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Problems persisting after enema

Hi, I’m new to the site. My son has just turned 9 and has been terribly constipated for months. He had issues with constipation from 2 and half but we gradually took him off movicol around the age of 7 as he seemed to have stopped needing it (under the guidance of hospital doctor). We noticed the constipation in the last few months and after 4 GP visits, 2 disimpaction rounds, high maintenance dose of movicol, Senna, twice daily suppositories, I ended up at a and e with him and he was admitted for a high enema. Since then he’s been prescribed sodium pica sulphate 10 ml at night and up to 8 sachets of movicol a day. He’s been in dreadful pain and his behaviour has been violent and aggressive and very difficult to deal with. Now he’s stopped pooing other than soiling despite the high dosage he is on. I’m expecting to be back in hospital very soon if he can’t go. I just wondered if anyone else had experienced anything similar and come out the other side? It would be great to hear from anyone whose child has had hospital admissions and can tell me what they might try next. I’m hoping we won’t end up there Christmas Day 😔

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Hi, I actually thought I was alone my daughter who is 9 nearly 10 has been suffering from last two years with severe idiopathic constipation and slow bowel transit time it's been one hell of a road the last year and a half with every three weeks off going to docs/a&he Nd children's ward she has had scans done ultrasound and X-ray , she been on movicol since day one started on 2 sachets a day and were now on 12 sachets and have been for the last three months plus lactoluse 10ml daily plus 13mls of senna every night plus sodium picolsulphate twice a week and six buscopan daily plus pain relief this is my daughters meds every day and has been for a long time her tummy is always bloated and she looks like a pregnant women with it , she also feels sick 24/7 and has screamed in agony, we've been blue lighted a few times, they don't seem to be bothered with this illness and there isn't much around in help from hospitals, I've been fighting constantly with professionals to get help for her, her behaviour has. Hanged hugely where she can be violent due to this, I basically have to help her on toilet/clean up and she soils a lot to, we're waiting on a biopsy date to come through, I hope it helps hearing from someone with the same things my daughter has also had a few enenamas and controlled drugs to!! 😢

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I’m so sorry to hear how bad things have been. My heart goes out to you. Thank you so much for your reply. It’s so hard when they don’t respond to the medication and you can see it influencing their personality and behaviour. I was on the phone to 111 last night so now we are taking him to a and e today. The continence service has given us a rushed appt in January as he’s so severe and has already been in hospital twice (the nurse from there was really helpful on the phone and was the one who told me he needed to be seen in hospital quickly and encouraged me to take him to a and e). I don’t know if you have a community continence service where you live. I’m really hoping having someone supporting us with home visits may help us to support him to change things long term. You’re not alone and let me know how you get on. From the sound of it your daughter is on huge doses and still no better. It must be heart breaking 😢

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Hi yes she is on a lot and very heart breaking been through it badly and bless you to, how comes there incontenance nurse has said that sounds like you get better help than us and my daughter suffers a bit more, the NHS around here are rubbish and I've been reported to social services and they come out because the doctors at the hospital were saying I hurt her and am a over paranoid mother the funny things is they come out signed me off straight away, many thanks for reply

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You’ve clearly had it really bad and I feel for you. My son has been at a and e and had another enema today and they are reviewing him on the 28th Dec so at least they are taking it seriously. It’s so hurtful that they haven’t been more supportive of what you and your daughter are going through. I really believe it helps when people are kind and understanding, even if what they advise doesn’t work and has to be revised. I can’t bear it when they make you feel guilty and responsible, as if anyone would want to see their child in pain. I’ve decided today to up the pain relief as it’s such a struggle to get him to take the movicol and eat enough fruit . He’s on 10 sachets now. It must be a huge struggle to get her to take all her meds, he’s been reluctant as he can’t see it working. I need medical people to be supportive and listen as it then helps me to have the patience to deal with my son. Maybe you could see if you could get a referral to hospital psychology to help her manage her condition as it must be such a strain. Thinking of you and wishing you a calm peaceful Christmas 🎄 x

