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 :(

Thinking of you OP. This thread is so heartwarming. So much support from people who've been through similar. I wish I'd had the courage to post when ds was first ill and being diagnosed.

to OP and everyone, especially the IBD sufferers.

Good luck OP

Again....thank you all so very much x I never imagined I would get such amazing support and so many people offering their experiences and advice, I'm truly grateful x Well we are still at home....I feel awful with this cold so have been resting as much as possible....as well as partaking in a 4 hour game of monopoly! DS is comfortable, I've been regularly checking his bottom and there isn't much change, no bigger and no smaller and nowhere near as painful as his last one was although it's still early days. In the morning I will check it again and if there's still no change or if it's got bigger then we'll make our way up to the hospital. I'm really hoping it does get better with the antibiotics as I can't bear for him to go through all.of that again. But I'm not hopeful and fully prepared for what may lay ahead. I'll update in the morning and thank you again. Night xx

Fingers crossed things improve over the next few hours, socockney. Awful that you’re feeling rubbish on top of all the worry.

Try and get some rest tonight and update us tomorrow

Hope you’re both feeling better tomorrow OP

Quick update....his abscess burst a couple of hours ago and has drained loads of pus. I called 111 and was told I could bath him and clean him up and put a dressing in to soak up any drainage. Said to call gp in the morning to see what we should do next. He's a lot more comfortable now and hopefully we've avoided surgery but not sure if we'll still need to go to hospital to make sure the wound is clean and fully drained etc. I'll keep you posted xx

Hi OP. I am.glad your ds is more comfortable now. I hope you get some progress with diagnosis very soon.

I havent posted up until now because inhave no experience of bowel disease and you have had some brilliant advice. It did just occur to me though that it might be worth looking at the NICE guidelines for diagnosing inflammatory bowel disease. I find it helps move things along a bit of you quite from them sometimes.

Best of luck. Hope your ds improves soon. Its so stressful having a poorly child and not knowing why. You are doing a great job.

*guote not quite.
So many spelling mistakes. Hope you can make sense of my post!

Glad he’s more comfy. Good luck with getting a swift diagnosis and some help for your poor boy.

It sounds as if you will be sent along the right track now. Good luck.

Thank you xx I can't get GP appt so I'm waiting for one to call me back to see what we should do next. I'm wondering if I should just take him to A&E Evelina as I don't know whether he'll need a wash out or anything? He drained a lot of pus so there must be quote a cavity and I'm worried about fistulas etc as it burst on its own and I've heard that can cause further problems. I think I'm just gonna go and see what they say.....I have nothing to lose xx

Definitely take him. Hope it goes well SoCockney

Thank you HP.. I'm going shortly xx

GP just called and said to let it drain and keep it clean and to carry on with the antibiotics. She said there's no point going A&E and to wait for the appt. with the gastro. He's not in bad pain and the abscess is now flatish.....I just don't know what to do for the best?!

If it is the same GP who was helpful at the last appointment I'd probably be inclined to listen to her.
Another random doctor who isn't so aware of the issues/was previously unhelpful, maybe go anyway?

Seems like reasonable advice, you can always change your mind and go later if it’s worse or you’re worried. Hope you’re feeling better too.

I still feel rubbish....but I'm happier now that the abscess has burst and is draining and that DS is out of pain. And A&E isn't going anywhere so I can always go if need be. I'll keep a close eye and if it gets bigger or redder or if DS is in a lot of pain then I'll go straight there. Hopefully we'll get our appt soon. Thank you all again xx

I hope he feels better. Glad you're under gastro care but I hope it doesn't stop when this abscess heals. I would push for a colonoscopy and endoscopy. The outcome for IBD sufferers is so much better if their condition is managed well and early before too much damage is done to the insides. Many sufferers don't get a timely diagnosis either and are fobbed off. Sharpen your elbows if you have to, be pushy.

