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 :(

So just a little update x DS is having his endoscopy and colonoscopy on Tuesday. I feel so sorry for him. The lump in his bottom which is believed to be a fistula is causing him some discomfort and he couldn't go to school today. I did take him but he was in pain just walking. And on the way home he got really tearful and had a bit of a cry. Poor little boo....I just can't wait to find out what's going on with him xx

I hate your son is going through this. You are a great mum. Hope you get some answers after the tests next week.

so glad you are making progress.

Honestly, ypushould just go private for diagnosis. The NHS is pretty hopeless.

Have they tried a bile acid sequestrant? This kind of think can be caused by a defective gall bladder. I hope you get answers soon.

Eggs she isn't going to get quicker now than a colonoscopy and endoscopy on Tuesday. Plus paed's gastro consultant's bleep number in her pocket.

You're doing amazingly well. Your poor little one suffering but very lucky to have a Mum like you on his side.

When I had fistula issues I was so ill I was hallucinating. Still get little 'spots' etc as smaller tracts can occur and like you said body just ends up constantly fighting infection.

Thank you for updating SoCockney
I’m glad the scopes have come through quickly, hopefully they’ll properly assess his fistula whilst he’s asleep - you could always ask. It may be that will need surgery, but at least they could make a proper plan.
Your poor boy. I’m so sorry he’s in pain. Don’t be afraid to ask for some decent pain relief for him.
Well done to you - must be an awful emotional roller coaster. Keep strong, keep pushing. I really hope the paeds gastro consultant continues to be helpful.
Good luck to your amazing son.

Wishing him well. He will prob need a lot of support with the colonoscopy prep medicines. You're doing a great job OP. Hope a clear diagnosis can be made.

All the best for the scopes tomorrow. Hope the prep hasn’t been too traumatic (don’t forget a waterproof sheet overnight, the prep can be vicious!).

Hi So, wishing you and DS all the best today and tomorrow. I had the same scopes last year and, whilst not pleasant, were bearable. Really hope this is the start of a diagnosis / treatment plan and things look better from now on. You've been amazing & we're here to support you.

Good luck from me too! Everything crossed.

Hope everything is going as well as can it can

Thank you all so much for your continued support xx Well bowel prep is going well and my little boy is a trooper bless him. He's starving poor thing but has handled everything really well so far. I made him his favourite of pancakes for breakfast as he's not been allowed food since 12 but unfortunately he was very sick after his antibiotics so his tummy has been empty all day anyway. But it's almost bed time and I'm looking forward to hopefully getting some answers tomorrow and we'll be up and out at 6am. Thank you all again and I'll let you know as soon as I get any news xxx

Poor little lamb and poor you OP.

You are being very brave, there's nothing worse than watch your child suffer and banging your head off a wall when no one listens. Hopefully tomorrow will give you all the answers both you and your son too need. It must be hard for him not understanding why this crap keeps happening. Sleep well, I'm sure you won't but try and good luck for tomorrow. Well done for your continued persistence!

Hope it all goes well tomorrow and you get some answers.

Thinking of you. If you think it's appropriate, you could pop a drink and snack in your bag for afterwards. Following a colonoscopy, I like to nibble on a biscuit or a peanut butter sandwich!

Op I hope you get the answers you all need soon.

Thinking of you x

Hoping tomorrow goes as well as can be and gets you some answers for you and for DS when he can!

Good luck for tomorrow, I agree with a snack for after x

I've just read the whole thread and want to send you hugs Op. Crossing my fingers for you and your DS.

Thank you all of you xx

All the best for poor boy. I hope are feeling a bit better mentally too.