Update to Movicol, impaction, pain etc post

[CM0301]

So, to update.. we have spent of today (Easter Sunday) at A&E after severe pains over the last couple of days. Turns out she is still impacted. The consultant that told us 1 sachet a day for 4 days would be sufficient was talking complete nonsense and has caused us to effectively waste nearly 3 weeks, caused additional pain and distress. And now we have to start the process all over again.. Upset doesn't begin to cover it.

[Turquoise3]

Hello, thank you for posting this message. We've been told the wrong dose of laxative too. It's very frustrating. Also my child has had tummy pain and has now been referred to a paediatrician. On Easter Sunday how did the hospital diagnose that your child was still impacted?

Many thanks

[CM0301 in reply to Turquoise3]

They just felt her stomach -which is the same as they did when they said she was fine and just to take the 1 sachet! They did also look at the original scans she had done nearly a month ago. .although I can't see how accurate they would be now. I asked if they would rescan but they said only if problems continue until our outpatients appointment (which is up to 6 weeks away!) The pain is ridiculous..

[Turquoise3 in reply to CM0301]

Thank you. I'm so sorry your child is in so much pain. Good to know that more can be done than just feeling the tummy.All the very best.

[Alicass]

If she's still impacted then I would disimpact fully. Then you can be sure she's poo free. Find her maintenance dose and put a toilet plan in place.

I'm sorry to say this but constipation isn't really understood by the professionals. There's hardly any support out there for families like us.

We've been on our journey since 2014 and we now have a bright light at the end of the tunnel. Our Paediatrician was completely useless and kept my son on Senekot for 2.5 years!! All he did at appointments was feel his tummy and ask a few questions. We started using Movicol in December 2018 and have never looked back. I discharged my son from the Paediatrician so we've been on our own for the last couple of years but I don't regret that decision at all.

Constipation is a long term condition depending on how constipated the child is. I totally know where you're coming from and feel your pain. If she's impacted she needs to be cleared out. Xxx

[CM0301 in reply to Alicass]

Thank you. Any suggestions re coping with the pain she is experiencing? It's making taking the Movicol really tricky already.. she says Calpol doesn't help or even makes it worse. I am going to try to get Buscopan syrup when pharmacy opens today as hospital said that might help.I feel dreadful as I had no idea she was constipated to begin with as she was still going to the toilet every day so she must have been suffering for ages and I potentially situation made worse by not knowing and acting sooner...

[Pixie102 in reply to CM0301]

So sorry to hear about the confusion and lack of consistent help. We’ve had so much of the same along our journey - sometimes you just feel at your wits end but you will have little breakthroughs and start to figure out what works for you. Each time our DS has a setback we feel guilty for not having noticed those small signs and acting sooner but really it’s about being prepared to try out alternatives- so good on you for exploring these 👍

We are just coming out of an impaction over this Easter- we have to go the whole movicol routine - gradually increase until the 12 sachets yesterday, hidden in hot chocolate. Poor chap he’s been up in the night for bathroom visits. I can’t believe how much poo was actually in there.

The movicol really does work - we have the chocolate flavoured one and the tummy aches reduced about three days into the impaction regime. Even though it’s been a bit of a trial, DS is less upset now as the uncontrollable soiling has ceased.

We also use an inulin spread called TROO that tastes like chocolate - got if off Amazon - it’s expensive but DS really does love it plus chia or flaxseed in his oatmeal. For the tummy aches we use arnica gel and a bit of a massage on his back and tummy plus a couple of those self heating patches which we stick on a old t shirt a bit higher than his tummy button

[CM0301 in reply to Pixie102]

Thanks for your reply - I will have a look for the things you mention..

