After a year a still my 10 year old not right

[Pink12345678]

Hi there my daughter back in April last year became unwell and the short of it was we ended up in hospital as she was completely compacted with pooh! The doctors tried everything and eventually after me not giving up as I knew she was wasn’t right in July last year she had the most horrific procedure of a tube up her nose into tummy the pumped full of liquid for 3 days which hasn’t worked! We were discharged on basis it had but after me paying privately for a MRI 😡as the hospital wouldn’t preform another it showed how impacted my daughter still was! That was back in October and we are now awaiting for her to go in and see what’s going on inside but this time she will be asleep! She’s just started her period and I’ve noticed she tends to pooh more?? But one thing I’ve slways noticed when she goes or before she looks so pale and then goes all sweaty and feels unwell after ? We’ve had blood in pooh but samples all came back ok and she’s currently on Senna, pico and movicol but I just feel non of this works and she’s Constantly in pain but after a year now she’s learnt to live with it! We are under a gastroenterologist now but unfortunately with Covid 19 things have been delayed. The last doctor we were under handed me antidepressants!!! Got my 10 year old??! Saying it was anxiety in the end yet I know my daughter which was why I ended up having to pay privately I’m glad I did as it’s proved there is a problem, but WHY? Why does she still get bunged up we can actually feel her pooh stuck just by touching parts of her tummy or even as high as her rib cage , she eats but is always hungry after? Is there anyone out here that has been through something like this or going through this or someone that can help! I just want my daughter back running around and enjoying her life she missed 5 months of school last year due to all of this

[Robinia]

When they put her to sleep, are they doing a manual evacuation? Check exactly what they are planning to do. My son had an examination under anaesthetic and a clear out under anaesthetic and a biopsy to check for Hirschprungs.

It sounds as though she needs a full clear out/disimpaction.

In my experience, the key bit after the clear out is the maintenance dose.

For example my son has had countless clear outs. They’ve never lasted until the most recent one. This time I upped his meds higher than ever before for the maintenance dose- 12 sachets of movicol, 3 Senna tablets and 1 bisocodyl tablet daily. He’s now managed to drop down to 10 sachets of movicol daily with the other meds staying the same. That reduction has been very gradual. Basically he’s cured of soiling now after 3 years of more hospital visits than I can count and constant severe pain.

I think you should phone the Eric helpine and discuss the care your daughter is receiving. They will advise you on questions to ask the consultant and also how intractable constipation can be at age 10 (very).

[Pink12345678 in reply to Robinia]

Hi Robinia thank u for your reply. My daughter has already had the test for Hirsprungs and the clearout back in July last year with the tube and liquid she’s now awaiting a procedure where they are going in with a camera she will be asleep , what we can’t understand is why she keeps getting so packed ? She’s bloated to and her tummy is always so bloated we’ve tried diet changes too and it’s just something isn’t right I mentioned a twisted bowel to them but they said no.

[Robinia in reply to Pink12345678]

My son’s pain was horrendous- awful bloating as well. It was and still is trapped wind in his case. He’s had the klean prep multiple times, in hospital and at home. They couldn’t get the NG tube down him despite sedating him (tried 4 times) so he’s had to drink it every time.

I think a camera might be a good thing as then they can have a proper look at what’s going on.

Has she been tested for coeliac?

[Pink12345678 in reply to Robinia]

Hi yes last year they tested her for all this last year. I was told in her colonoscopy that she still had pooh stuck 😭 which I was surprised about as she couldn’t eat for 2 days and took kleen prep which did work ( I thought) so why has she still got pooh stuck I keep asking the same thing I don’t understand why aftercall medication she still has pooh stuck even in October it showed impacted in her bowel in the August last year she had the horrific NG tube which was awful to watch and my daughter has been so brave throughout I just want answers