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 :(

What a nightmare - so sorry to hear this. I had a similar story and had to fight to get a Crohns diagnosis. Sorry haven’t had chance to RtFT but defiantly get PALS involved and would thoroughly recommended seeing a good acupuncturist for dietary advice and acupressure (no needles)
If you are london based I can recommend.
Contact crohns and colitis society for dietary advice and follow it anyway (low residue diet) will make any bowel movement as comfortable as possible.
Lots of high nutrition very easy to digest food is your friend - soup particularly and root veg will really help.
Just sending you best wishes and fingers crossed for the right help.
X

We have an extensive family history of coeliac disease and 2nd son often had bad stomach when a teenager. We went private and blood test said not Coeliac disease, but IBS (vague and pretty useless diagnosis). However as an adult now he finds that cutting out gluten completely does improve his problem when it flares up, though he does not need to do it all the time.

By the way my mother was medically diagnosed coeliac but it did not really take hold until she was middle-aged. I think that if she had known earlier and had taken care of her diet she would have had less problems.
Although I know that some coeliacs do need to completely eliminate gluten, I firmly believe that other people have a series of flare ups over time until they eventually get the full disease.

I'm going to go a bit out on a limb here as someone who has IBS and say it doesn't last for that length of time. There are flare ups where the instant you swallow it's coming out, but generally, it's a mixture of being too hard or alternatively too explosive. It's not diarrohea for weeks on end. It might well be fast gut syndrome but there must be some kind of way of slowing it down. Instead of pursuing an alternative name for it, start demanding a treatment.

I have colitis and was diagnosed shortly after the birth of my second child. The consultant I saw said that sometimes the hormone changes during pregnancy can really bring this condition on (in terms of severity, not actually causing it). I ended up being seen privately because waiting on the NHS was going to take months and the GP I saw was very dismissive. I was terrified because we lost my Grandma to bowel cancer a couple of years previously and the symptoms are very similar. Of course I know that bowel cancer was not the most likely diagnosis for a 20-something woman, but I was about a week postpartum and out of my mind with worry, and she basically told me it was piles and to go away. So I went and saw a private doctor and had a diagnosis within two weeks.

I hope you get some answers for your poor DS soon OP, it must be awful for you all

I'm going to go a bit out on a limb here as someone who has IBS and say it doesn't last for that length of time. There are flare ups where the instant you swallow it's coming out, but generally, it's a mixture of being too hard or alternatively too explosive. It's not diarrohea for weeks on end.

It is just diarrhoea for weeks on end for some people.

The symptoms that you describe are exactly how my mil suffers with Crohns

Cheerybath coeliacs absolutely must avoid gluten permanently, you're theory is dangerous and a straight route to bowel cancer and osteoporosis and people like you areone of the reasons my daughter's life is often so difficult. No gluten forever full stop no remission no cure.

So cockney - abscesses were discovered just prior to bursting as they came to a sudden head and obviously they were both nappy wearers. They had saucerisation ops (one son had two ops) and then four months of heavy duty antibiotics which was grim, but finally solved them however, they had no underlying intolerance or medical issue. Really hope that you get some answers x

Take him to A an E for goodness sakes and make a fuss so they refer you urgently.

I went through a very similar nightmare with my son. same tests same 'diagnosis'. I wanted him tested for milk allergy (already had other known allergies which are severe etc) but the milk tests came back negative. with no help and no improvement I eventually cut dairy out of his diet as I just had a feeling so wanted to see if it would make a difference - guess what, it cleared up! Requested an apointment with a dietician who explained you can be allergic to things that only effect the GI track so thats why it didnt show up on blood or stool tests. The damage its doing to his insides could explain the slightly raised inflamation markers on blood tests. Its been a few years now and the improvement to his health has been amazing. Perhaps worth altering diet to see if you can pin point a trigger and getting a dieticians opinion - sounds like youve nothing to loose!

Sounds like crohns, need google it & check not getting any other symptoms of it. Can always ask for 2nd opinion. If I was struggling like this I think I would try get colonoscopy privately but you shouldn’t need to.

@ceciliabartolli A&E won’t be able to do anything as this is an ongoing problem. A&E do not have access to specialist tests and referrals, they are only set up to deal with acute emergencies.

Contacting the hospital’s PALS team for advice and asking the GP for a referral to a different paediatrician who specialises in gastroenterology are probably the best options.

Please check out the health restore website. If it is a parasite a consultation will identify it. I would defo give it a try, he helped me heal my body through natural remedies. It won't help to try, even a call to speak with them will give you an indication if they can help. I truly hope you find the solution so that your son gets his health back 💐

How awful for you and your DS. We had a similar experience, DS developed severe diarrhoea age 3 after a stomach upset. We saw a private paediatric gastroenterologist for 18 months, DS was tested for Crohns, coeliac etc, eventually had a colonoscopy and endoscopy. No improvement and like you we were v worried and frustrated. He wasn’t growing and was losing weight. We were eventually recommended an NHS specialist by a friend. She immediately arranged some non invasive breath tests and we discovered DS has a fructose intolerance. So frustrating that this could have been picked up 18 months earlier - the private doctor didn’t test for it. I feel for you as it’s a massive worry. Agree with others that a different specialist would be the best thing now. Good luck.

