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 :(

Socockney, good luck at your GP appointment tomorrow. Push for a second opinion, this isn’t right and imo your Ds needs an urgent colonoscopy. He’s suffered enough and no wonder you’re feeling stressed out.

I have Crohn’s, was only diagnosed last year. I feel relatively lucky that it only took approx 2 months to get diagnosed. I have read story after story of people taking years to get correctly diagnosed.

I was losing blood daily and going up to 12 times a day. Still initially my GP said I had piles after taking the pile suppositories for over a week I went back a few weeks later to tell her things were still really bad. Urgent colonoscopy within two weeks, no piles detected but a diagnosis of Crohn’s. Just shows that even when the signs are glaringly obvious it’s still dismissed as something less serious. Still, I do feel lucky that I was taken seriously within a short time. I only think it was down to losing blood each time I went to the toilet that I was seen so quickly.

If you’re on fb there is a great support group called Crohn’s Disease & Ulcerative Colitis Support UK

I am so sorry for you and your ds OP. Like many previous posters I have been through this with my dss. He suffered very similar symptoms as your ds and was eventually diagnosed with ulcerative colitis. You have been given some great advice for making a case to your gp when you see them tomorrow. But if they still don't refer him then can I advise you to move to another gp that will. My poor dss went through hell as his gp would not take him and his mother's concerns seriously. At one point they prescribed laxative to a boy with diarrhoea 6 times a day! I had a pretty good idea what it was so eventually worked with his mother to move him to our gp who immediately referred him the paediatric gastroenterologist in Oxford. He was diagnosed with ulcerative colitis. The diagnosis was the beginning of our journey but the care he and we as a family have received from an excellent gp and experts in paediatric care has been fantastic. If the evangelina has a paediatric gasteroentrologist then go there otherwise look for the best in London. I cannot emphasise enough move to another gp if they don't help tomorrow. I wish you and your son well and lots of strength tomorrow. I'll be thinking of you

Ask for a referral for a gastro specialist outside of a hospital. Also I would start changing his diet and make sure you keep a food diary so you can track changes or lack there of. Should help you to get more answers faster

My ds was diagnosed with UC when he was 6. He was anaemic and suffered bloody diarrhea and pain. He hadn't lost weight. Lucky for us the GP thought he had cancer so we had a really swift referral for a colonoscopy and endoscopy. Bloods and calprotectin tests can only diagnose so much.

I feel for you. I remember that worry. He's fine now by the way. He just has medication every day and he's not had a relapse for years. I hope it'll be the same for your ds once you get a diagnosis.

You will have to go to your GP and insist on a referral and ask for an emergency endoscopy and colonoscopy. It is the only way to know what is going on, otherwise everyone is playing guessing games at your poor sons expense. Please don’t walk out of your next appointment until they agree to do both of these things. I hope he feels better soon.

Have a look at this video from ABC Australia the Catalyst science program
m.youtube.com/watch?v=f3iOlRUQkrw
And maybe spend some time as well on Nutritionfacts . There is a section on Crohn nutritionfacts.org/topics/crohns-disease/

It took 2 years for me to finally get a diagnosis of Crohn's disease. Like your son I has raised calprotectin but not sky high. Had the usual colonoscopies, mri etc. The only thing that found it was a tiny pill camera that you swallow and videos the entire digestive tract.
Keep fighting!

I’m not saying this to upset you but it took over 20 years for my brother’s problems to finally be diagnosed as Chron’s. Just keep fighting and you’ll get there x

Ask to see paediatric gastroenterologist - go in via A&E and stand your ground

Good luck at the GP today. It will mean the world to your son to see you fight for him.

Be bold.

Does your son suffer from asthma, psoriasis or any other auto immune problems?

Thanks again for the replies and advice. We have seen the GP and she agreed to urgent referral to the Evelina and has referred DS to Gastro team there. She recommended A&E as we have done 24 hours of antibiotics and the abscess is getting bigger. She supported us going to the Evelina A&E and suggested another 24 hours of double the dose of antibiotics to see if it makes a difference and if it doesn't then we have a better case for A&E. She done me the form for fecal calprotectin test also. I got her to print me out DS's blood results from December so I can take those to the Evelina. His ESR level was 21 (normal range is 1-10) so not sure if that will help. Also WBC slightly high as are platelets -597 (normal 140-400) But he is anaemic. So I'm going to keep an eye on him throughout today and decide what to do tomorrow (or before if he deteriorates) Tomake matters worse I have a terrible cold and headache and feel so weak and achy.....there's been a bad virus going around at work. But I need to stay strong and carry on for DS bless him xx

Has he had a colonoscopy? Everything you said sounds like crohns and so many people who have crohns always say nothing shows up in bloods. I have crohns my self and sat in a&e now with awful pains and once again nothing has shown up in bloods even though I've had diaorreah for 10 days straight and my medication is doing nothing. Ask the consultant to do a colonoscopy.

