Hi, I just wondered if anyone else out there has experienced their child being totally unable to poo without a high enema? My son is 9 and soiling 24/7. We’ve been to hospital approx 10 times since the 12th Dec. Before that we did 4 visits to the GP from Oct to Dec. We’ve tried everything, but it’s just got worse and worse. He’s having his 5th high enema tomorrow at hospital. We’ve tried micro enemas at home and they don’t work. Thank goodness we have apptmt with gastro paed on Tuesday (which I had to push hard for). He’s also been diagnosed with gastritis this past week (he’s nauseous, vomiting, severe localised pain). He was on such high doses of meds, I think it may have caused the gastritis. The picosulphate did make him open his bowels when he was on 10/15 mls a day but he was howling in agony and losing weight, unable to keep food down with severe pain so doctor agreed to me taking him off it. Anyone who has experienced similar pls reply especially if anything has worked for you, thanks
Totally unable to poo: Hi, I just wondered if anyone... - ERIC
Totally unable to poo
Hi Robinia! I would love to know if your son is feeling better now.
Thank you for asking ☺️ It’s been a very rocky road for the poor boy. Currently he’s improved from where things were a month ago. He had to have 2 klean preps in hospital as the movicol and enemas didn’t work when he got blocked up again. The second klean prep shifted loads. He stopped being able to fart which caused great pain and discomfort as he’s only been burping, not farting. He was only able to fart upside down before this for the past year anyway. He’s managing to produce poo now via soiling and it’s more than it was thank goodness. He’s on 3 movicols and 2 Senna tablets and 3 magnesium oxides every day. He doesn’t have any dairy or fizzy drinks or sweet corn or peas. He sees the chiropractor very regularly and has a hypnotherapist and an osteopath and a psychologist, a continence nurse, a paediatrician and a paediatric gastroenterologist. We are also hoping for a referral to a paediatric surgeon currently (continence nurse is hopefully organising that) I think the only answer for him long term is Peristeen (he’s watched the video and wants to try it) it’s just a wait until someone is prepared to prescribe it. His mood has improved and his behaviour has improved. He’s in school every day but part time (just the morning) as his pain is all the time and exhausting. But last week he managed trick or treating and fireworks and I was over the moon!!!!
I have learned to keep demands on him low and listen to how he’s feeling but also not allow him to swear and hit out and use the pain as an excuse. Tbh though normal parenting went out of the window when he was totally blocked with poo as it felt as though he was actually going a bit mental at the time.
I don’t think people understand the impact of constipation. My son was literally talking about wanting to die at one point (he said it about 4 times). But now the impaction has largely been cleared he’s a much calmer happier child who can cope more or less and he just wants the pain to go and to be able to fart. Thank you for asking 🤗🤗🤗
Thank you for taking the time to reply! My heart goes out to you and your boy. What a struggle!
I haven’t heard of Peristeen before. I just watched a video about it and it seems to be a very fancy bag enema. I’ve actually experimented with bag enemas, but low quality, messy, disposable ones. This is something worth looking into more. We are in NZ, wonder if it’s available here.
My son is 6 and we’ve been dealing with soiling for 2 years. We’ve used Movicol, senna, micro enemas, suppositories, bag enemas, disimpaction with Movicol, Pico Prep and got as far as being hospitalised recently for disimpaction with the NG tube and Klean Prep. But we’re back to using Movicol and Senna, at the paediatrician’s advice, and trying to get the poo out , it’s not working that well with the meds so I was wondering what else is there to try?! I’ll research magnesium oxide. What is it supposed to help with?
I’ve bought this Soiling Solutions manual online and tried micro enemas for a while but paediatrician wanted my son off of that. Never explained why exactly. He had stopped soiIing. But a recent X-ray showed he had impacted poo up in the colon where the enema can’t reach.
Anyway, we had an X-ray before being released from hospital after klean Prep and it showed the colon is now clear of poo. Did you have that done?
Then where does the pain come from for your boy? Sorry, don’t understand, my son can’t poo without meds but doesn’t seem to be in pain. And is the medication causing the problem with farting?!?
What do you mean when you say he can poo only via soiling?
I just read your old posts and understand the cause of his pain. It’s so awful!! The gastritis and not being able to poo even with the micro enemas.
Why not buy a bag enema from Ali express and doing it on your own until you can get Peristeen?
But I read about bag enemas in Soiling Solutions and it says to never use only water but always add salt. I can’t remember now the exact measurements, 1 l water and 2 tsp salt, I think. I’ll check and get back to you.