Your poor DS :( This makes me so cross as bowel problems seem so slow to be diagnosed properly. Through my own personal experience, after my son was born, I suffered badly from diarrhoea and toilet urgency. I didn’t go out anywhere for fear of not taking it to a toilet in time . I repeatedly went back to my doctor saying that it wasn’t right and repeatedly they prescribed me anti-diarrhoea medication which did nothing. Eventually they did a stool sample which came back showing an infection so they prescribed antibiotics . Looking back this was the worst thing they could have done considering my later diagnosis. After repeatedly going to the doctor they eventually referred me to a gastroenterologist who was amazing . On my first appointment they took bloods and sent me for a colonoscopy which showed that my colon was ulcerated and diagnosed ulcerative colitis. It was an intensely long battle to get to that point. My advice is to not give up ... doctors are too quick to prescribe medication which actually makes the condition worse or don’t take you seriously... in my experience. If anything limit any medication especially avoiding antibiotics and anti-inflammatory medication as they just worsen the condition if it is an inflammatory bowel disease.
Good luck.

Coeliac isn’t diagnosed from just a blood test, a biopsy has to be taken of the gut and in your sons case, under another GA. insist that he is seen by a children’s specialist, it’s your right to be seen by who you want. Research online who is the best in your area, or anywhere in the UK for that matter, and ask to be referred to them. It is NOT normal for a child to have anal abscesses, I’ve never heard such rubbish. As others have said, try cutting things out of his diet, it sounds like a food intolerance to me. Wheat is a huge culprit. He’s not getting any goodness from anything he eats because he’s getting rid of it!

Your poor boy, i can only repeat similar experiences as PP and it makes life so difficult.

On a seperate note, after an infection my DC had similar symptoms for months and it finally improved using a more powerful potent probiotic powder (the kind in an amber jar you have to keep in the fridge not stuff on shop shelves). I think the illness had wiped out any good gut bacteria leaving no chance to heal and the gut/bowel just couldn't work properly.

Hi. It won't help diagnose anything, but possibly help with some symptoms in the meantime - look up low fodmap diet. I wish you all the best and hope you get some help soon for him.

I think it's all down to lack of funding, tbh. My ds had problem which could have been diagnosed by single ultra sound, which non of A&E doctors did. My ds's specialist hospital was amazed how long it took them to realise his malformation of his organs, which could have ended up with him with irreplaceable damage. At the specialist hospital, I have seen some parents with kids on the transplant list, which could have been prevented if the GP/Drs were more understanding and had more time or funds. Sad, but I think parents need to be pushy and "that parent", if you want any results.

I'm so sorry to hear of what your family is going through, I hope you get a resolution soon.
Something I don't think has been mentioned (not very many people know of but is common), is bile acid malabsorbtion or BAM for short.
I had issues for years, drs kept palming me off with IBS. I knew it wasn't as rushing to the loo sometimes 10 times in 2 hours.
My body overproduces bile and it can't cope and leaks into my bowel. I've finally got some relief now because I'm pregnant.
It is a similar condition to chrones.
I'm not sure if it is common in children but another condition to think of. Basically most food trigger it esp fruit/salad etc. Apparently white carbs are the best thing to ease it.
I had to have a sehcat scan, you have to swallow a slightly radioactive pill and have a scan a few hrs later and then again a week later.
I hope this helps in some way and I really hope you get answers soon. Lots of hugs x

Keep fighting and taking him to get referred. maybe going abroad where some countries might have better health service?

My friend was going through something similar just recently (although she's older) she was having lots of stomach pains and kept going to A&E, they first said there's nothing wrong, they then said she has IBS, so was given medication for it and had to cut out a lot of food that would give her pains.

She's currently in Italy, working there, was admitted to hospital with severe pains. They checked her thoroughly and did all sorts of tests that was not done in London, and diagnosed with gallbladder disease. Now taking medication for that and she's getting better, and also cutting a lot of food.

I hope your son gets diagnosed correctly soon!

Have they tested for H. Pylori infection?
DH had similar symptoms for months.

You said not quite bad enough to be Crohn's. Could it be ulcerative colitis or IBS? Can you afford a private consultation? If so, might be worth a shot.

My 6 year old has crowns, it started with constant dihorreah and then resulted very quickly in an abbcess, unfortunately you have to be the wheel that squeaks because like you I was told that it was nothing ect, eventually he ended up with sepsis which is not uncommon with crohns and we were finaly referred to a specialist hospital you are well within you rights and legally entitled to ask for a second opinion in a hospital of your choice which I did, unfortunately it does sound allot like perianal Crohn’s disease and the sooner he gets the relevant treatment the better, the fact his inflammatory markers were Elevated should be enough.. hope you get this sorted it is Very distressing!

I was diagnosed with ulcerstive colitis aged 20 after a few years of tummy issues being brushed off as 'IBS', then a few weeks of bloody loose stools after which the GP sent me straight to A&E. I needed blood & platelets in A&E and then 12 weeks in hospital having surgery etc...
It does sound like your son has IBD, rather than coeliacs or food issues, simply because of the fissures etc.
If you can request to go back in his notes and find the entry from the Doctor who thought he had crohns and needed referral etc. Work out the date beforehand etc...she obviously felt it was IBD.
If the absess gets bigger go to the A&E of the hospital you want him seen in, explain everything and ask for help in geting am urgent gastro referral. The symptoms are urgent at this point. Or go back to your GP tomorrow morning and insist on the referral you want.
The other option is to make a private appointment with your chosen specialist and after that ask to swap to the nhs list.
Good luck for your little one - its so hard when you are trying and not getting anywhere.