to think the hospital should take us seriously now?!!

[SoCockneyItHurts]

So a bit of background....10 months ago my 8 year old DS (7 at the time) started to have diarrhoea, every day out of the blue. Left it for 6 weeks, went to GP who said to do a stool sample (all clear) and then wait another 6 weeks to see if it stops. It didn't so GP referred to hospital. Bloods done at hospital, show anaemia but otherwise okish I think. Hospital asked lots of questions and came to the conclusion that DS has "fast gut transit time" which means he eats then poops. We wasn't happy with that. Anyway the diarrhoea gets worse so we ask to be referred back urgently, more bloods done to rule out coeliac disease and Inflammatory Bowel Disease (which we believe it is) and again all clear apart from inflammatory markers being slightly raised but not enough apparently for DS to have Crohn's. Still anaemic but they don't seem concerned. Hospital still saying Fast Gut etc. In November DS got an awful anal abscess which he ended up in hospital with to have it lanced under GA. Absolute nightmare, they discharged us without a summary which I had to chase them for for 4 weeks! Info on summary incorrect and no follow up was made. Went back to consultant (different hospital, same Trust) who still insists fast gut transit and says that kids always get anal abscesses!! Want to scream at this point. Meanwhile my poor son is having severe diarrhoea up to 5 times a day and his abscess site still not healed properly and he is having bad stomach pains after eating. 10 months this has been going on for!!! Even his school are concerned about his tiredness in school. And then today it looks like he has developed another anal abscess! It's a hard, red and very painful lump under the skin right next to his anus To say I'm devastated is an understatement. He's in pain again and so scared of going through all of what we've been through over the at 6 weeks again. He's already missed 3 weeks of school so far this academic and now it looks like he'll miss more. But part of me really hopes that we'll get taken seriously now and they'll investigate further and hopefully diagnose something! It's a nightmare.....my heart utterly breaks for him. The psychological impact from the diarrhoea alone has taken its toll and now this again! Has anybody experienced anything similar? Or can you please offer any advice? Thank you if you read this far :(

[ThePinkOcelot]

My dd had toddler diarrhoea and that was horrendous. Your poor ds! You must feel like your banging your head of a brick wall. I hope you get some answers soon x

[Onceuponatimethen]

Sending you some

I don’t have any advice as no experience but you sound like an amazing mum battling to get a better situation for her ds

[SD1978]

You need a gastroenterology appointment. It’s nit an emergency, they can’t fix it. Your GP should have referred you. Whilst the access is an emergency, finding out what is wrong is a specialist thing. If there is a significant wait, could you go private?

[MrsFezziwig]

Viviennemary you may never have heard of a child getting an anal abscess but they do (not as commonly as adults though).

[notapizzaeater]

I took my sons red book with me to show that he'd been on the 95th centile from birth and was now on the 50th centile so was dropping down as they kept telling me he was normal height/weight

[HappyHedgehog247]

I'm wondering how long you cut out wheat for and if you cut out all gluten. I read your post and know he tested negative for coeliac but I know someone with a sever me intolerance but not an allergy. They pass the test but get seriously ill if they eat gluten.

[HPandBaconSandwiches]

I’m so sorry OP, you and your son are being let down.
Find a good paediatric gastroenterologist and ask your GP for a direct referral. Do not use the same Trust. If the wait time is more than 2 months, go private if at all possible. Having the initial consultation privately doesn’t mean you have to have any further investigations or treatment privately, you can switch back to NHS care.

Do not leave the GP surgery without the referral, and check with the admin team a week later that it has been done and sent. Do not leave the hospital consult without an appointment for a scope.

Ways to help being taken seriously:
Make a diary of all food intake and diarrhoea episodes.
Plot out his growth (height and weight) over his lifetim if you can. It is likely to show a drop over centiles since his illness and that always rings alarm bells.
Take a sample with you to the hospital appointment.
DO NOT GO GLUTEN FREE before you see the consultant - it will affect the test results. Try not to change the diet at all.

If you need A&E for this abscess, chose the hospital/Trust you want to be seen at for further investigations. Might make things quicker.

On a practical level, make sure DS has access to baby wipes (something plain like water wipes) for his bum each and every time, so reduce the risk of abscesses.

Time to unleash the quiet, controlled but very firm tiger inside OP. You know what he needs so bows the time to fight for it.

Good luck to you and your son.

[SoCockneyItHurts]

Thank you HP xx

[jennielou75]

Ask to be referred to St Marks hospital which is on the Northwick Park site in Harrow London. They are a specialist bowel hospital and they really know what they are doing. I had endoscopies and colonoscopies there and if my Crohn's flares up I get a straight referral back.