Hey thanks for your replies ☺️ No one has been able to explain the pain properly which is why the continence nurse wants him to see the paediatric surgeon who is a bit of an expert by all accounts. I feel like he’s coping better since the latest klean prep clear out. So at least we have a bit of breathing space. The gastritis is gone now I think. It’s an issue with motility and peristalsis I suspect. A mechanical issue which has been made worse by severe impactions. It’s just we have to be very cautious with meds as they greatly increase his pain and gastric symptoms. Good to hear from you 🤗🤗🤗
Has he had X-ray done to check if poo was cleared out of his colon after disimpaction?
No, they did x Ray before but not after. First klean prep he pooed a kilo, 2nd one 2 weeks later he pooed 3 kilos!!!! He has gastroenterologist apptmt later today so will let you know how it goes xx
When you mention Klean Prep, was it via a nasogastric tube? My son had the tube in for about 3 days in total, pumping liquid from 6am until 8-9pm., starting with 200ml per hour and increased gradually to 500ml max per hour. The stuff that came out was some brown water and then yellowish water with bits of undigested food. So I can’t tell how much poo came out. Just wondering how you know it was 1kg or 3kg of poo. Did he have a similar procedure done? Let me know how it went today!??
Hiya, he drank it, he had 1 litre for the first one and 4 litres for the 2nd one. They weighed the poo both times. The gastroenterologist wants to do a manual evacuation under general anaesthetic and then have him on highish dose movicol for 3 months plus. I’m going to try to get a second opinion but will be dependent on his paediatrician being willing to refer him...
I read Klean Prep tastes disgusting and it’s very hard to drink, especially when large amounts are required. Why not have it done with the nasal tube? Then it drips into the stomach and they can pump large amounts throughout the day. The paediatrician called this method the Rolls Royce of disimpaction. Ask them next time! Once the tube is connected, the child can eat, play, get around with the Klean Prep bag connected to a 4 wheel stick thing - don’t know how to call it.
What does a manual evacuation involve? I assumed until now that it’s a type of enema!?!
After disimpaction we were sent home and told to use Movicol and Sennokot tablets. Paediatrician asked me to figure out the maintenance dose, and on days when we miss a poo, increase the Movicol by a sachet the following time until the poo gets out, then reduce accordingly. I used to give 1 Sennokot but apparently for a 6 year old, the max dose is 4 tablets (1 tablet equivalent to 5 ml senna) so I am now giving 1-2 Movicol and 2 Sennokot pills. Poo is almost liquid but on some days, he still can’t poo.
I found some great info to explain our problem (maybe your son’s as well) on this blog:
What has been your son’s experience with Magnesium Oxide? Does it help at all?
I read that blog before and found it really helpful. The magnesium oxide helps shift the poo, I buy it on Amazon. The last 2 days I’ve been giving him 5/6 capsules instead of 3 and then taking him to the park after dinner and he’s managed to soil more which is really good for him. Movement helps his poo come out. With the klean prep I asked about a tube but the nurses said they didn’t think he would be compliant with it and said it would be worse than drinking it. They implied he would be stuck in a bed with it.
When we went to the hospital, it took 6-7 attempts to get the tube in. But a lot has to do with the timing. If the child eats, you got to wait 3-4 hours for the food to get digested, otherwise he vomits when the tube is inserted to the stomach. But that doesn’t leave much time until he gets hungry again, so I found there were small windows when it could be done. They gave my son an oral sedative (which takes half an hour to work) and afterwards they tried different things. Like trying to hold him down while Inserting the tube, and he fought them off, then wrapping him in a bedsheet while having 3 nurses holding him. They got it in but kinked the tube so they had to re-do it! We were in the hospital about 20 hours until the tube was in place. Then they hooked him to the stick on wheels and off he went to explore the hospital, it was about midday. He did not mind the tube one bit. Within half an hour he tripped and the tube came out! We went back to our room, the nurses came, rolled him in the bedsheet, without a sedative, and he was very compliant, the tube was back in a matter of seconds. He was fine after that. Once the tube is in, he could eat, play.
We were in the general paediatric section of the hospital and a very large percentage of kids had a nasal tube (obviously for different reasons). But from babies to teens, they had a nasal tube so there’s a way to get it in.
I only wondered later why not have it inserted under general anaesthetic?!
Btw when the nurses were struggling to get the tube in place, I asked how do they usually do it - the paediatrician said they get at least 3 kids a week for Klean Prep - and the answer was that the kids who come in are usually older than my son, and therefore it’s easier to insert the tube, that’s what they implied.
Is your son a very active child? Mine is very active, rarely sits down, lots of sports, but it doesn’t seem to help him poo.
I just read somewhere that coconut water hydrates and has some wonderful benefits, I’m giving it a try. I’ll buy some magnesium o ide too.
