Colitis/IBD Flare - Up - Safe Foods Help ???

[RockinHippy]

Can anyone advise please - I'm getting confused by what I'm finding on Google & my poor 12yr old DD is in enough pain without my risking giving her something that will make it worse - she was in agony after trying a spoonful of salmon last night & I've just seen it listed as safe

We have no real current treatment plan currently lots of banging of head on medics wall & not getting very far very fast though we do have pain meds etc, it's barely managing it, but along side herbal teas & hot water bottles, if we can manage her food well, we are just about coping. Though hoping for some help from her gastro doctor soon as she had more tests today.

That said she is wasting away, she's so weak she struggles to walk etc & we are now 3 weeks in & she is eating spoonfuls of mashed potato, plain rice & GP said banana is now safe - lots of fluids of course, but that it

She can't tolerate dairy or wheat when she's like this, so we are left with the above rice, mash & banana, rice with turmeric too

She's really fed up, just wants to be well again so she can go back to school & the more down she gets, the more we worry as she withdraws more & more & I'm hoping there are foods I can safely give with more nutrional value, so as to build up her energy etc again

What foods are safe for a badly inflamed colon??, (current cause not yet known, but GP thinks colitis triggered by virus & exam stress)

Will Spirulina make it worse ??

TIA

Anyone ??

Has your daughter seen a gastroenterologist? If so do they have access to an IBD nurse who you could ring for advice.
From your post it sounds like you only have the GP for advice? I'm only going by my GP but they are certainly not experts in this field!
Your daughter sounds like she is really struggling so if she hasn't been referred I would be asking for an urgent referral.
I do have colitis but quite mildly, even in a flare I can eat a wider range of food than your daughter is eating, but I would say make sure her hot drinks are not too hot! Sometimes it's recommended that people use drinks such as complain and no food, but don't do that without prof advice.
Maybe join one of the Facebook groups 'crohns and colitis uk forum' as you will find more people with experience.
I really hope your daughter gets a bit more medical support.

Hi Rockin i have had colitis for fifteeen years. Really bad at the start like your Dd.

With a really inflammed Colon you want really low fibre ( sometimes called low residue) diet. So white bread ( no crusts) toast is Ok, white rice, mashed potato, a little milk, steamed or poached chicken or fish, strained soup or broth with no veg left in. Ideally no fruit or veg unless tinned fruit. Bannana must be very ripe. No seeds or nuts of any kind. This is just in the short term until the colon heals. I would request an urgent dietician referral.

It is really very difficult at the start as they need to complete the tests before they can start treatment but once they do she will hopefully get better really quite fast.

The medical treatments have really advanced in the last ten years although it is a horrible disease particulary for a child.

Try and get in contact with the Crohns and Colitis society they are very good.

for you and Dd you must be very stressed.

Sorry I missed the wheat and diary intolerance. You can give wheat free toast and Sainsburys do a diary free spread called ( I think) Pure.

Please please get a referral to a gastroenterologist. Celiac here with immune mediated colitis also (joy!). Stick to simple carbs, no fibre, mashed potatoe, potatoe waffle sandwiches on white bread (yum), applesauce no skin, mashed bananas, custard etc. good luck

When I'm flaring I do a three day diet of mush/liquid. This is absolutely a short term thing though just to give my colon a rest. On day 1 I'll just have yoghurt/honey smoothie drink and pureed apple; day 2 same as day 1 but some plain white rice as well (cooked until soft); day 3 yoghurt with more varied pureed fruit (I buy the baby food ones as no seeds left or anything), plain baked chicken breast with mashed carrots for dinner.

Basically 3 days' avoidance of fibre, milk (yoghurt easier to digest), sugar, Red meat etc.

This seems to be enough to help my colon recuperate.

The difference is though that I'm carrying a little more than enough weight so 3 days of low nutrition isn't a problem.

Please request your IBD specialist to refer DD to a dietician.

While I second entirely what Sunshine says about a referral, in this area to get to see a paediatric Gastroenterologist you need to have had an abdominal scan, then a Barium swallow and a coeliac test and then they will consider allowing you to travel the 70 mile to the nearest NHS paediatric gastroenterologist. By this stage most children are very ill and most parents are beyond frazzled and are exhausted.

OP my son is 13 we are awaiting test results too. I am so tired of watching him suffer. The NHS allows this. If I made him suffer like this Social Services would be on my doorstep. Some days I am tempted to phone them up and invite them out to see the state of him.

And Yes GP's are clueless about inflammatory bowel disease in both Adults and Kids. Apologies for rant, I don't want to hijack your thread

That sucks guys - sorry if I sounded flippant - GP did my celiac bloods (Scotland) and it was about 4-6 weeks for the specialist referral (including dietician appointment, bone scan and then a geneticist 3 weeks later) and the the gastrenterologist does the scans, endoscopies etc. Didn't realise it was so difficult elsewhere

Another thing to try OP is diarolyte or its equivalent. Research shows that maintaining simple sugars and electrolytes by drinking diarolyte (or eqivalent brand) supports regeneration of the cells in the intestines and so helps the guts to heal