Help with chronic constipation

[Leoni5990]

hey everyone, could anyone possibly give me some advice. I have a 4year old daughter who has had cronic constipation since around 6 months old. She is under a consultant but due to the current situation he cannot see her, he has pushed back 3 appointments now. She is constantly in pain with her tummy, still in nappies due to overflow and when its time to go she is constantly straining which looks like she has an anal prolapse. she is on movicol & lactose daily and nothing is helping. She is going to the toilet around once every 2 weeks and its not good enough... i have explained to GP, health visitor and consultants secretary and I cannot get nowhere with anyone. Her diet is fine plenty of fruit,veg and fibre...I've started her a food diary too so they can see what she is eating. Has anyone else had this problem, its like none of them believe me.

[Alicass]

I know where you're coming from and I feel your frustration. The NHS doesn't seem to offer much support for child constipation. My son was under a Paediatrician for 2.5 years and we discharged him as the Paediatrician was completely useless.

My son is 9 in September and he had chronic constipation for a long time. To cut a long story short - 6 years later and we're on our way to sorting him out.

He had chronic constipation for a good few years and we were told in February 2019 that he had a distended bowel! Basically his bowel was stretched out of shape due to the amount of poo it held for such a long time. It will take 2 years to go back to 'normal' and that's 2 years of no constipation!!

Our 2 years is up on Boxing Day this year. After several disimpactions with Movicol and a good toilet routine he's finally having a daily poo and hardly has any accidents now.

Your child might not have the sensation of going to the toilet due to the chronic constipation. We've been where you are now and it's very frustrating, stressful and emotional. You know your daughter and you need to go with your gut instinct. I've heard so many stories of the health service not doing anything about the constipation. I don't think they know enough about it and how it affects a family.

I was sent on a potty training course at first (this was my second child), a GP was rude to me, the Paediatrician was rubbish and we felt very alone.

It's a long term health condition but it can be sorted and we're proof of that. It makes me so mad to hear stories like yours where you are ignored. Xx

[Leoni5990 in reply to Alicass]

Thankyou, that puts my mind at ease to know something good can happen. You absolutely right there is no support from the NHS at all. I've taken her to the local assessment unit on a few occasions where she hasn't been able to go and even then the doctors don't know a thing about it and just say to up her movicol, at one stage she was on 5 movicol a day. There should be some more support with the amount of children I have now heard it happens to. Its so hard for them and the families. Most of the time she doesn't know when she has leaked in her nappy the only time she does know is if it is pushable... the consultant has mentioned to me about the distended bowel but havent seen him since October when he told us. Im hoping that when the care plan at primary school comes into place in September someome may actually listen. Im glad you are finally getting somewhere with your child after all the hard years of dealing with it. Best of luck to you all xx

[Robinia in reply to Leoni5990]

Usually the issue is to do a full disimpaction and then find the right maintenance dose. That is actually much harder than it sounds. Kids who are very constipated often need multiple disimpactions. Watch the poo nurse video (google poo nurses). I’m not sure what the maximum movicol dose is for the age of your child. Whatever it is you need to get up to it gradually and stay on it until the poo becomes like brown rusty water. Might take ages. And then gradually reduce until you find the right maintenance dose. Stimulant alongside movicol can really help (like Senna). And be prepared to do more disimpactions. My son’s maintenance dose has now gradually reduced from 12 sachets to 8 sachets a day (age 11) he’s also on Senna and bisocodyl.

Don’t get me started on the understanding of constipation in the NHS!! But I have also found knowledgeable helpful people- usually specialist bowel nurses in my experience. The most useful thing I’ve been ever told is “it’s about getting clear and staying clear” ie no soiling/straining

[dharshana in reply to Alicass]

what medicine you him to make him poop daily now?

[Alicass in reply to dharshana]

He's still on Movicol (1 sachet a day) and we're still sitting him on the toilet every day too.

[dharshana in reply to Alicass]

good to hear. it gives hope . thanks

[Spot111]

Hi there, I totally agree with the advice that has been given. My son who is now 5 has the exact same problem and what helped for him was finally talking to ERIC on the phone. One of the main problems that I found is that although my son had a paediatric consultant he wasn't actually a bowel specialist so couldn't fully understand the problem. My son had constant mess in his pull ups which seemed to me to be overflow and not actually poo. What worked for him was to do the disempaction which was up to 12 sachets (we didn't leave the house for a week) where it was practically running down his legs and then time spent finsinfa maintenance dose. Also the introduction of a toilet time bag helped greatly. So 20-30 mins after every meal and before bed he had to sit on the toilet 5 mins and he got access to his toilet time bag. This bag was only for him and stayed in the bathroom. In the bag there was things like a whistle, balloon and bubbles, things that naturally help the bowel open through blowing and then a book, scribble pad, anything to keep him entertained as 5 mins can seem like a long time. I also bought his very own timer that he set which he loved. Didn't matter if he didn't poo but got his body used to the routine. We also had one od these bags at nursery and also at my parent's house (nothing pricey btw). My advice is also to really stick with it and not to get lax. I'd love to not have to accompany him to the toilet all the time but we now have a poo every day at most or every other day and the overflow soiling stopped. I do have to monitor it all the time and up and down the dose of movicol but we are so much further forward through doing these steps than 3 years of attending the hospital. Hope some of this helps.

