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 :(

[ittakes2]

Also can I add, my son was checked for inflammatory bowel disease, crohns and pancreatis through a stool sample.

[brownpurse]

I have ulcerative colitis. Your son's symptoms sound as though it is very likely he could have this or Chrons. They are hateful illnesses but so much relief can be given with the right medication. Diagnosis often takes a while. It is not normal for a child to have an anal abscess .Many people with Crohns get them and bowel disease often makes you anemic. Poor little boy. Keep harrassing your doctor.Maybe have a look on the Chrons and colitis website? It may well not be inflammatory bowel disease but I would want it ruled out

[scotchpie]

Anemia doesn't just affect coeliac, I have UC & I'm very often anaemic. He needs a colonoscopy or flexi sigmoidoscopy at least to determine if IBD.

I agree with contacting pals,your little boy shouldn't have to put up with this and as a parent it's heartbreaking seeing them suffer.

Ask for s referral to Gastro Consultant x

[MissConductUS]

Sorry, that should have been " Even then, a low CRP doesn't rule out IBD.

Have they tried giving him a short course of prednisone to see if that provides relief? That would strongly suggest IBD if it does. It would also give the lad a break for a bit.

[ILoveMyMonkey]

Your poor son.

They did a blood test for coeliac and said it wasn't that

In terms of this, I had numerous blood tests for coeliac and they were always negative but I cut gluten out in last ditch desperation and my daily diarrhea stopped within a week and I've never felt better, he might not be coeliac but have an intolerance.

Obviously the hospital / Dr should be doing everything they can to solve what's going on but if you don't get anywhere then I would switch to a gluten free diet and see if things improve (also keep dairy in mind as my sil found that dairy makes her ill despite no diagnosis).

[Msqueen33]

If he does have coeliac he’d need gluten cutting out and you would have to be very aware of cross contamination as even a crumb of gluten can cause a lot of pain. Ask for an endoscopy and back to paediatric gastroenterologist. Scream, push, moan, shout. Your son needs you as his voice. Good luck and I really hope you feel the answers. Maybe the gaps diet or foodmap diet is something to look at.

[MrsEl]

What hospital is he under, OP?

[Ostagazuzulum]

Have you considered a low fodmap diet? It wont solve the problem but might ease it until poor lad gets a proper diagnosis.
Good luck, I hope you get some answers and treatment soon.

[squiglyline]

@SoCockneyItHurts
Has your DS been given iron tablets or iron soloution to take for the anaemia? If he has make sure he has it with orange juice, the vitamin c helps the body absorb the iron. If he’s not been given anything make sure he gets it. Iron also can cause constipation so might help harden his stools a bit.
You can also ask your gp to refer to you another doctor as an emergency appointment then they need to see you within 4 weeks of you seeing your gp. You could also track down the phone number for the Doctors receptionist/assistant and they can put you in the appointment book there and then. Keep calling them and persisting them until they are saying your name in their sleep and you will be seen quickly and hopefully get it sorted. Tell them your not leaving until you have a date for x y and z to be done!
Good luck and hope your ds gets better soon x

[Billben]

My money is on UC or Crohn’s. You need to ask for a colonoscopy or a flexible sigmoidoscopy. My Crohn’s got diagnosed 5 years ago through a colonoscopy after having an anorectal fistula that had abscessed and burst. Since then I’ve had 2 more abscessed fistulas that needed operating on. Plus I have 4 more fistula tracts around my rectum and bum cheek that they have found after doing an MRI. You need to insist they do more than just a blood test and stool sample because I tell you, anal abscesses are extremely painful even for grown ups.
I know you said that the abscess was lanced, but if they haven’t put a seton in for example then if it is a fistula then it could just simply refill again.
I often sit in a warm shallow bath with Epsom salts in and that seems to help both the healing and the bringing of the abscess to the surface.
Also insist on a colorectal surgeon (preferably one who has IBD experience) and not just a regular surgeon. Do not be fobbed off with the excuse of boys getting anal abscesses bullhsit either.

