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 :(

My son was similar, the doctors kept telling me he had fast transit, wasn't coeliac etc. It was only when I refused to leave the doctors room without them doing something (anything - we were 2 years in then) that they went in with a camera and lo and behold coeliac !!

I'd tried to take gluten out if his diet but I hadn't - I'd forgotten all the hidden gluten.

Also, I know you have tried a gluten free diet but did you try it for long enough and are you really certain that you removed all gluten? My understanding is that it while take some time for the gut to heal.

How long did you cut out each of the food groups for?

Bless him that sounds absolutely horrendous! You must be so stressed and angry too.

Hope they take you seriously soon.

So sorry to hear you and you're DS are suffering like this OP - hope you get this sorted soon.

Insist on a stool sample call fecal calprotectin. It measures inflammatory markers in stool. It will give s much better indication than a blood test and avoid a colonoscopy.
I have crohns and my son had symptoms last summer, it was so hard to get a gp to agree to this test I had to refuse to leave the surgery until the gp agreed he could have (advised my my gastroenterologist that DS MUST have this test).
Abcesses / fistulas are common in Crohn's disease.

How I feel for your poor son. My daughter also had bowel problems. For her it was chronic constipation which bloated her stomach and legs leading to dreadful bullying issues because she was accused of being obese - not so.

When she was 12 we found out that she was allergic to dairy, eggs and soya so agree with other posters and would suggest that you keep a diary to find out if there is anything in your son's diet which exacerbates the problem, because dairy allergies can cause diarrhoea also and sadly, it still seems to be very misunderstood by the medical profession. Poor kid, he should definitely not have to go through suffering from anal abcesses, let alone the discomfort of passing watery stools and the dehydration that causes.

Could you ask your GP for food intolerance test. If not available on the NHS, then one can be purchased from York ~Test Laboratories which pin point certain food intolerances. Although it was expensive and meant having to do a pin-prick test, it was worth it. We did this and once armed with the information, we were able to ask for a referral to a dietician and then the diagnosis from a paediatric gastronenterologist followed. In my daughter's case however, it was an allergy - and she still suffers from it but symptoms have been managed by removing dairy from her diet. Good luck, OP.

Sorry for all typos

I work in Theatre and have done for 20 year's. It is not common for a child to have an anal abscess

In addition to what others are saying, fast transit bowel is like a viscious circle. The faster the food travels through the bowel, the more irritated the bowel becomes so it gets rid of food faster. You often see mucous surrounding poo as the bowel tried to protect its surface.
Anal abcesses are more likely in that situation too and once someone has had one of those they are prone to further ones. If it does not heal it is more likely to become infected or may actually be because it is a tract called a fistula.
Your poor little boy. Have they done any scans? I think I would be asking for a referral to a children's hospital where they will have pediatric gastric and bowel experts.

Your poor son. My friend’s husband went through similar with anal abscesses and was eventually diagnosed with Crohn’s but it took a long time to eventually get the diagnosis. Hope you get some answers soon.

Thank you all so much for your replies x. We are in London and under Greenwich & Lewisham Trust. I'm going to ask to be referred to the Evelina Children's Hospital at St. Thomas' in London. His abscess is on the opposite side to the original one which still hasn't healed. Maybe I need to be more strict with going gluten free? Just so mind boggled with all the research I've done and don't know where to turn or what to try next. I was researching Fodmap this morning and felt quite positive about trying it out until I noticed the abscess :( I work for a GP who said my little boy needs a scope but the consultant we see doesn't agree. That's all we want.....just a scope to either diagnose or rule out IBD. We went away for New Year and I spent most of my time in the toilet with DS.....even a lady in the neighbouring toilet cubicle to DS felt sorry for him and mentioned crohns

Not even had a scan.....just bloods

I understand it's frustrating and really worrying to see your son like this.

And clearly, it's right that the hospital take another look at things given his continuing symptoms and recurrence of the abscess. Obviously a lot depends on how the hospital/Dr's have explained things/made you feel- but they may well have taken you seriously. There are various things it could be- inflammatory bowel disease or chrohn's are possibility. But fast gastric transit is in that differential diagnosis, I'm afraid. As a PP said, it is a condition which can and does present with symptoms like you son's. And can make people quite ill.

I think it's worthwhile asking if further tests now indicated and take things from there. Fingers crossed things improve for your DS, good luck to you both.

Also re. the anaemia.....we was prescribed Ayton but it made his diarrhoea 10 times worse resulting in him actually bleeding from his bum so I had to stop it. So he currently isn't having any iron replacement therapy at all so is still anaemic. Again no help from hospital regarding this

Sytron not Aytron

Insist on a referral to The Evelina or GOSH. You have your GP’s backing which helps. If you can, I’d go into the hospital’s PALS office In person and ask for their help. They are usuy very busy and calls/emails can go unanswered.

Couldn’t read and run OP.

I have Crohn’s disease, and what your son is experiencing sounds very like it. Obviously I’m not a medical expert, but I have experienced a lot of the same.

You need to insist on a scope. They aren’t pleasant, but you may find a surgeon who will do it under general anaesthetic if your son would be more comfortable with it. I had to swap hospitals to get a surgeon to do it under GA, was too painful for me to do it with Just sedation, tried a few times.

The only way they can diagnose Crohn’s is through a scope. CRP etc can only indicate that it is a possibility. They need to take samples and physically see inside to get a proper diagnosis.

I feel for him, those issues he’s having are horrible. IBD is a bitch to get a diagnosis for, they’ll try and rule everything else out first.

Can you get him to an out of hours doc? Ime, out of hours docs refer you for the scope quicker. If he’s bad at the time, they could even admit him and do it within a few days. That’s what happened with me 7 years ago and what is currently happening with my sister, unfortunately. She is like your son, they have said it’s ibs etc only when she went to out of hours did she get referred for a scope.

I hope he is more comfortable soon, sending best wishes to him

Poor poor boy. I hope you get some answers soon OP

Thank you all xxx

Seriously I know you said you've tried to cut gluten out but without meaning to sound harsh did you really cut it out of everything? I know how hard it is, you need to be consistent for a few weeks until you'll see a real difference- you've got nothing to lose to try

Thank you Unstuck....I'll try it again x

Your poor son. Both my boys had anal abscesses, taken very seriously when noticed by an eagle eyed friend (who was a midwife), but mostly because my kids were three and five weeks old respectively. It decided dh and I that there wasn’t going to be a third child as we couldn’t go through it again!

I don’t know much about his other problems, but just wanted to send massive sympathy and best wishes. We were lucky: our gp was v straightforward - he said this kind of thing was completely outside his experience and pushed hard for a decent response from the local hospital. Pals complaint?

Sarah did they find out why they had abscesses? X

Does he have ulcers in his mouth? My mouth was full of them. My Crohn's was diagnosed after a sigmoidoscopy, colonoscopy and barium swallow. There is no way it can be diagnosed through a blood test. I had an anal access and it was horrendous. I didn't have to have it operated on but had IV antibiotics in hospital for a week.

Can I just ask.....and please don't judge....but sometimes I feel like I'm losing the plot in that I'm finding it hard to cope with everything, with work, DS illness, keeping house, 2 teens with their issues etc.....just feels like too much sometimes. Today I was crying and shaking when I discovered DS may have analysis abscess again (not in front of him of course) and had to go to DH and ask him for help to calm down....is this a normal reaction? Feeling so rubbish :( xx