Yet another update

[CM0301]

I've lost track of what I've posted.. but we're still in hospital. Mixed opinions re impaction, but agreement at least around some level of constipation so on low ish level of Movicol/Laxido.

Numerous tests, still in pain but now also with an absolute fear of eating. They are leaning more towards IBS, which I now need to learn more about- although my main concern is the psychological aspects around eating which fill me with terror..

Thanks for all your wisdom to date.

[Teddy500]

Hi, I don't know lots about IBS but when it was something I was checking out for my son, I found something called the Low FODMAP diet which was all about foods which were found to be better for anyone with IBS, you may have found this already but I thought I'd mention it just in case, best wishes 🦋

[Robinia]

Sounds like a load of baloney to me. My sons constipation was rarely understood or recognised in hospital. Is there soiling? What colour and what consistency?

[Starryeyes2000]

How are you getting on? Are you closer to understanding what is causing your daughter so much pain? Xx

[CM0301 in reply to Starryeyes2000]

They're talking more about functional pain, like IBS now- although acknowledged there was/is an issue with constipation and also gastritis. The more concerning issue now is this fear of food/eating and stress/anxiety linked to that which they believe makes the pain worse. Need some MH support but seems severely lacking..

[Starryeyes2000]

Your poor daughter 😔 and you too. Hopefully if they are closer to a diagnosis you’ll be able to get the support you need to reduce the triggers.

Mental health support can be hard to access but def keep trying. It took us 6 months to get CAMHS support and it was limited but every case is unique. If you can access private health care there are often options there and if you are employed and your employer has an employee assistance programme, they too can be helpful in accessing support for you. Not in the same aisle but we also saw an Osteopath for our daughter. She found those sessions calming and they did a lot of work on her consciously understanding her breathing and how tense her body was. Might be worth exploring. Finally, my daughter also spoke to NSPCC a couple of times during her very low stage and they were really supportive. It was giving her an option to talk to someone outside the family that she needed.

It sounds like you are doing all you can for your daughter. I hope you are ok and I hope her pain eases and you can both get some respite. Take care xxx