[GreyCloudsToday]

SoCockney you might also consider pushing for an iron transfusion asap, as your son being anaemic may well be preventing the treated abscess from healing. Hope you get some answers soon

[HPandBaconSandwiches]

^^Yes to an iron infusion, he’ll feel much better for it if his anaemia is considerable.

Forgot to say, with the food/diarrhoea diary, write specific times in, so they can see the amount of time from eating to diarrhoea episodes.

Write a timeline too from when it all started, and what’s been done so far, so you don’t waste time at the hospital appointment trying to remember. Type it out and hand it over.

[HPandBaconSandwiches]

For your info the British Society of Paediatric Gastroenterology have these guidelines for management of inflammatory bowel disease which quote the European Society guidelines for indications for paediatric colonoscopy see table 5.

The British guidelines are written by paediatricians you may be able to find locally.

[jennielou75]

Oh and as for the weight thing I was a morbidly obese adult with Crohn’s disease before I had bariatric surgery! My body just held on to anything it could and stored it as fat. It was in survival mode. Yes most people lose weight or maintain but not all. It affects people in different ways.

[thelastredwinegum]

Just came on to say St Marks and see a pp has mentioned it already. A friend goes there (travels a significant distance to get there) and says they're fantastic.
Not sure if they have a peadriatric dept or not.

[shouldwestayorshouldwego]

Agree to push for specialist referral. It is not normal. Coeliac blood tests were negative for me but complete elimination of gluten has made me much better. I am hypermobile and one symptom of that can be allergies and intolerance with a leaky gut. It might be worth looking at Ehlers-danlos syndrome if he is unusually flexible to see whether any of that sounds familiar. It is more likely to be an intestinal condition but there are other systemic conditions which can have associated gut issues.

[thelastredwinegum]

Would doing the Bristol stool chart be worthwhile as well?

There are (for want of a better word) poo tracking apps you can get, although these may be harder to keep track off while he's at school.


Make sure he stays hydrated and has an electrolyte solution too, lucozade sport, diorylte etc... st marks have a recipe for one (page 2) www.stmarkshospital.nhs.uk/wp-content/uploads/2014/05/High-output-stoma-2014.pdf

I buy electrolyte powder though and add to squash.

Also I know he hasn't been diagnosed with anything (really hope it's good news when you get to the bottom sorry of this) but I would avoid ibuprofen in the meantime.

Poor little man

[Rosie70]

It definitely sounds like Crohns to me. My son has ulcerative colitis, diagnosed at age 5. Your little boy needs to be referred to a paediatric gastroenterologist asap. Can't believe you've had such a hard time getting a diagnosis.

[Rosie70]

Also, he was diagnosed via endoscopy/colonoscopy where they could see the ulcers in the gut. Children are always given a general anaesthetic for this. He hasn't lost weight at the time of diagnosis.

[Dungeondragon15]

DO NOT GO GLUTEN FREE before you see the consultant - it will affect the test results. Try not to change the diet at all.

It is true that not eating gluten will affect the results but considering OP may not get an appointment with a new consultant for a few months it is probably worth trying a totally gluten-free diet for a bit anyway.

[jennielou75]

St Marks does see children but I don’t know if they have a special clinic for them. When I am in a flare up I just eat bland foods. Very unhealthy but as little fibre and acid as possible. Oh and something that helped was probiotics. I was recommended some by a specialist and they really helped. I can’t remember the name but it is v something 20 I think and I bought the sachets online.

[GrainOfSalt]

Another one here who says you need the biopsy to rule out coeliac disease. Bloods can come back negative - I have a family member who was finally diagnosed through biopsy after clear bloods

[jennielou75]

Ok mine were vsl #3 sachets. Get advice on what might help as I found the probiotics reduced the acid in my stools which meant I didn’t get as sore. It might be worth investigating it.

[thelastredwinegum]

If he's getting sore Palmer's bottom butter is wonderful also on sore noses from having a cold and I know not great but moist toilet wipes.

[SoCockneyItHurts]

Thank you all so very much for your informative and supportive replies xx. It seems he definitely does have another abscess.....it's rock hard and so painful bless him. He can't sit on his bottom. We are going to docs first thing tomorrow where I will demand an urgent referral to a children's hospital and will also take DS straight to A&E at my hospital of choice if the abscess doesn't respond to antibiotics as it didn't last time. Feel so sorry for him and can't believe we have to go through this again. He's only been back at school 2 days! The school are very supportive though and I'm going to ask them to do me a letter of support for the hospital as they said they would. Somebody mentioned weight loss and the fact he hasn't gained at all in the last year.....well I've checked his Red Book and he was on the 91st centile at birth (10lb 5oz born) and then plotted just above the 75th centile up til age 5. He is now between the 9th and 25th centile so I'm not sure if that is relevant at all? Thank you all again....I really do appreciate all or advice and support xxx

[brownelephant]

maybe a coccyx cushion (amazon) might be a good idea for his poor bottom.