BOWEL DISEASE

[becks1972]

I am a Mother of 2 children, my youngest daughter has Partial Villous Atrophy Active Crypt Hyperplasia and Eosinophil Infiltrate both in the IIeum and throughout her Colon.
This has taken us 10 years to get this result having been in and out of hospital, finally in March this year we got a result. This effects her tummy with cramps, wind servere Constipation tiredness and generally feeling unwell. Having had lots of time off and being on Elemental 028 for 9 weeks we are now back on it as her tummy cant cope with all the food. Along with this in the last 6 weeks her joints are playing up big time, she is now only at school for half days as she cant cope with this. She was on Tramadol then her local Consultant put her on Codeine why? this effects the tummy big time. Is there anyone out there with the same condition and having problems?

Didn't want this to go unanswered.
Not the same problems - no where near as severe, but I do know about waiting years and years for any kind of answers. All 3 of my DS have been 'temporarily' dx with IBS. It's just raft after raft of different tests to get to the 'real' dx - whatever that may be. My eldest has just been told to take pain relief when his stomach goes into spasms. All of them have had partial dx of food intolerances - which have alleviated some of the windier aspects.
DS1 also has dx of dyspraxia - which can also give stomach cramps in its own right. DS3 has swallowing disorder. So i'm still waiting for someone to have a light bulb moment and say - lets test for 'x' - and it's confirmed.
Another part of me says - unlikely. I've had similar - but not as severe issues for the last 45 years and still none the wiser.
I feel for your DD as some days you can feel so depleted that you just want to curl up under the duvet and hibernate - and that's no way to feel when you're a child.