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I’ve just been researching and found a paediatric gastroenterology service elsewhere in the county we live so at our appt at hospital next week I’m going to ask them to refer my son to them. Just thought I would mention it in case you have paediatric gastroenterology service in your region

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Hi there,thankyou much appreciated ive asked the hospital to refer and they won't... we have appointment with consultant on the 11th this month x

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We are in hospital at the moment, he’s been admitted due to the extreme pain he is in. It’s such a nightmare. Let me know how you get on on the 11th, I will be thinking of you.

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Oh no sorry to hear that my daughter has been in agony but the hospital and that won't do anything for her she just has to suffer xx

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So....been in hospital 6 times now in 3 weeks and not getting anywhere, my son is puking and says it hurts to eat and drink and is constipated again...

so I got the GP to ring me tonight and I cried and asked him to refer him to the paed gastroenterologist in another part of the county and he is doing it!!!!! So I just want to say, hang on in there and if you don’t get any joy from the consultant find someone who will listen. I feel your pain xxxx

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Bless you both we’ve been through hell and back, professionals don’t seem bothered by this condition it’s not fair my daughters doctor is amazing but the hospital a different story we’re still waiting on a biopsy date to come through, weve Ben referred to early help and continence team and my daughter has been referred to counselling we have a appointment on Thursday with actual consultant and think I’m gonna he very powerful with words it’s not fair our lives have changed dramatically and the only thing she asked for for Xmas was a new bowel and she don’t want to suffer anymore she has been up last night in agony and hasn’t had any movement since Friday morning yet still on all medication Movicol 12 sachets a day Senna 15mls a day lactoluse 10mls a day sodium picolsulphate x2 a week,buscopan 6 a day and constant pain relief yet still nothing on day four xxx

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Let me know how you get on tomorrow. I’m really thinking of you and your daughter and hoping the consultant has something useful to offer. Things are no better our end. Feels like a battle that we have to fight on behalf of our children. Every day a struggle 🙄

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Hi hun thankyou, she’s been bad again and off school this week still on all medication and has had three lots of sodium pucolsulphate and nothing since Friday morning... she is flushed in agony and the list goes on... I’m hoping to but I’m not very happy with the way my daughter has a I suffer, why should we have to fight thinking of you both to thankyou xxx

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I really hope you feel you have got somewhere today. We are in hospital now, he’s had a high enema and managed a half kilo of poo after! I’ve asked them to refer but they want to do a bowel transit test first. But I think my GP is doing the referral today to paed gastro. It certainly is a battle but don’t feel alone as you aren’t and I really appreciate how much you have suffered as it has gone on far too long for you and your daughter. Let’s hope today was a turning point for you xx

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Wow bless you, we’ve had a really bad day to be honest we’re seen in cdc with her consultant and he has admitted us onto children’s ward.. because he said she is on all the laxatives that are available and there not working yet again he finds it strange and was basically stating that I don’t give her the meds so they want her in to see how she reacts to the meds in hospital absolute joke and very rude, he also stated that there isn’t much else they can do Andwill need go to Brighton if no success, I’m at my wits end it’s not fair all the suffering and bless you guys to xxx

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That sounds absolutely disgusting. I’m horrified by your treatment. There will probably be a PALS Office at the hospital, you could talk to them about putting in a complaint. My son is also on all the same meds and they don’t work hence why he’s had 3 enemas in 4 weeks. Please don’t be disheartened, it sounds as though they don’t understand these things aren’t one size fits all. Your daughter needs to see a paediatric gastroenterologist. I literally found one on google in our area and told my GP to refer my son. Please keep in touch and stay strong and tell your daughter she’s not the only one as my son is in the same boat xx

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Her consultant here is a gastro pedatrician x where are you? X

