Success with chronic constipation finally?!

[Robinia]

Hiya, just wanted to post my recent experience for anyone currently struggling with their child’s chronic constipation.

My son is 11 and has been severely constipated and unable to poo on the loo and constantly soiling for 2.5/3 years. He’s had problems with it since age 2.5 but very very bad last few years.

Finally think we may have started to come good (no lack of trying). After a very full on messy disimpaction at Easter holiday (having done one at Feb half term as well and kept on 6 sachets in the meantime) - actually think he might be fully cleared out now- a huge amount of gritty stuff came out, looked like sand and detritus from the beach! (Sorry for the detail!)

The key for us I think is the maintenance dose as we’ve never before found one that works consistently. This is currently daily- 10 sachets movicol (just come down from being on 12 for 2/3 weeks), 15mgs Senna (2 tablets), 1 bisocodyl 5mg tablet and bowel irrigation with catheter balloon system 500mls water daily.

This is obvs under the care of a specialist at a hospital although I have actually come up with the maintenance dose myself (years of bitter experience).

I guess the reason I wanted to post was to say don’t give up- the basic idea of a full clear out (needs to be completely full) followed by a rigorous maintenance dose (which may be much higher than you at first think is needed) can work- my son now pooing on the toilet every day more than once. Still chronic soiling but I know that will improve as we taper down the movicol very gradually.

Obvs it’s early days but I’m hoping the manual evacuation he is on a waiting list for will now no longer be needed!

If your child has very severe chronic constipation and particularly if they are older I highly recommend seeking an appointment with a paediatric consultant who specialises in the bowel so you can discuss whether bowel irrigation would help. It’s taken us a year to get it working well but if he’s now sorted before high school the hard work will have been worth it.

Hope this is helpful to someone out there as I know how very hard this is to cope with for the poor kids and the poor parents 🤗

[Lollyshrekmum]

Thank you for sharing its good to hear things are improving for you all. It is hard when the issue goes on for years my son is also 11 and has struggled for years too getting the maintenance dose is key we are still trying to find it. I feel hope from your post.

Thank you and best wishes for continued success

[Misty10 in reply to Lollyshrekmum]

Hi what is the maintenance dose I thought 2 sachets but still soiling and its light in colour so no old poo .

[Laundrymaid]

It’s always good to hear from you Robinia but even better when it’s about progress!!

Keep up the good work.

The Laundrymaid xx

[Starryeyes2000]

Hi Robinia!

I know you posted this a while ago but just wanted to ask how your son adapted to having bowel washouts? We’re about to go down that route with our daughter who’s a similar age. She’s on 12 movicol a day, 10ml of Senna, about to start sodium picosulphate. She has the urge to go regularly but is unable to push anything out and the hospital think irrigation is the way forward. I was just hoping for some advice and also wondering if this process can improve natural bowel movements as well? Thank you!

[Robinia in reply to Starryeyes2000]

That’s interesting. Sounds very similar to my son. Have they said which system yet? My son is using balloon irrigation. He became blocked again recently so is currently on. 12 sachets movicol, 3 Senna tablets, 1 bisocodyl tablet and irrigating with 5/600mls of water a day via catheter. Happy days! I’m a huge fan of the irrigation. He struggled with it because he was not relaxing his muscles and pushing when he needed to. I get him to blow on a harmonica as hard as he can which really helps with this. Do please let me know how she gets on x

[Starryeyes2000]

Gosh, these poor kids. My daughter was unwell year or so ago and ever since has experienced bowel and bladder problems. She catheterises daily and I think we’ll be using the qufora cone system for irrigation. I’ll let you know how we get on once we’ve started!

[Nanoiu]

Hi Robinia. I learn more from you than from the doctors and we’re under the care of a general pediatrician and a pediatric surgeon! My boy has recently been approved to use Peristeen (bowel irrigation system with balloon and catheter) in Auckland. First apparently. We began using it about a week ago daily. Can only get 200ml in before he gets the urge to go to the toilet. We are still on 2 sachets and 2 Sennokot daily dosage which I find works for my boy (8 years old, 29kg, 4 years soiling). We replaced daily Fleet enema (half a bottle) with the bowel washout. Not seeing any changes yet. His underwear still has smears.Question: The Peristeen rep recommends using water only. I’ve read in the Soiling Solutions Clean Kid manual that one should NEVER use water only but always to dilute 1.5tsp salt to 1L water. Community Nurse and GP are not sure about it. What do you think? Are you adding anything to the water?

Also, what do you mean one needs time to get going with the irrigation system? What’s been your experience with it?

Does your son get the urge to go right after?? Is the 500ml a limit based on his weight, based on his urge to go, or something else?

[Robinia in reply to Nanoiu]

Some centres advise saline, some advise plain water. We used to use saline but now use plain water. It makes money difference tbh.

[Nanoiu]

Going through your older posts. Is there a difference between a bowel washout and irrigation system ? I though the irrigation system gives a bowel washout each time one uses it?

[Robinia in reply to Nanoiu]

Yes the bowel washouts he used to have were different. A more passive process. The irrigation is more active. My son blows a harmonica while on the loo after using the catheter. Really helps. I coach him to push/relax/blow. Takes about 10minutes to make sure everything is out including wind.

[Nanoiu]

In a previous post you wrote that your son was full of soft poo which didn’t show on xray but that was cleared using qufora. How do you know that? Thank you.

[Robinia in reply to Nanoiu]

Btw I’m happy to connect via WhatsApp if it helps xx

[Robinia]

I know he’s clear when the soiling stops. Also his behaviour and mood are completely different. It’s like a switch is flicked and he’s happy again!

[Nanoiu]

Hi Robinia. It’s been a while. Wondering how is your son doing? Have things kept improving for you?We’ve been using Peristeen for about 4 months now. Initially with water, then at the paediatric surgeon’s advice switched to normal saline and when that didn’t seem to work, switched to Movicol, that is 500ml Movicol (here goes by the name of Molaxole) administered rectally. That in addition to 2 Sennakot tablets and 2 Movicol sacthets given orally before bedtime. (We trialled cutting out oral Movicol and little poo arrived at the rectum.) Then an xray (it’s been a long time since my son had one) showed impaction in the ascending colon. Not sure if it was because we stopped the oral Movicol or maybe it’s been building up there for a while. So my son was admitted in hospital for Kleenprep (disimpaction via nasogastric tube). This the second time, he’s had it before a couple of years ago. We were there Friday- Monday. They were quick to discharge us.

And now I see no improvement whatsoever in his bowel movements, he’s still soiling, it’s very disappointing. We’ve been out of hospital for a week.

I think he may still be impacted, we’ve never seen detritus and such come out, we’ve always done quick disimpactions. 2-3 weeks of heavy dose Movicol may do it, but does that mean the kid can’t leave the house?

It’s a real struggle for us to do a disimpaction because my boy is extremely active, he’s pretty much always out, doing sports (when not in school).

I will take you up on your offer to have a chat via whatsup.

I live in Auckland, NZ. What time zone are you on?

[Nanoiu]

And what’s bisacodyl? We use a stool softener (movicol) and a laxative/stimulant (senna), what is this third medication your son’s using?

[Robinia in reply to Nanoiu]

Let’s chat on WhatsApp. Send me a PM and I will send you my mobile number

[Misty10]

Hi thank-you for sharing does your son feel the need to go and does his brain let him go on toilet .we are just waiting for my daughter to tell her brain it's OK to go to the toilet as ATM it's in pull ups no pooing on the toilet the first were she did it but now it's all stop again.she can be very controlling attitude with it is this normal .