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 :(

[HPandBaconSandwiches]

So glad you’ve been back to update and your lovely DS is feeling so much better. Really hope the mess work and he can get a bit of normality back sometime soon. All the very best for the future going forward and massive well done to you for not giving up OP.

[NaughtyNoraTheNamechanger]

I too posted on this thread at the start. I'm so pleased you now have answers (sometimes just having that is a relief in a way that you know it can be treated). So glad to hear your DS is doing well!!

[Itscliffmas]

Op I remember reading your thread and thinking IBD, so glad you've got diagnosis.
I have Crohn's too, diagnosed 3.5 years ago. I remember that relief of being diagnosed and panic over the side effects to medication (I take Aza and Humira) the medication worked wonders for me and I was symptom free after a few months.
i've also been through the denial stage
My GP and IBD team have been amazing, they monitor my bloods regularly and adjusted my medication when I went into a flare last year.
It is scary but it's not all doom and gloom, there's so much support out there (if you're on Facebook I can recommend a few groups) and there's been a number of new medications come out since my diagnosis, So I'm pretty confident that if my medication stops working for whatever reason then my IBD team will find another that will (same for your DS)

[brownelephant]

I'm so pleased to hear that you have finally got a diagnosis and that he is doing so well with his first treatment!
hope he will keep doing well. best wishes

[YorkshirePuddingsGreatestFan]

Ignore that message, I'd not read all the pages - sorry!

Pleased you have a diagnosis now and hope he continues to get better.

[YorkshirePuddingsGreatestFan]

Have you put a stool sample in for testing of faecal calprotectin? That's a test to show if there is inflammation inside the gut and it's more reliable than the blood test.

[Cheby]

I posted on your thread at the start, I’m glad you’ve got a diagnosis and are getting somewhere, but I’m sorry it’s not easily resolved. All the best to you and your DS.

[Labradoodliedoodoo]

Try eating gluten free. I’m not celiac but gluten gives me the runs badly.

[SoCockneyItHurts]

He's doing really well thank you! I can't quite believe how well he's taken to the milk only diet, he's managing to drink 2 litres a day and take's 2 bottles to school for break and lunch and hasn't yet encountered any problems. The school have been so lovely and supportive. It's actually incredible to see the difference in my DS....he has SO much energy and is low a different child! Even his teacher couldn't believe the difference in him. Just goes to show how rubbish he must have been feeling before. We saw his consultant and IBD nurse in the week and his consultant wanted to start him on the Azathioprine which we started today.....no adverse effects yet. I've been feeling so down about it all to he honest and have been dreading giving him the medication as the more I read about it the more it scares the life out of me! I just wish he didn't have it, it's taking a while for us to get our heads around everything. He's having an MRI in a couple of weeks of his pelvis and a small bowel study to see the full extent of the Crohn's. I still wonder if they made a mistake but his consultant is adamant it's Crohn's. The future scares me but I'm just taking one day at a time. Thank you for asking how he's doing and again to you all for your advice and support xxx

[Orlandsundry]

How’s your DS getting on with liquid diet OP? Hope he’s feeling a bit better? Xx

[MollyHuaCha]

Hi SoCockneyItHurts, I've been thinking of yr DS, hope he's showing signs of getting better.

[lougle]

What a lucky boy to have a mum who kept going to get someone to listen. Try to look after yourself as well as him

[Scarydinosaurs]

I’m so pleased you have a diagnosis. I’ve had ulcerative colitis since I was a teen. If you ever want someone to just talk about it, please just DM.

Best of luck 💐

[youarenotkiddingme]

o know you're overwhelmed right now but what a fantastic Mum for following your instincts against the tide.

I know the journey is long and daunting but at least now you can work towards recovery and optimum health.

[SoCockneyItHurts]

Thank you all so much for your support and comments. It has helped me so much over the past few weeks and I'm truly grateful xx Today I'm slowly coming to terms with his diagnosis and it's very difficult to get my head around. My head hurts with information overload! But I just wanted to thank you all for your lovely comments xxx

[HPandBaconSandwiches]

I’m glad you have an answer but sorry it’s not something that’s going to go away quickly. Without a doubt though it’s a good thing you have an answer.
I truly hope your DS feels better soon - sounds like you’ve found the right doctor to help you at least now. All the very best

[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.

[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.

[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.

[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

[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

[bostonkremekrazy]

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

[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