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 :(

[Cath2907]

Hope he is feeling better soon!

[bostonkremekrazy]

hope it goes ok for him!

[Vegecook]

Poor love. Hopefully, it's the start of things getting better

[thelastredwinegum]

Thinking of your DS today. I've always found the prep a lot worse than the colonoscopy.

[Bowerbird5]

Oh poor little lad. I had some of the tests but not the abscesses. If you cut out things from his diet how long did you do it as it needs at least a month to completely leave the system. I went off dairy for two months and got better turned out some morphine I had after an RTA triggered allergies/ intolerances. If I weaken ( last Saturday) and have something like cream on Apple and Rhubarb Crumble ( stupid) I get diarrhoea. Even the GP said he hadn't thought of that. He was kicking himself. I was sent for all sorts of horrible test. It did highlight a bowel condition in its early form that we hadn't suspected which means forewarned forearmed for the future but it is the dairy that causes the problems. I miss cheese 😞

[crabb]

Good luck today. I hope you get some clear answers soon.

[Scarydinosaurs]

Good luck today!

There is a great NACC group on FB that is worth joining if you get that diagnosis.

[SoCockneyItHurts]

Thank you xx well he's currently under GA having the procedure! So nerve wracking....I'll keep you all posted xxx

[SoCockneyItHurts]

Thank you xx well he's currently under GA having the procedure! So nerve wracking....I'll keep you all posted xxx

[HPandBaconSandwiches]

It’s good he’s gone in nice and early in the day. He’ll be back with you in no time for lots of cuddles.
Don’t worry if he’s very tearful at first, most children are after an anaesthetic, does funny things to the emotions.
Hope he recovers quickly and you get some answers before you go home.

[SoCockneyItHurts]

DS has been diagnosed with crohns of the large bowel. He'll be on a special milk only diet, Modulen, for 6 weeks, no solid food. He's not happy poor thing. It's all a bit overwhelming but I'm so relieved to finally have an answer and can hopefully get my little boy on the road to recovery xx

[SoCockneyItHurts]

DS has been diagnosed with crohns of the large bowel. He'll be on a special milk only diet, Modulen, for 6 weeks, no solid food. He's not happy poor thing. It's all a bit overwhelming but I'm so relieved to finally have an answer and can hopefully get my little boy on the road to recovery xx

[AnnaMagnani]

for you and your boy. Glad you have an answer.

When I first came on this thread I thought, it's fucking Crohn's FFS. Not a nice thing for him to have at all but at last he will have the chance to feel well and his abscesses to heal and for him to put on weight, and well, to have his life back.

First day of getting his life back.

[Manctart]

I have just read this whole thread and I am not surprised by this diagnosis at all as it sounds very similar to what I went through, also with Crohn's Disease. It's a crap thing to have but manageable and Modulen will definitely help in the short term. I would recommend making sure they are ice cold as the flavour is less offensive! There are lots of different meds to try now too, it's much better than even five or ten years ago. Well done to you for standing up for him and I really hope he starts to feel better soon

[MollyHuaCha]

Glad you have a diagnosis at last. Modulen has a nice taste and will give his bowel a chance to rest.

And just in case the Modulen doesn't help, bear it mind it is milk based. I have Crohn's and have casein intolerance too, so need a milk free meal replacement drink at times of flare up.

Get well soon OP's DS.

[jellybellywelly]

So glad you have a diagnosis, treatment and a helpful consultant. Have been thinking of you and your ds. X x x

[Gudgyx]

Glad you finally got a diagnosis OP! Hopefully you can be on your way to controlling it now. And DS will start to feel a bit better.

Did they say if it was abscesses or fistula on his bottom? I had 4 recto-vaginal fistula at one point and it was horrific. I highly recommend a pile cushion to sit on! Will make him more comfortable. I used mine for work, brought it to restaurants, a casino etc. It's currently being used by my cousin after horrific childbirth! Handy things.

I'm glad he is diagnosed, but you are at the start of a very long road. After the modulen, they will probably trial him on lots of medication to see what suits him best. But he will get there :) you have a lot of support here, but you are welcome to PM me also, as someone who has been there.

Search facebook too, lots of support out there for you and DS

[bostonkremekrazy]

So glad you have you answer. Well done tiger mum! (from a UC girl dx aged 21)

[Cornettoninja]

I'm really pleased that you both have a proper diagnosis at last

Your poor ds has been through so much, I really hope taking away the element of unknown helps to relieve some of the pressure that you both have been under.

Wishing you both good thoughts

[Sheeeesh]

Wishing your ds all the very best.

A diagnosis is positive. If it's any help to him Dynamo (magician) and President Eisenhower have Crohns so perfectly possible to still be awesome.

For now lots of love and looking after for him and you. You sound like a good team, the pair of you

[Backingvocals]

What an absolute ordeal. I am so sorry DS has had to go through all that trauma but a diagnosis is a big step forward. Wishing you all the best OP.

[QueenieMum]

Really pleased it went ok and you have a diagnosis AT LAST! You've been amazing So, really amazing. Take care of yourselves and I hope this is the beginning of a better chapter for DS.

[TinyPaws]

Sorry to hear that SoCo, thought it sounded like Crohn's from your descriptions, at least you have a diagnosis now so your son can get started on some treatment.