Dd (9) and severe gut issues

[pastypirate]

We are awaiting an ultrasound (its next week) and bowel and bladder clinic appointment. We have had blood tests for coeliac and thyroid function. They were clear.

Dd symptoms are becoming terrifying. Gut spasms that make her scream in pain and constant diarrhoea. She's been taking laxido for about 5 years. We have now been prescribed sodium piculsulphate, lactulose, buscopan and sennakot. Dd swings between constipation and the opposite. She's missing school and this is increasing.
I'm asking for a redeployment at work now because she's sent home a lot of can't face school and it's affecting my job.
I'm getting more scared now that it's a serious.

There's no bloating at all so intolerance seems less likely. I'm lost.

Have they done a calprotectin (poo sample) test? Can you push for a gastro referral (might take a long time)

I’d be asking them if it could be Crohns. I’d also be giving her some good probiotics in desperation to see if it helped at all. Does the buscopan help when she’s in pain? If it isn’t I’d ask if she’s old enough for Mebeverine instead.
I really feel for you OP it’s awful when your DC are ill. If you can afford it I’d book a private appointment with a Gastro Paediatrician because you get a much longer appointment so you can get all your questions answered and make a proper plan for next steps.

@WestIsWest I have given her a probiotic every day for years and years. I'm careful with what she eats and make sure she's eating loads of fibre. The buscopan does seem to help a little bit

No.

Definitely worth trying to get the doctor to do a faecal calprotectin, helps to rule in or out Crohn’s/Ulcerative Colitis and is simple to do.

You should ditch the probiotic. It could be the source of her problems

If its IBD the fibre will make it far worse. Try her on a low residue diet.

I have Crohn's. GP can do a calprotectin test to see if it's raised levels, then it will be IBD. Might be quickest method to get something started.
She is taking a lot of laxatives there ( i also have a ds with a different bowel disease) plus lots of fibre, so no wonder she has diarrhoea. I know it's hard to find a balance if she is also getting constipated. I'd give her the sodium picosulphate just when she needs it, and follow a lowish fibre diet the rest of the time. Good luck, I hope you get it sorted, bowel problems can be so painful.

Avoid high fibre food (opt for a low fibre diet), veg and pulses that cause gas, and artificial sweeteners. See if the diarrhoea and pain (maybe it’s gas) goes away. If not, the doctor needs to do more tests.

As previous posters have said, please press the doctors to check for Inflammatory bowel disease. Have them do an endoscopy and a colonoscopy if a CRP test is inconclusive.

Also put her on a plain low fibre diet, not a high fibre diet e.g plain white rice, plain chicken/ fish/ tofu and well cooked veggies only, limit raw vegetables.

It seems counter intuitive but fibre only irritates the gut if you are having an active IBD flare and if she is diagnosed with IBD dietician's will certainly have her go on a low fibre diet until symptoms become manageable again.

I was diagnosed with Crohn's disease at 6, now 20 years ago so I have lot's of experience on this!

My son had very similar issues when he was 6. His constipation at that point was so bad he was on very high doses of movical and he was under the toilet training clinic. Like your daughter, he used to scream in pain with gut spasms. Doctors said he wasn't getting enough fibre, so this was increased [ which made everything worse ]. He also developed massive sores in and around his mouth.
He then started severe diarrhoea, which was just awful.

Doctors were useless, just prescribing movical and antibiotic cream for his face. It took me two years to finally get a referral to paediatric gastroentrologist. He had bloods and a cal protectin test which showed very high level inflammation. After a colonoscopy and endoscopy [ under a GA ] he was diagnosed with crohns disease.

Insist on a cal protectin test [ stool sample to look for inflammation ] and a referral to paed gastro.

Pastypirate I hope you get answers for your little girl and good, natural strategies for managing everything going forward 💖 My son is 9, had bad constipation and on Movicol for the past 2 years. He is in a good place now tg. So we are currently trying to move forward with a more natural remedy for him.
It is a long road. X

Apart from the sores this is exactly where we are.

Thanks for all the replies. So far fish and chips has sparked the worst reaction.

Am also trying to manage exh reaction to all this which is to insist that white carbs are the problem. She hasn't eaten any of that today. And that all medication is to be avoided. Don't wholly disagree but we arnt there yet.
Exh wants to try elimination diet. I want everything managed by a qualified professional because I can see exh confirmation bias being an issue here.

I wouldn't have known about the low fibre thing at all before this thread.

Looking at high fibre lists the only thing to remove would be weetabix which she has every day. And the seeded bread we have.

High fibre foods can be vegetables, especially under cooked ones, sweetcorn, peas, pop corn etc. If it is IBD then white carbs are the answer, not the problem.

Ask your GP to do a stool test

Bowel and bladder clinic referral has been rejected. Now have to wait until 18/08 for gp appointment. Ffs

Could you afford to go private to see a paediatric gastroenterology specialist? Not a standard paediatrician. They can then refer back to the NHS after.

She needs to see gastroenterologist.
My dd was diagnosed last year with Crohn's. She was pale, thin, tired, constant diarrhea. GP thought was coeliac but that came back clear. He didn't do calprotectin but did refer to gastro emergency team where we were seen within about 8 weeks.

Tbh I would take her to A and E next time she is in pain, beg them to check her bloods and calprotectin. I was terrified it was leukaemia as dd was just fading away in front of me. The bloods did at least rule that out, and the gastroenterologist could tell immediately that it was IBD from the pattern of her results.

My ds had not as severe and slightly different symptoms when younger he had a colonoscopy and gastroscopy and was referred to peads gastro.someone I knows daughter had similar and got diagnosed with chrohns.
I really think with them symptoms for such an extended period of time you should taken more seriously and the referral should be to a paediatric gastroenterologist as I believe bladder and bowel clinic is more todo with incontinence which is why they probably rejected the referral.

sorry you are going through this hope you get some help.

Thibk I will have to look into cost if this

She's pale and tired for sure. This Knick back today has shaken me but you're right it's not a continence issue

Thank you for all the replies on this post I really appreciate it x