[NaughtyNoraTheNamechanger]

Poor kid. That must be absolutely awful.

He really needs to be investigated more thoroughly!

[MissConductUS]

Off topic a bit, but since there are so many UC sufferers here, has anyone tried Entyvio? I started it last August. It took a while, but it's worked fabulously. I am asymptomatic now, in complete remission for the first time in 14 years.

OP, if it is IBD there are really good treatments for it now that didn't exist a few years ago, so have hope.

[ItsOnlyAGameshow]

Ask for a faecal calprotectin test to be done. It looks for IBD.

[BlackeyedSusan]

oh gosh, poor ds and poor al of you dealing with it all. we have a similar but different situation in that dd is poorly and this is stopping her attending school but hospital cannot do much more, though there is a medical reason for some of the delay.

[JaneEyre70]

I'd be paying for a private consultation with a paed gastro specialist. This has been going on far too long, poor lad and you must be out of your mind with worry.

[Fortybingowings]

So sorry to hear about this, poor little thing. Agree with the above. He needs a paeds gastroenterologist and a thorough work up. Sound like inflammatory bowel disease rather than coeliac, probably Crohns. If you don’t get anywhere with Hospital over the weekend? Ask for an emergency GP appt first thing Monday. Ask GP to admit to paediatrics and ask for inpatient investigations.

[Fortybingowings]

Sorry for crap grammar!

[ZigZagIntoTheBlue]

Poor thing, I've got crohn's and was diagnosed by colonoscopy. If it is another abcess I wonder if the hospital would do a colonoscopy at the same time as lancing it to avoid putting him under twice. Unfortunately some docs refuse to accept children can have crohn's but they definitely can. Join some support groups on Facebook and people there will tell you more info about how it's presented in their children. Also I'd advise you requesting a copy of every set of blood results he has, it can show trends and sometimes docs say they're fine when actually they're over the upper limit, but not massively over iykwim.
Good luck, I hope you get some answers

[brownelephant]

agree with everyone
wrt coeliacs, the blood test is only an indicator and can be false negative.
yes push for referral to a specialist children's hospital.

for perspective wrt going private, this would be around 200£ for initial consultation but all tests are separate. biopsy easy a couple of thousands, simple blood test 200£.

good luck hopefully dc improves soon!

[Penfold007]

I'm going through similar with my 80 year old parent. The doctors just won't take is seriously enough. They've now said it's colitis but not said how we manage it. I'm so sick of clean up poonamis. I'm another one suggesting that you request a referral to a children's hospital.

[Billben]

MissConductUs

I haven’t tried Entivyo but as soon as I’ve had yet another operation to drain my current anorectal abscess (seeing the surgeon next week to discuss when he can fit me in), I’ll be put on Infliximab and azathriopine to try to close the 4 fistula tracts before they have a chance of abscessing. Hope I’ll do well on it too.

[LostMyBaubles]

I'm going to try and message you op.

Similiar with my 7yr old (started when he was 3)

[JustDanceAddict]

That sounds horrendous. Surely he needs a biopsy or colonoscopy at least to check what’s going on. DS has suferred from diahorrea since he was a toddler really and has had some tests, but nothing has ever shown up (inc coeliac). Thankfully it’s nowhere near your DS’s situation, but I’m not sure that there isn’t some underlying gut issue, so am still keeping an eye on things.

[youarenotkiddingme]

I had similar as a child, underweight but with bloated belly and also anal abscesses and fistulas.

I was tested for coeliacs and had cameras up and also down. Barium meal as well.

Also they sent sample of skin to histology with abscess as suspected an IBD - ask if they did this with your ds.

Anyway eventually I put myself GF (well mostly WF) and it made such a difference.

But if you've tried that I'd carry on going to hospital. Can school get the school nurse involved to support if they are concerned?

[Dungeondragon15]

There is obviously something wrong and as the consultant you have seen is unable to find the cause you need to been seen by another consultant and hospital.