He’s extremely active naturally but when the pain is bad he is less active. I’m trying to avoid another hospital disimpaction while seeking a second opinion and hopefully find someone willing to prescribe the peristeen. What is so frustrating is I’m sure it’s cost that’s a big factor. The continence nurse told me it has to go to the commissioning group before it can be agreed. I’m sick of him having to go to hospital, it’s absolutely ridiculous as he’s willing to manage it himself and is keen to try the Peristeen and he’s nearly 10 so needs to have some control and privacy. I’m going to speak to the patient advice liaison service at the local hospital and get some advice. Sick of being fobbed off!! And don’t believe manual evacuation and movicol is the way to go
We're in NZ so I don't know how different is the health system compared to the UK. We are dealing with this in the public health system.
Have you looked up bag enema? i guess you called it high enema. I think it serves the same function as Peristeen. If leaking is a problem, look up a 30cc Foley catheter (the inflatable balloon that prevents back flow).
'Base enema solution formula is 1000ml water and 1.5 teaspoons of salt. Bring it to body temperature at administration. Never use plain water enemas! If plain saline solution does not trigger good bowel movements then you may add certain substances to the solution, never to plain water.
You may add 5-40 ml glycerin to 1000ml of base saline solution.
Castile soap may be added.
Fleet saline sodium phosphate solution may be added.
Do not combine any of the above added solutions to your base saline solutions. If you have continuing contractions or accidents you may have to do a rinse-out enema with the base solution to remove any lingering added irritant.'
In the past when you tried micro enemas and said they didn't work, what exactly did you use?
I ask because here in NZ we can buy (and were prescribed) Microlax 5ml enemas. They worked for us, but I read they are Glycerin suppositories, and so not the most irritating colorectal agent.
'Rectal agents vary in how stimulative they are. The more irritating these agents are, the more powerful the large wave contractions (cramps) will be for moving stool down and out of the rectum. It is important to understand that the whole gastrointestinal tract has a protective mucosal lining much like our nasal passages. Colds and an irritated throat are common examples of inducing plegm....the same happens at the bottom of the gastrointestinal tract with overly irritating oral or rectal agents......the least provocative and irritating agent is the solid glycerin suppository....then liquid glycerin suppositories, then bisacodyl suppositories (it can cause irritation and mucous discharge in some children) and sodium phosphate enemas (Like Fleet). The Fleet sodium phosphate agent is a very concentrated and powerful enema solution. Because it is so concentrated it will quickly draw in abdominal fluids from the surrounding more concentrated abdominal tissues through osmosis. This will add a considerable volume of liquid to the colon. This should be more than adequate for clean out purposes for most children. Watch and discontinue use if you see a large mucous discharge, diarrea, or pain creaming reactions. Limit one Fleet enema per day. Most children will be responsive to the above convenient off the shelf suppositories and enemas. However some parents will want even more flexibility in applying enemas which brings us to enema bags. Their use is cheaper and the enema solutions can be tailored more to your child needs for better and gentler clean outs.'
Thank you for that. It shows why the consultant wants to do manual evacuation. I won’t buy a home enema kit because he wants the support of a Peristeen nurse to help him get used to using it. I talked it over with him. I think he’s being really sensible. I’m going to focus on trying to see a different consultant in another hospital. His pain has increased now I’ve upped the meds and increased the soiling. Stuck between a rock and hard place!
Hi, this post may be dead and forgotten about but I've read the thread and my daughter who is now 4 is going through something similar, please tell me there's a light at the end of the tunnel and if there was a reason for the Constant constipation we've had suppositories, movicol, senna, enemas and were going in for her first klean prep tomorrow loosing hope of us finding a solution after 4 years of this
I would advise asking about trans anal irrigation. It’s what has finally helped my son after years of hospital. Does your daughter have a good gastroenterologist? Is there a paediatric surgeon on the team? I would ask to speak to the paediatric surgeon and find out if they specialise in the bowel. It’s as much about who you see as much as anything
I'm in the UK and don't have much choice about who I see, it's whoever can see her, she's had bad constipation since birth but calmed down a lot for 2 years, when she came off her reflux baby milk is when all her issues started and we've literally had no Incling as to what is causing it, although we have a strong family history of gastro issues such as diverticulitis ibs etc, they keep telling me it's dietary but I've stopped everything, wheat, gluten, dairy and all at once egg included and she is still constipated, I can only get referred for a gastro surgeon if they feel it is necersarry, and it is not apparently at the moment, and nothing seems to improve it she was supposed to have klean prep 7 months ago but they just gave her an enema and sent us home and its took me 7 months to convince them to do a klean prep 😭 really at my whits end and they don't seem to care what it's like to live with a child who's in constant pain
You can send me a private msg if you want and we can speak on the phone
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