a referral they will see the last MRI was so blocked up they couldn’t see anything else

[Estagel]

Hi my daughter has had problems since jan - also year 7 - perhaps we could put the kids in touch with each other - I know mine feels really alone and embarrassed ....

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[mabelrose4]

Hi there , just caught up with this post and wondered how your daughter was . My 10 year old daughter went through a much milder version of your daughter . We saw a private gastroenterologist and had allergy testing . She tested positive for a mild wheat allergy but we have since discovered that is mainly onion / garlic / dried fruits and most veggies and raw fruits that were causing the problems. We had to take her off all food except potato for four days and then incredibly slowly build different food groups in. We couldn’t afford to keep with the consultant after two sessions so I read lots of books on a low fodmap diet for ibs . We very slowly over 6 months built food groups back in. She has had no tummy pain now ( she had severe stabbing and cramps which caused hospitalisation three times and three months off school).

We are still working on it but after having had to stew all fruits with stones / pips she can now eat an apple raw with no pain.

She had a raisin by mistake the other day and was doubled up for two hours ( 4 hours after ).... so dried fruits are still a ‘ no no’

So I have self diagnosed her with ibs ... everyone is different but her life has turned around. She is still constipated, in that her poos are very large , but goes daily and has not been impacted since last October . She is still wetting the bed every 6 th night .. but again I am now being able to link that to food ( dense red meat).

Take Care