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 :(

[SoCockneyItHurts]

Thanks Brown....I've ordered one today x

[canoechick]

Hi someone already said this but it looks like it hasn't been seen. Get your GP to send a stool sample for faecal calprotectin - your Gp can do this it doesn't have to be a specialist doctor . (I see you have had a stool sample sent before but normally this is only sent for culture to see if any bacteria not for this test ). If this is positive it is quite suggestive of IBD so then I'm sure he will get a colonoscopy.
Additionally you can always ask for a second opinion for a different paediatrician or paediatric gastroenterologist

[WhentoD]

such a dramatic drop in the centiles is very important to tell your gp about. That will support your insistence on a referal. He's crossed multiple centiles. It's worth checking if he has also dropped centiles for his height.

[Cornettoninja]

Poor sod

When you say hospital of your choice do you mean a children's hospital a&e? Excellent choice if it's no issue travelling there.

[SoCockneyItHurts]

I'll mention the centile drop tomorrow....and ask for the faecal calprotectin test. Yes the hospital of my choice is the Evelina Children's Hospital in London. It'll mean a short train ride but will be worth it x

[Partypopper123]

See my post from yesterday OP, I had a huge fight to get a fecal calprotection sample taken for my DS, but it's the next best thing to an invasive colonoscopy. GP's often aren't aware of them as they are are more specialised gastroenterology test.
In my DS's case it ruled out IBD.
Good luck with everything.

[LuluJakey1]

If the abcess has a head on it, a hot bath followed by sitting on the look might help it burst and relieve the pain?

[SoCockneyItHurts]

Thanks party.....and lulu, no head yet, it's quite deep but I can see its slowly coming to surface. His last one had a head the size of my little finger and didn't burst. He's old wound is still healing bless him. And now he's holding his poo in through fear of the pain :( xx

[Synecdoche]

I would be asking for a colonoscopy, gastroscopy, gastric emptying study and full blood screen including the coeliac gene test and vitamin screens.

Only after these investigations would I try any medications offered or an exclusion diet like the low FODMAP diet under the guidance of a dietitian.

Hope you get some answers soon, your poor DS :(

[Partypopper123]

I really wouldn't try to burst the abcess OP, from my own experience of ibd once it's burst it may become a tracking fistula. It should have medical supervision or maybe even surgical drainage. Is he on anti biotics for his abcess at the moment?

[SoCockneyItHurts]

Thanks party....I remember reading somewhere last time that it bursting could cause further problems like you mention. And yes I started him on antibiotics today as luckily I had a prescription here for them that the GP gave me in December when we thought his other abscess wound was infected. Thankfully it wasn't but I'm glad I still had the script xx

[SoCockneyItHurts]

Synecdoche I'm going to make sure I ask for everything this time! X

[MissDuke]

Hi op, I am sure this has been mentioned by someone, I have not read all replies! But you say you cut gluten out previously - was he definitely eating normal gluten levels up to him being tested for coeliac? If not, the results could be unreliable.

I hope you get some answers soon

[SoCockneyItHurts]

Yes I think so missduke as his diet is quite wheat based with bread and pasta. I'm more inclined to thinking it could be IBD as he has now had 2 abscesses xx

[notapizzaeater]

Dropping the centile was was the only reason they took me seriously

[Scarydinosaurs]

Poor kid. I have ulcerative colitis and same symptoms. You need a colonoscopy to diagnose. I’m so sorry this has happened 😓

[SoCockneyItHurts]

Also the first time in took him to A&E a surgeon came and spoke to me and said it's highly likely that my son has Crohns because of the abscess and that it is very likely it will return. She said he would need to have it drained and probed at a special children's hospital as the surgeons at the hospital we went to wouldn't want to touch DS abscess as they are not very familiar to that field of surgery......and then I never saw her again!! She was the surgeon on night shift and come morning time nobody knew a thing about what she told me and before I knew it DS was prepped and operated on and discharged without us even seeing a doctor after or a discharge summary!

[SoCockneyItHurts]

Notapizzaeater that's reassuring thank you.....I never even thought to look at the charts until a pp mentioned it here. So glad I have that to present to the hospital xx

[Stolenchoccies]

That is outrageous. Poor wee boy. Yes to beomg pushy. And a and e if no luck with gp

[REBECCAB123]

I don't know if this helps - I presume they have checked a stool sample and ruled out underlying conditions. One thing I notice with my own son is if he has a large amount of sugar, his body doesn't seem to process it well and it does result in diarrhoea. I thought at first it was a wheat intolerance or something similar. I now know that it's definitely sugar. It would be worth getting him checked for allergies though. The only other thing I would say is to make sure those fluids are being replaced as he's obviously losing a lot of liquid and needs to replace plus the salts. I really hope you manage to rectify this quickly as it must be such a worry for you x

[Stillonthatbloodycomputer]

I've not read t the end so forgive me if I've missed something, a very close friends sn went through similar and believe it or not it turned out it was an impacted bowel, because poo is hard and backing up any food just went through him, once it was diagnosed which again took months he's fine

[TracyBeakerSoYeah]

Sorry to hear about your poor son & everything you're having to deal with.
Just to let you know that a family friend's DS had a similar issue with their original hospital & eventually got referred to GOSH (brilliant hospital) who diagnosed Crohns.

[Rose1981]

Hi, sorry your child is going through all of this. The little advice (which may have already been mentioned) is that if you feel the hospital has not been thorough enough you can always contact their PALS (patient liaison officer) who should be able to offer you impartial advice and may be see if the hospital can do more. Good luck and hope things get better.

[MaximumChocolateNeeded]

I have colitis and get abscesses. Right at the entrance!! It's bad enough as an adult!! Does he get mouth ulcers?

You can only diagnose crohns or colitis with a colonoscopy/endoscopy. Not a blood test. My CRP is only slightly raised in a flare up, but put a camera up there and it's raw and ulcerated.

Are you near any kids hospitals? X

[MaximumChocolateNeeded]

Also have they not tried a short course of steroids? If they work you can pretty much diagnose a bowel disease x