I am at my wits end. My sin has suffered with CC since he was 1 years old. On Movicol since diagnosis. Been in hospital more than a handful of times for featal impaction. Last time last night when he was given enema. We have been up all night as since he is having awful stomach pains. This is not the first time it had happened too but not as severely (the pain) I feel. The hospital told me it was “normal” and that I should be continue to give him Movicol.
He is on 2 sachets a day. We increase if he has failed to poo every other day. But even if he has poo'd a bit everyday we still get symptons and issues. His diet is balanced. Lots of fruit, good with veg, good at taking on fluids.. cereal, brown bread etc. I am literally out of ideas. Please help me. I feel like I am drowning.
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Perhaps he is intolerant to certain foods? One of my daughters gets constipated when she has cow’s milk. It took a while to figure it out and we had to do a strict elimination diet (under guidance of naturopath/dietician).You may have to go private as I didn’t get much help from the NHS as far as this was concerned (but that was 7 years ago).
I think you need to do disimpaction to clear away all the old poo, then put him on a maintenance dose of movicol - otherwise it could be the poo he is passing may just be overflow and not actually removing the blockage. Or another thing to try is to cut out diary - this seems to alleviate gas in the stomach - hope it gets better for you
Apologies for not replying sooner. We were in hospital.
for all those asking disimpaction failed include 2 enemas done at a&e and ward admit klean sweep through his NG tube. They end up needed to do manual washout on the 7th. We got discharged the following day however despite having higher strong dose of cosmocol sachets since discharge he still hasn’t open his bowel since the procedure (4days ago) and his stomach is still very distended like extremely swollen. I feel they only treat the immediate situation and shrug us off but not as close to treating him and I’m now really scared we are due again for another emergency scare as i have no hope the cosmocol will work this time at home when before all medical/medicine intervention failed (really higher dose of cosmocol, 2 enemas, klean prep through ng tube)
I’m beyond worry with my self and I don’t know what to do. I feel the medical team just shrug us off without looking what is really going on and I know I’m not a medical profession but I’m just a very worried mum and I feel his problem goes beyond normal children constipation and they maybe underline cause going on. His diet is good and drinks plenty of water a day about 1 litre
You say his diet is good and healthy so it could be physical issue, and to me it also sounds like he possibly has issues/sensitivities with certain foods. Do a blood fingerprick test with a naturopath/functional doctor to measure the IGG in his blood to see what foods cause him a delayed reaction, one that you could not tell is immediately causing him bloating, constipation etc. My son developed motor tics, we did a test and he showed high IGG for gluten, dairy+others.. After 6 wks of avoiding those foods he now rarely tics.
Hi, my first thought re bowel issues is that it most likely has to do with something that we put inside the body by eating. It could be a mechanical/physical thing too but a doctor would have to look into that to make sure everything works ok. My son has irregular bowel movements so as well as igg test, we're also waiting for results from a stool test to show if there are any pathogens or candida overgrowth.. It tests a bunch of things and i wonder if that's whats slowing his bowels? Ill let you know an update when we get results. Good luck to you too!
2 sachets is a low dose. Have you done a complete disimpaction? Watch the poo nurses video. Try to find a GP who is really familiar with constipation or get a referral to the continence service if you have one locally. It’s best to get on top of it now as my son is nearly 14 and has severe problems due to long term constipation. It often helps to add a stimulant like Senna to the meds but best to get advice from a health professional.
Thank you for taking the time to reply. We have done full disimpaction before up to 8 sachets a day for 7 days before his manual washout procedure as it didn’t do nothing and failed and now after the procedure which is now 4 days ago we are doing another disimpaction. He is now on 6 sachets a day which was yesterday and will be 6 today too then we are gonna try 8.
I think you miss read my first reply I said “2 anemas” not 2 sachets
you wrote, “he is on 2 sachets a day” for complicated constipation that is a low maintenance dose. I have found I have to disimpact (12 sachets daily) for weeks sometimes and then reduce very gradually down. Often no lower than 4 sachets daily. My son is in and out of hospital so I completely understand the trauma of it xxxx
oh you were reading on my original post not my reply but yes you are right he was on 2 sachets a day as a maintenance dose before stopping going on the 23rd August…Since we have done disimpaction regime, 2 enemas at a&e, klean sweep where they admit the child to ward and put NG tube on him and start pumping huge amount of laxatives water down his system. All these failed which forced the medical team on the 7th September to do a procedure under general anathestic for manual clean and washout. They discharged us the following day but he still hasn’t go since and are now on another disimpaction regime but I have little hope to be honest after all failed medican intervation include the klean sweep before. The klean sweep just caused him horrible tummy pains and kept vomiting before his medical team decided to turn it off and moved us to great ormond hospital for the procedure.