Don’t wait OP. Go now. Even if all that happens is they review and say “try longer with antibiotics”, at least they will have seen and documented the size of the abscess, which will make further treatment faster.
Also, if you wait and he becomes really poorly, you’re not going to be able to get to the hospital of your choice.

So glad your GP was supportive, you’re on your way to getting proper help for your son now.

Keep chasing that referral, make sure it gets typed and sent. Chase the hospital for an appointment - be polite and explain how distressed he is.

Keeping all fingers crossed he gets a proper diagnosis and treatment soon.

Well done today. Now off to A&E with you! (and since it’s a distance away, go with an overnight bag...)

His ESR level was 21 (normal range is 1-10) so not sure if that will help.

It should help. It's indicative of a strong inflammatory response somewhere. By the way, the symptoms of Chron's and UC are similar enough so that only a colonoscopy can differentiate between the two.

Good luck.

I’ve not read the whole thread but wanted to let you know that a good friend of mine son has just been diagnosed with Crohn’s disease. He is now 17 and it was eventually diagnosed after an endoscopy and colonoscopy. He also kept getting anal abscesses.

Hope you get a diagnosis soon

Evelina are a great hospital you should get some answers there, I would highly recommend an allergist as well everyone thought I had chrons for 10 years but no medicine helped it, was a food allergy and mast cell issues all along

Glad to hear the update. I think it's unlikely that double dose oral antibiotics will help to be honest. If you do decide to go to a and e tomorrow (or today?) then best to go as early in the day as you can. 6pm til 8pm is busiest time,and specialist paeds gastro services will only be there until 5pm usually.

Did the GP give you a referral letter print out so you can have a copy to take with? Often they do the letters at lunchtime so you could try ringing gp reception and asking for a copy to be printed out for you as soon as one is ready, then you've got something to hand to a and e which will help you be taken more seriously.

In either case, as soon as you end up in front of the paeds gastro team they will take it very seriously and you'll get good care I expect. Just trying to get to them as soon as possible is the important thing. You don't want to delay and need extra treatment that may not have been necessary if no delay.

When you get to a and e do not leave the hospital until you have seen a paeds gastro registrar or consultant. Do not let a and e fob you off! Good luck op and hope both you and your son feel better soon

Other than the tummy issues etc is your son feeling unwell? Temp at all? If so you need to go to a and e today as will be the infection from the abscess making him feel poorly, if that's the case they would lance it today and he will much better with it gone, good luck :( can't imagine how awful this must be for you

The strong antibiotics could be making his guts worse. Might be worth giving him a probiotic. I take acidophilus and have Crohn's and it does seem to help

My son has been under the gastro team at the Evalina and they are quite literally the best of the best.

It will get better from here.

Sorry he has to suffer for so long before this.
Good luck.

Try giving him a daily dose of Kier. Look on the Chuckling Goats website. Amazing stuff at sorting out gut problems and won't do any harm. Good luck to the poor little chap.

Delurking.

For the love of God! Take your ds to a&e and demand that abscess is lanced. Absolutely appalling how blaze the GP is being.

ESR of 21 can be raised just with anaemia but with the other symptoms and the raised platelet count this is highly suggestive of inflammatory bowel disease in this case much more likely Crohns disease than ulcerative colitis because if the abscesses. What was the Hb and the MCV and did they do a CRP and iron levels?.
The faecal calprotectin will help but they can take up to 2 weeks to come back and occasionally you can get a false negative. If the abscess gets any bigger just take him to the A and E at the Evelina or Chelsea and Westminster (Royal London also have good peads gastro)and they will surgically drain it. This probably needs doing before they do the colonoscopy anyway as unless it settles taking the bowel prep will be a misery.
Good luck

It is so difficult to see your child in pain I know exactly what your going through, it impacts on every single part of your life and is so very difficult for everyone especially your ds. Don’t forget to take care of yourself also x