Im so pleased your son is in less pain now. I would say priority now is to expedite the paeds gastro urgent referral. So now best thing would be to ring gp practice and ask to speak to the practice secretary. They should be able to tell you whether the referral has been written /sent. And how it was sent, electronically or fax or post.

If sent by post you could speed things up by asking them to fax it. This gives you a good opportunity to ring the paeds gastro consultant's Secretary and ask if they've received the referral yet and if not, to ask for the fax number, or secure email address, so you can pass it on to the GP Secretary. Whilst speaking to consultant sec you can ask what the likely wait time is because your son has x y z symptoms including diarrhoea, abdo pain and 2 anal abscesses, and you're concerned at his lack of growth and high inflammation on blood tests. Also that you are worried whether the abscess needs any more treatment so you hope he can be seen within next 1 week as an urgent if that were possible.

Be polite but try and get into situation where sec says they'll put the referral letter on consultants desk with a note saying you've been in touch and requested v urgent appt for x y z reasons.

Good luck xx

I haven’t read the full thread so apologies if I’m repeating what someone else has said but Op this sounds like us 4 yrs ago, my 10yr old had daily diarrhoea & was a little anaemia. We were back and forward to the gp for almost 8 months and got nowhere. Her stool samples and blood tests were all deemed normal however it has since transpired that her levels of inflammation were slightly raised each time, just not enough for the gp to take seriously 😤 we eventually paid for a private consultation with a paediatric gastroenterologist who within 10 mins of chatting to us diagnosed an IBD. Fast forward a few weeks & she was at the local children’s hospital having scopes & the next day we got the diagnosis of Ulcerative Colitis- I dread to think what would have happened if we had just listened to our gp who insisted we didn’t need a second opinion and said she had stomach migraines & would grow out of it 😥 push for a stool sample to check for faecal calprotectin levels as if these are high it’s a marker for IBD, my gp hadn’t even heard of this test when I mentioned it after her diagnosis! Please source a second opinion ASAP & fingers crossed for your boy op that he gets a diagnosis & treatment very soon.

Thank you all.....Jelly I've just called the GP to get the details of the referral and called the booking management service that we use in this area (it's my job to refer people to consultants) as I call them a lot at work. They have received the referral and it's marked as urgent but the Evelina is not directly bookable, I have to do it with a letter that they are going to send out to me first class today so I should be able to ring the Evelina tomorrow and book an appointment xx

JamesNesbitts....thank you for that!! It sounds identical to what we've been going through and hopefully now we're on our way to a diagnosis. Now that he's had 2 abscesses the Evelina will do further investigation so I've been told by the surgeon at my local hospital. I have the paperwork and bottle here ready for the faecal calprotectin test... I just need to wait for DS to have a poo but he's too scared to go bless him. As soon as he does I'll take the sample to GP. I'm a little concerned about him, he's not eaten and hasn't moved off the sofa since he's been up. No fever though.....will keep a close eye. Thank you again for sharing your story xx

Poor little mite, I know how tough it is and as a parent you feel so helpless. It seems that things are moving towards a hopeful diagnosis for you so I hope you won’t need to wait much longer to get answers. I’ll be thinking of you and keeping my fingers crossed he gets the treatment he needs very soon. Hugs to you op, stay strong x

((TMI)) I find those cardboard vomit bowls you get from hospitals good for shoving in the toilet to catch poos for the calprotectin test. I then bag and bin them when I have a sample. Steel yourself it's not a nice job but it makes it more normal for a kid when they need to make a sample.

Poor soul, do watch out for dehydration, can make them pretty listless.
So glad the GP did the referral so quickly for you, that’s excellent. Fingers crossed you’re seen quickly. When you make the appointment, if it’s a decent wait, don’t forget to tell the admin person that you’re happy to take a last minute cancellation, if you’re able to do that with work.

If the referral has gone through as urgent though I’d hope you’ll be seen within a couple of weeks.

Don’t waste that first appointment - take every bit of info with you, well organised, so you can spend most of the time finding out what they’re planning to do.

Very best wishes to your DS