His tummy is extremely swollen too and he looks very uncomfortable. May I ask if its ok how old is your child? Thank you
EDIT: This is another issue I’m having is having him to drink all that in a day. According to the guide I was given by my doctor for the disimpact to go till 8 a day which we did for 7 days and It was absolute hell and traumatising for him to get him to drink all that. I’m not sure how I’m going to get 12 sachets down his throat for weeks. He is generally very good with meds but I think this just frustrates him having to drink it over and over a again especially his tummy is constantly hurting and sore
Thank you so much for your reply. It helps a bit to know you’re not alone
I really do understand, my son has had klean prep multiple times and also manual disimpaction once. He uses transanal irrigation system now. He’s nearly 14 and things have got better but still really difficult. He had NG tube this summer xx
we have been through so many disimpactions. Just had a coeliac blood test which looks like she is. We ended up having to do this privately with help from grandparents because GP is useless. Had a call from bladder and bowel uk nurse who was so good, had nearly an hour on phone with her and it’s a free service. We are waiting for bladder and bowel local service but waiting list is well over 18 weeks. In the meantime we had to start her in school in pull ups with half days initially due to toileting. Feels like we can’t wait any longer for specialist support. I feel for you and you’re little one. You’ve done everything. Maybe ask for food intolerance, coeliac and iron/thyroid tests.
I'm so sorry but also comforted to hear peoplpeoples struggles and worry for their children. My son is 7 and he now hasnt opened his bowls properly for 10 days! I took him to the GP as he was having issues peeing, stop/start and its actually due to him being so impacted which I was aware of. He's suffered from CC since age 2 and been a selective eater since I can remember.
We're in the UK and hospitals wont give children enimas anymore so hes nevnevenevenever had one. The GP this time seemed seriously worroed and said he could rupture his bowel. It jsut feel like theres not enough real support and not even good reactive support! As a selective eater, its hard enough to get 2 sachets of Movicol or Laxido down him a day ao I have to add Lactulose and Senna.
Im desperate too but been helpful to read responses here. Wishing you and your little one the best for a full solution and support. Its sooo stressful!
my son has had countless enemas in hospital incld in august this year. If you’re not happy with the hospital, go to a different one. Get in touch if you need further advice
Your post is heartbreaking, I can really understand how awful and scary this is for you. I think it would be worth giving the ERIC helpline a call (or bladder and bowel UK) to talk through what’s happening with a really well informed professional and help you find the right medical support available in your area. I agree with lots of the comments on here that the maintainance dose of movicol isn’t right (our maintainance dose was 5 sachets for a long time when my daughter was 4/5) and you may need other regular stimulant Medicines to help - but you need someone who understands all the factors going on to advise and help plan out a the steps ahead. Good luck xx
Thank you and to everyone who has replied. I haven’t been able to reply sooner unfortunately he has been admitted again. After manual evacuation and washout on the 7th September we got discharged on the 9th to start him at home disimpaction regime of 8 sachets a day (maximum he can have for his age) as the washout only remove poo that is lower part, the rest needs to come out by doing disimpaction.
We started that on the 10th Sept, by 15th nothing our GP added Senna and lactulose on top but still nothing so on Friday 23rd we got discharged after starting experiencing abdominal pains. They are trying again Klean prep (failed last time that’s why they had to do the procedure). I’m writing this on hospital bed next to him. They started him on klean prep today at 10am in the morning. They have managed to give him 2 and half litres of it today but still nothing so far. I can’t describe how I feel. I’m so scared, worried and exhausted. My hearts breaks for him and I don’t know what to do to help him. He is extremely uncomfortable, his tummy is so hard and very swollen and distended.
I have been trying to contact Eric but i can’t seem to get through. Is there any other way I can contact them? Their lines seem always busy
We changed milk from full fat to green top. We exercise every day. Dancing and jumping around the house likr people lol. Lots of fibre fluids orange juice.
Change milk, if not already on semi skinned, it dose make a difference. Lots of fibre try malt loaf/pruness,figs grapes. Apple juice. Lots of water. Toilet routine.
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