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 :(

I'm a bit surprised that it's this hard for you to get a colonoscopy ordered. It's a pretty simple procedure, you're in and out in an hour. My gastroenterologist does them right in his office.

It works differently in the UK

MissConduct in the UK Colonoscopy is done in an Endoscopy unit in the hospital.

missconduct For a full colonoscopy in the U.K you need to fast for 24hrs and drink a clear out prep so the bowel is clean for the camera.

Not sure if this helps, other than to reassure a little, but my DD had the same and the specialist said she would simply grow out of it. I was sceptical but thankfully, after about 12-18 months, she did and has been 100% for the 2 years since then. Wishing you luck and recovery.

Hi. Sorry for quick response but it's DS bedtime. Keep pushing with your GP/consultant. I'm coeliac and it took 8 long years to get diagnosed, they kept saying I had IBS. I did see someone say try a gluten free diet, be careful 'trying' anything as they'll want your son to resume his normal diet to get a diagnosis. Good luck, hope your son feels better soon.

missconduct For a full colonoscopy in the U.K you need to fast for 24hrs and drink a clear out prep so the bowel is clean for the camera

Yes, I'm quite aware of the prep requirement. I've had UC for over 10 years so I now get an annual colonoscopy and have to do the same prep procedure every time. I'm also an RN. I'm not sure why the prep required limits the availability of the procedure.

We do them in a hospital endoscopy units as well in the US, but lots of group gastroenterology practices are setup to do them, usually at a much lower cost than the hospital.

My partner was having stomach problems 9yrs in fact he would be on the toilet all the time either couldn’t go or couldn’t stop assuming he had ibs went Doctors had test scans everything kept saying there was an inflammation but couldn’t locate it they also said he had an abscess at the bottom of his spine antibiotics given but never got better he would shuffle around rather than walk was all hunched up one day I woke up An he was literally grey I so took him the hospital where he was kept In an more test were carried they suggested may be crohns but couldn’t tell so they wanted to operate to see about draining the abscess turns out he had a perforated bowel that had attached to his spine An he had mild crohns he had a stoma and has been doing so well he has been in the best of health since keep fighting for test scans my partner was in agony for years An was constantly fobbed off sorry if this scared you but I hope of any sounds similar ask for a second opinion

Missconduct - we don't really have consultant 'offices' like you do. Most specialists will have an outpatients clinic in hospital and you'd then be given an appointment to come back for a scope.

OP good luck with getting sorted. I don't have much to add, except be calmly persistent. It may be it all resolves, but at the moment it's getting worse, so you need answers and an agreed treatment plan (or at least a "what to do if it's not getting better" plan).

I just want to reiterate about the fecal calprotectin test. I had been having abdominal pains a couple of years ago and vomiting. No one took me seriously until the results of that test came back. It indicated crohns and I was taken seriously from that point on.

I'm guessing the anal abcess is linked to the diahhorea. It's very rough and acidic on the skin of the bottom. TBH I'm surprised that he's not been hospitalised with malnutrition after months of diahorrea.

Ok, I stand corrected. But this is months. I'm amazed the kid can still stand.

Apologies if already been mentioned but I haven't read all the comments, def a colonoscopy ive seen that mentioned but also equally as important, see an allergist. Depending where you are in the UK there is an excellent allergist called Dr Adrian Morris in Surrey and costs about 250 for an hour. I had similar symptoms to your son and still do infact, including in the past 4 operations for abscesses just down from my coxcyx , same thing with thinking was an inflammotory bowel disease as the abscesses can be related etc, turns out in my case was a severe sulphite allergy ( preservative sodium metabisulphite /sulphur dioxide, pretty much in every thing you can think of even medicine , any more packaged food, fish are sprayed with sulphur dioxide to keep them fresh, same with non organic salad etc) and also histamine intolerance. Since then have been diagnosed as having mast cell activation syndrome which is where my body sees every thing as a threat and makes me incredibly ill. I can be fine one minute have one bite of something or one sip of a drink and then have diarhhea for 8 hours with no warning. But I would never have known this if I didn't pay to see a allergist and have skin prick tests performed (to which the sulphite drop on my skin went into a massive welt and my arm swelled up) hope this helps somehow with a few more things to look into

