Waiting for biopsy results after possible Crohn's, how can I help DD?

[xxautumnxx]

DD20 has been having symptoms since March of loose stool, blood in stool, fatigue, tummy pains and weight loss.

She went for a colonoscopy and endoscopy last week where they said it could be crohns but have taken 20 biopsies to test.

DD is now finding that when she eats or drinks anything she has really bad stomach ache and needs to rush to use toilet. She had this before the tests but now is worse. She is having to sleep a lot of the time and walks very slowly as she says she feels heavy.

She has been to the GP who prescribed heartburn medication and other than that she has been told she will be contacted with results of biopsies in 4-6 weeks.

Does anyone have any advice on how I can help her feel better during this wait?

Im a Crohn's mum, it sucks but is manageable with good consultant care and medication. Crohn's or Ulcerative Colitis can usually be diagnosed from the scopes, no need to wait for biopsies. So I wonder if they are looking for Coeliac issues?
As the biopsy is done, she could try avoiding gluten for a bit to see if that helps? Or follow the Fodmap diet? Its also been very hot, so she should try some rehydration drinks, as she may be mildly dehydrated. At this point anything to help manage symptoms while she waits for results is worth ago.

Thank you. At the moment she is barely eating anything and even just water sets her tummy and bowel into pain.

We do have coeliac in the family.

I didn’t realise they normally diagnose it without the biopsies.

Biopsy is a part of diagnosis, but in my experience they'll tell you straight after the scopes.
How about some Ensure drinks? Or small meals of white and bland foods - white rice, potatoes, chicken. Its called a low residue diet, it may help short term.
She needs to watch her hydration too, DS has ended up in hospital twice due to dehydration. Dioralyte, ice lolly's, anything to slowly add fluids. Avoid diet fizzy drinks and caffeine though.

My son has crohns. Diagnosed at 8, now 24. He was diagnosed at the time, though biopsies were taken. He was also put straight onto medication.

For now, for your daughter, it might be worth trying a liquid only diet. It really helps calms things and gives the bowel a rest. You can buy Ensure or equivalent drinks. Make sure they are nutritionally sound though, they need to have enough calories in them.

You can also try a bland diet of just white foods, pasta, rice, bread etc. Avoid anything high fibre for now.

There will be "trigger" foods that can make things worse when flaring. My son's is always tomatoes, chocolate etc.
We have had to do this over the years when my son has flared with his crohns. He has also been on steroids at various times over the years to help with the flare up's. This may be an option for your daughter. At least it could help until she gets a diagnosis. He GP should be able to prescribe these.

It is really important to keep up hydration. Does your daughter have someone to contact at the hospital to say how ill she is?

Thanks both. Last night she just ate plain chicken and white rice and was in a lot of pain after.

I have been trying my best to get her to drink more water but she is resistant as it hurts her.

I will have a look at the Ensure drinks.

We have no contact at the hospital as she was referred for the tests by A&E after the walk in centre sent her there. We have not been able to get an appointment with any of our GPs but we saw one on Saturday who prescribed pantoprazole as she also had redness in her stomach on the endoscopy. But we have had to wait for the chemist to order this in so we only collected this today but I’m not sure how much it will help as the pain is mainly bowel pain.

Im not in the UK, so slightly horrified to hear she has no consultant and her GP is managing this. For food and drink, little sips and mouthfuls, abandon the idea of a meal for now.

Try Crohn's & Colitis UK for advice? They have a phone helpline and useful guidance for managing a flare (which is sounds like shes in)
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Thanks for the advice, it is tough that we are left waiting for what could be 5 weeks more when she is barely eating or drinking. We called the endoscopy unit for advice but they told us to call GP but they were limited in their help.

Just an update, GP has prescribed codeine and her ct scan is back showing swollen lymph node and free fluid on lower right side. GP has said this fits with a crohns diagnosis, so we are waiting for biopsies and hopefully these tablets will help with her pain.