[Frustratedmum1 in reply to CM0301]

Please dont be hard on yourself. Our son was the same. It took the school nurse to work out what was going on. For my son he enjoyed deep water baths. When the pain is really bad he sits on my knee with his back to my chest. He puts my hand around his abdomen and asks me to place pressure on to his abdomen. This seems to give him relief and you can sometimes feel things moving or the bubbles. Tyre swings can help if they lie on the swing. Swimming. Gym ball allows them to put pressure on there stomachs.We did get told calpol doesnt help it is more for the parents need.

Depending on the age of your child i would do a discompaction program. This would allow you to get your child unblocked and identify what the maintenance dose should be. As a guide it is approximatly half the dose what it takes to discompact your child.

We have used a Chiropractor and we went to a function medicince practitioner who looks at their body more holistic. With our child we found out his microbome was all the bad bacteria. They take the history of your child right from birth. I wish you all the best. Just follow yiur gut because you have to fight the system. Dont be asked to ask for a referal to a consultant. Sorry about the essay.

[CM0301 in reply to Frustratedmum1]

Thank you for taking the time to reply - it does help to not feel so alone in this situation.

[Frustratedmum1 in reply to CM0301]

You are not alone. I really appreciated this forum when things were really bad for us. It was nice to talk to people who understand and share the same experiences.

[Alicass in reply to CM0301]

I haven't tried a tens machine but that could help. I've seen people mention it in different forums. What about having a chat with the Pharmacist? They maybe able to suggest something to help. Our a hot water bottle on her tummy may ease the pain a little.

Don't feel guilty. We had the same. We tried for 18 months to get our son dry and then headed to the GP. After a while we all thought he was poo free but an X ray showed there was a lot of poo deep in his pelvis which couldn't be felt from outside. My heart broke and I couldn't believe it. I felt incredibly angry towards the Paediatrician as all he did was feel his tummy.

Could you take her to the GP before her OPD appointment if she's in a lot of pain? Xx

[CM0301 in reply to Alicass]

Thanks.. yes, I think I will try GP again.. and maybe pharmacy. She's already had a rather explosive loose bowel movement and she's only taken the first 2 doses..

It's the pain that is worrying me the most.. she can't tolerate a hot water bottle pressing on her tummy when it's really painful.

I just keep worrying something else is going on but they are all fixated on the bowel impaction.. but then I guess I don't necessarily understand how bad that can feel.

[14crosstitch14 in reply to Alicass]

I wish i could just do the impaction too. My s daughter is epileptic and still waiting on her mother to get her movicol.

[accessjunky in reply to 14crosstitch14]

Have you.noticed any change in Seizure frequency caused by the pain associated with impaction?

[SCPK]

Instead of waiting for the movicol to disimpact, would you consider a suppository? This worked for us l, via our GP, when our toddler was in pain, and along with limited fluid intake it was very difficult to implement the amount of movicol needed for removing the blockage. It really was a turning point for us.

[CM0301 in reply to SCPK]

I would consider anything! Did you have to continue with the Movicol or did the suppository do the job (if you know what I mean) One of the nurses or maybe even a healthcare assistant mentioned one when when she was an in patient last month but non of the doctors seemed keen..

[SCPK in reply to CM0301]

We couldn't figure out why it wasn't suggested sooner, we think it may be that doctors just aren't that comfortable with the idea? And i don't know why it's not considered in the NICE guidelines. I actually want to look into that further as I hear so many stories of people having difficulty managing the high amount of movicol needed for disimpaction and I think alternatives need to be more readily considered.Yes we kept up with movicol and lactulose but didnt need to do the disimpaction regime, so we were just figuring out the maintainance dose. That was a year ago now when she was 2 and we still have to give some laxatives as she is scared to go and needs her stool to be soft to feel able to go.

[CM0301]

Is there any benefit to trying to speed the regime up or do you have to follow 2,2,4,4,6,6,8,8,10,10,12,12?

[14crosstitch14]

You should report them. Its not good when you can not get the help you need.

[14crosstitch14]

Plenty water, exercise make the exercise squats fun. My husband was taught how to do bowel masage when s daughter was a baby she was born 6 week early. He still dose that on the odd occasion