My son had the same for 2.5 years of his 3 year old life. He’s intolerant to dairy and egg. I highly recommend cutting these 1 at a time (for 2 weeks) and then keeping out of diet and moving onto other well known allergen/intolerant/sensitivities. Others are gluten, soy, nuts, celery, mustard. Lots of kids have multiples. Your poor little guy. We delayed potty training as I couldn’t face him failing when he could hardly contain his bowels. He was in lots of pain as well. We’ve been on normal poops for 4 months now and it’s been amazing.
NHS have not been helpful as they are only able to cope with ‘allergies’ even though the outcome of intolerances and sensitivities to foods can be just as bad (not taking into account anaphylactic responses which are just a nightmare situation I wouldn’t wish on anyone, let alone a child).
If you want more info please pm me, it’s been a long road of self learning for me and I’m happy to share.
I would say that if and when your sons tummy health stabilises, don’t try to reintroduce foods until at least 6 months as it takes that long for your tummy to heal from all that inflammation and damage. Dieticians on the NHS wanted us to try after only 3 months which is madness. These are children with delicate tummy’s, and must be treated so carefully.
Big hug to you and your son, keep fighting

Agree also with viperama
Baby is milk intolerant and had similar symptoms but took a year to figure these all out, my bet would be somehow somewhere along the line it's food related, wishing you all the best with it all i really hope it gets sorted

I haven’t read all the posts but we were robbed off for years by both local hospitals and in the end took the girls out of area. They have a condition called EGID, again which would need a scope to diagnose. I’ve heard good stuff about st thomas’ and royal London so here’s hoping you get answers soon.

Sorry I meant to say try food removal trials for two months each not two weeks!

Can't offer any advice but just want to wish you and your son the best of luck to getting to the bottom of this (no pun intended!). It's sounds just awful and he must be so brave to put up with the pain and the embarrassment I guess. Hard on you too, that goes without saying. I have an 8yo (and 5yo) and I honestly cant imagine what it would be like to see them in pain like this.
Best of luck. I'll keep following to hopefully see some resolutions soon x

I have lots of experience with this and my heart breaks for your poor boy and the stress you're going through.

No expert but from what we have been through I strongly believe that two anal abscesses, chronic D and loss of position on centile charts all scream the possibility of IBD or serious food allergies (or both) and the kid needs a colonoscopy and calprotectin testing.

I strongly recommend asking for a referral to Dr John Fell at Chelsea and Westminster Hospital. The man is an absolute genius (very kind too) and has looked after my DS for the last 15 years.

Not sure if it's true but I heard you can choose these days. We certainly aren't what one would describe as being "in area" for C&W....

Good luck. I'm thinking of you x

I really feel for you . My grandson has the opposite constipation for 3 1/2 years and now has to have daily washouts. But no diagnosis . It’s horrible .we also are contemplating going private .

Thank you all again....so much advice and wisdom, all of which I will take on board. I have just emailed the school to let them know what's happening and asked them to write us a letter of support as it's clearly affecting his education. I'll let you know how we get on at doctor's tomorrow morning. Thank you again xx

After the birth of my first son I suddenly started with horrific stomach pains after eating (so bad it caused me to vomit) and I had to rush to the bathroom as I'd suddenly get diarrhea. This would continue for at least another 10 times during each day to the point I was also passing blood. I got a referral to a specialist that did a colonoscopy (for the large bowel) and also swallowing a small camera to inspect the small bowel. I was advised to follow the **fodmaps diet to track what foods caused flare ups. For me they found ulcers in my small intestine that bleed, gluten causes me alot of pain and diarrhea.

www.ibsdiets.org/fodmap-diet. This website will show you what should help your son's diet for his health and what will make him worse

If you are an inpatient, you can REFUSE discharge!

My little sister had a head injury and a spinal injury as a small child, my mum is so thankful to the nurse that ran up to her and told her this fact. Within an hour of that, a doctor came to tell my mum that she could take my little sister home now! Just keep an eye out for xxx and yyy and zzz. My mother declined to take her home. Within the next 24 hrs my sister was pretty poorly and would have just had to come back... not leaving meant she was in a better place to be unwell in!

It’s a shame you weren’t aware as maybe you’d have refused to leave until a doctor came to tell you why they thought he was ready and fit to leave.

Good luck! I’ll be thinking of you both xx

Hi sorry for late post and I haven't read all comments so may be repeating or may not be relevant..
I had years of bowel problems, not putting on weight, tiredness, lack of concentration etc as a child and kept getting dismissed. When I was 17 I got rushed in to have my appendix removed and during the op they found i had Crohn's and my intestine was so inflamed it was squeezing my appendix and it was about to bust. Ended up having a big resection and my appendix out.
I have been through really bad flares yet my inflammatory markers (blood amd stool samples)have not shown up as raised as you would expect. I would push for a scan and colonoscopy if the problems continue. In the meantime keep ds well hydrated with dioralyte too if required. Keep a food diary to see if anything makes it worse and check diarrhoea for blood, mucus and excess fatty deposits. Good luck and keep pushing for tests and answers xx