[Manxiegirl17]

There is help available. My daughter has chronic constipation, she’s 10 now but we began this when she was 3. We were told she’s immature, Young, lots going on, she’ll grow out of it. Eventually I found a good gp, they referred us to paediatrician, they did very little, every apt was the same so my husband told him we’d no longer attend and please discharge us as we were making zero progress. At that point the consultant said they weren’t an expert in constipation but they had a continence clinic that was and referred us there! We’ve been under the fantastic nurses ever since! Eric supported us in the early days to give me the confidence to keep pushing for the right care! Also supported me emotionally to realise we were right and my daughter has a problem. She has a slow transit bowel, but the years of chronic constipation meant it became distended and she lost muscle feeling.

It’s also important to get it recognised medically for school. Luckily my daughter’s school have been great, her nurse did a school visit too explain the condition and the severity of it. There’s such little understanding about it! Don’t give up! Find a good gp, and go from there! X

[RBsMama]

Hi, i have irritable bowel syndrome. (Has she been checked) Have you seen a dietitian? Does she struggle with wind?

I was severe constipated since a young child. Some foods have ‘un solvable’ fibre... what I thought was helping wasn’t at all, bunging me up. It’s VERY well managed after food diary long term.... so as much you both feel is hell there is hope.

In past i even used like vasaline around (and slightly inside) my bum. Pressure around the area (may feel the poo inside) for pieces to detach.

Worth making sure she does not have piles (can be very high and not visable) or fixtures (cuts around bum hole from pushing) they can be very painful. Bleeding can look very scary and alot when in the toilet- so be sure it isn’t actually IN the poo.

The irritable bowels society, charities etc can give fantastic advise! Also water water water! Even like ice pops and lollys... the lactose and stool softeners work by absorbing water so if there isn’t enough water they cant work.

My heart breaks for her... iv been in her shoes my hold life. Even stopping drinking fizzy drinks helped me because wind used to ‘block’ my poo and hard sharp pain.

Oh I remember as a child mum ALWAYS gave me weetabix for breakfast.

Check if there are children suppositories.... as an adult i need something ‘both ends’ to get rid of a severe blockage. Sending all my sympathy

[Leoni5990 in reply to RBsMama]

Hello, its very good to hear your story. She hasn't been checked for anything due to the consultant not seeing her neither the doctors. I have requested her medical records so that I can see whats been said on their side. She has a lot of wind all the time. Up until she was around 3 she never ever had wind from that direction. Burps would be all the time but no bottom gas. Which is something I explained to all the health professionals. I've been to A&E with her a number of times due to her not being able to go for weeks, and they have gave her enema and things like that to make her go but doctors nor consultant will prescribe them for her... dont know why when they help her so much sometimes I manged to get some from the out of hours doctor at 1 point but they were used within a couple of weeks. She eats brilliant and I've even tried to cut out different things to see if she has an intolerance to things e.g dairy swapped cows milk for almond milk and cut all dairy out of her diet. That didn't work. I was told back in April her bowel has stretched but not been seen since I will have to have a look at irritable bowel. Never thought she could possibly have it if im honest.

Thankyou for your reply 😀

[RBsMama]

Well im pleased i may have come up with a suggestion for her 😀

Wind and constipation FOR ME... fizzy drinks,baked beans,and parley is terrible. In fact like you said, she has lots fruit and veg. My bowels cant handle 5 a day... caused too much wind. Too muchbread really ‘bungs me up’ wholemeal (not seeded or brown) is best but still only max 2 slices a day. Wholemeal pasta rather than white... doesn’t cause pain but constipation.

Im hoping you may be able to get a dieticians appointment for her easier and imagine not much different a call compared to face to face

Not sure if this is any help. In the past (for something else) i made an appointment with a private GP (cost me about £70) i then paid £10 for recommendations in a letter). This helped because nhs Doctor did not want to override another gps recommendations- OR explain why they didn’t think of it. For me was worth every penny (NHS have budgets etc).

Both of you will be in my mind so would be nice hear how it goes from you 😀🤞. Xx