Private treatment for chronic constipation/soiling

[triciaroo]

Just wondering if anyone has explored private treatment for soiling and suspected chronic constipation? We have an appt on 20th December which I'm trying to push forward, but I've booked a private consultant for 25th of this month to go to if we don't have any luck.

Our son has been on Movicol for almost a year and has a soft bowel movement daily (4 on the Bristol chart usually), but slips multiple times a day. The soiling is "classic" overflow (really dark, gritty, sticky, foul-smelling, impossible to clean) and this seems to be worsening.

The initial consultation with a private paediatric gastroenterologist is going to be £185, but we have no idea re cost of diagnostics and treatments. I know these will vary, but wondered if anyone had any experience so we could at least get an idea?

Thanks in advance

[Chocolate-chicken]

I will be following with interest. We looked into it, but our continence nurse talked us out of it, saying that although it would speed up diagnosis, it wouldn't actually speed up our daughters treatment.... We're still keeping an open mind though. Our paediatrician apt is at the end of September so I'll be raising the issue again then..... Good luck!!

[triciaroo in reply to Chocolate-chicken]

Thats interesting actually...The clinic I've spoken with have said we could potentially have diagnostics straight away, and treatment started within a couple of weeks so that's what I'm hoping for! I guess it very much depends on diagnosis though! If we can get the NHS appt brought forward, we might be able to wait and cancel the private one, but things have worsened so really can't deal with the thought of him waiting almost another four months! Unfortunately, I've had countless unanswered calls and left several unanswered messages re the appt date so far...

I hope your daughter gets the help she needs soon x

[Chocolate-chicken in reply to triciaroo]

I feel your pain. I think every area is different. Where we are, the continence nurses work with the paediatrician, so even though we haven't had the official appointment (long story, but we were referred wrongly by our drs so came down a funny route) our daughter is being treated for chronic constipation, but we have no official diagnosis... I have significant doubts that constipation is the whole problem (constant wetting and soiling) and so I just wanted to have x-rays/scans/tests etc ANYTHING to get to the route of/confirm the problem(s) asap .. but like I said, I was encouraged to wait for now as apparently even if she had a diagnosis of chronic constipation, the treatment would be the same as what she is getting now..... Urrrgggggghhh.... it took 9 months to get a referral to the continence nurse, and it's been another 9 months to see the paediatrician...... I am losing it...... Xx

[SKY01]

We went to see a pediatric gastro privately. It was great in that it got us an x ray and transit test immediately, which which helpful in confirming what we suspected, but I needed confirmation for my own peace of mind that we were dealing with the right problem. Then it was just a follow up and hr advised disimpaction etc. Didn't investige anything further at this stage as we are seeing where we get to with disimpaction and maintenance xx

[SKY01 in reply to SKY01]

Ps x ray was approx £100

[jane-anna]

We went private for the initial consultation which was £160 I think. The consultant didn’t advise x ray as said he could clearly feel my daughter was impacted so no point in exposing her to radiation. Then we did disimpaction. When we had probs with maintenance he referred us to NHS consultant for ongoing care so it was worth it as it just meant things got started earlier and we knew what was going on sooner. Once in the system with NHS we now have regular appointments and can phone the nurses anytime so don’t feel any need to be private now.

[triciaroo]

Thank you so much everyone. I'm just sorry so many are going through this. It's impossible to explain to someone without first-hand experience, just how bloody awful it is for the whole family

Will update on our experience as and when I can, to hopefully give more info to others. I have a suspicion that my little boy's problem might need some input from a behavioural psychologist too, but my head is just swimming with thoughts these days... Just desperately need some help.

[snowgirl_69 in reply to triciaroo]

Totally feel your pain x

[HollyGriffo]

Also following with interest. Been on the NHS wheel for years. Would really like to know the cause of my daughters constipation and then be able to get her assistance in school. Giving tje the NHS one more week then we are going to look at private options. Whereabouts are you if you don't mind me asking?

[triciaroo in reply to HollyGriffo]

Holly, we are in Staffordshire (Lichfield, to be more exact). I've contacted BMI Healthcare and we have booked a consultation with their paediatric gastroenterologist for 25th. They did offer me the 3rd, but that's his first session at school and I'm not convinced I could get the referral letter from our GP that quickly!

Son starts school this week coming and we'd been managing ok(ish) for the last few months, but it's worsened over the last few weeks. Typically, it's been over the summer holidays so I've not been able to speak with the school. Partner and I both work with my time split between working at home and in London so I've got to get together with the school quickly and work out how best to manage things in school hours.

Do your school support your daughter well? I was reading that guidelines say school a must off we help with toilet issues as they are classed as medical conditions but that many don't :(.

[HollyGriffo in reply to triciaroo]

Hi, it has taken years to get support from school. I often get called in to clean her up as they 'dont have the staff' to do it. Once she was sitting in a toilet cubicle heavily soiled for 30mins until I came to clean her up as she was too young to cope herself. Last 2yrs theres been a lovely TA who has been willing to clean her up (sometimes against Heads and union advice). This year I don't know what help if any she will have. Hopefully your child will have a different experience. I have booked a private consultation with Dr Marcus Auth, in Chester this Thursday. Will keep you updated!

[triciaroo in reply to HollyGriffo]

Just noticed all the typos in my last message... Well done for deciphering!

Oh gosh... The poor thing. I really hope you get some good support again, and it doesn't go back to how it was before. It seems so cruel that they have to go through something like this, and I've been heartbroken to read how hard people have had to fight just to get their kids to be offered some help and dignity at school.

Keeping everything crossed for your appt on Thurs! I've somehow managed to get an appt with the NHS next week (!!) after a meltdown on the phone today. Not cancelling my private one just yet though as I'm suspicious about how they suddenly managed to find this appt. Wouldn't be surprised if it's booked incorrectly or something... :/ xx

[HollyGriffo in reply to triciaroo]

Thats great! I've found a good old fashioned meltdown has occasionally got a speeder response. Hope all goes OK and you are OK too. Keep us posted😀

[lyns08]

Could you possibly push the NHS a bit more to give you a transit study xray? I wrote a letter to both my gp and our paediatrician begging for help as it was affecting our family so much with what we could do. They weren't happy that I had written but within a few days I had an appointment come through for the xray which got done a week later. I was just about to pay privately for it so very relieved we ended up getting it. Perhaps putting everything in writing forces them to deal with the issues quicker?

[triciaroo in reply to lyns08]

Hi Lyns :). Yes, I'm pushing to have his NHS appt brought forward, but the surgery are not being very communicative... If I still can't get an answer from someone tomorrow, I'm going to book another Dr's appt on Tuesday and just tell them that it's getting too much for us to deal with now.

How's your little one now?

[lyns08 in reply to triciaroo]

He is doing ok thanks, after they saw the xray results they gave him an enema in hospital and then we had to do a 7 day disimpaction at home. We have seen a big improvement although I think it is going to be something we have to manage for a long time. It took us a year of going to doctors to get to this stage though which has been so frustrating as all the treatment and xray was so straightforward in the end. Its a shame a lot of gps just don't recognise constipation and how to treat it properly.

I hope everything starts progressing for you soon x

[triciaroo in reply to lyns08]

So glad to hear things have improved! I think my biggest fear right now is them saying they can't find what's causing it... Things will then become a whole lot more complicated! By some miracle, managed to get our NHS appt moved from December to next week though!! X

[lyns08 in reply to triciaroo]

That's great news!! Hopefully you can now get more tests to determine what it could be, all the best x