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We are in Norfolk, nowhere near Brighton unfortunately. I really can’t understandthe attitude of your consultant , I’ve read online about kids who need manual evacuation and kids who are prescribed home enema kits. Sounds really frustrating for you. I would be tempted to get a second opinion if you aren’t happy with her treatment. Maybe going to Brighton for assessmentmight actually be a good thing? We will be back at hospital this Wed, it becomes a large part of yours and their life and when you say constipation it’s almost like you can feel people looking at you to say, “is that all?” One day she will be better and you have to hang on in there until the right specialist sees her. My friends daughter had issues for years with constipation and ended up with a diagnosis of something that was causing it but they had to fight and fight for her to see the right doctor. Stay strong, thinking of you both, hoping to leave hospital soon! (And hope you’re not there too long) xx

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Hey, hope you and your daughter OK. Thinking of you. We are at hospital all day Wed this week, I’m struggling to juggle work and my son not wanting to go to school.... let alone frequent hospital visits. I contacted School nursing and one of them is doing a meeting at school for us, I’m hoping that will help somehow. When you get the chance, let me know how you are getting on x

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Hey there hun bless you sorry not had chance to respond so Saturday night she kept telling the nurses she was to full and was gonna be sick I asked for antisiciness it got refused she then started being violently sick and the pressure was spoiling herself to we have been put in isolation so knocked us back on treatment plan and trying to go forward... we’re still in Worthing nothing been mentioned again about Brighton they had to stop the transit study test due to her could not take the last two tablets.., she had this test before which showed slow bowel transit... she had type 7 yesterday once but was a really funny colour a colour I haven’t seen before... her consultant was up on ward yesterday but never came in to see us like was supposed to... she don’t have a bug I’ve told them this is what happens when so conpacted but there unsure if it’s that or a bug she caught in here either way it’s not helped because her meds were limited for two days aswel and was hardly drinking so a proper set back! I lost my job last year due to all this and it’s a good job really because life is either spent in hospital or doctors we no w have loads of referrals and she is going to be having counselling and extra support meetings aswel for her, hope your sons ok and today goes ok please keep me updated are you on Facebook? X

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I’m not on Facebook but I am on WhatsApp, will try to send you a private msg later via this site with my phone number so we can WhatsApp if I can work out how to do it!! Better go, need to drop my daughter at school and then have the delights of hospital all day. So sorry your daughter been so sick, my son was exactly the same when he was admitted, was very gruesome, give her a hug from me and my son xx

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Hiya I’ve just joined the group looking for help, answers and to be honest to make sure my son wasn’t the only one!

My sons 9 and has recently spent 2 days admitted in to hospital the doctor told me and 15 days of not going to the toilet to give 12 sachets of Laxido and it will clear him out and it didn’t then 10 still nothing then 8 still nothing I felt like my doc didn’t believe us I went to a&e and they admitted straight after an X-ray he had so much fluid backed up in to his intestines they didn’t know what to do

He had to enemas and 1 week later is still leaking, I’m just at a point where I don’t know what to do he I literally soiling everyday before this episode sometimes I think it’s him it’s his fault he dose the care then I feel awful

Your not the only one I just hope that they all get sorted out xx

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Your poor son and poor you. Sounds like you need someone to help you through this, like a really good GP or continence nurse or one of the doctors at hospital. Hopefully at hospital they prescribed some medication to help his bowel stay loose enough. Impaction can be very difficult to clear in some cases. My son (who’s 9) is finally getting better but his bowel is still healing so he’s in nappies at present that the continence nurse has prescribed so we aren’t paying for them.

It’s important that they x Ray him again or the doctor feels his tummy to check all the impaction has cleared. If it has then his bowel will take time to recover, it’s all part of the process. Best he wears pads while he’s soiling.

Let me know how you get on xx

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Thank you for the reply! I didn’t know you could get the nappies on prescription (thank god ive spent a bomb on dry nites)

His on movicol 6 a day and sodium pisco, had the movicol before but never work

His really upset about the nappies I’m hoping before the new school term he just calms down about

X

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