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  1. P

    Information or advice please

    Hi I haven't been on for a while as DS doing pretty well. Had a ssetback in September where they found ulceration near rectal area so steroids and increased dose of remicade. Now had colonoscopy today and yay umcers have healed! Report states quiescent colitis , mild erythema in rectum and some...
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    Potential new problem...help

    Hi - just when you think life has setteld down a bit it jumps right back up. 17 yr old son has been on remicade since feb 2015 so 18 months. has been great and absolutely fine. it has given him his life back. We had a couple of months where he had huge mouth ulcers for a few days after his...
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    Anyone in UK with 16/17/18 year old kids?

    Hi The title syas it all Just wonderd what your experiences were/are at this tricky time in life for them?
  4. P

    How do I help?

    So what do you do when your 17 DS says life is rubbish as he got sick with Crohns at 12 and things are tough?
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    White blood count

    Hi All wondered if anyone could help. My 17 year old son is due in for his remicade tomorrow and has been on this since feb 2015 with no problems. He had bloods done 7 weeks ago and I assumed all was well as the IBD nurses didn't call. However, I have had a letter today asking fo rhim to be...
  6. P

    Stop me going into worry overdrive!

    Hi all Son is 17 and currently on 7 weekly remicade and nothing else. Have seen a huge inprovement since this time last year. But... had infusion last week and all well, bloods ok as far as I know. He felt more poorly in the week running up to it but ok since. Today... liquid stools - why...
  7. P

    Festive season

    So this is our 6th festive season with crohns and he is a lot better but just wanted to wish everyone a healthy and trouble free couple of weeks as I know it is hard when they can't eat all the advent chocolate and won't be having chocolate for xmas breakfast or bacon sandwiches etc etc But...
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    Can't keep a good man down!

    Despite the trickiest 4.5 years ever, our DS has received great GCSE exam results today against ALL the odds. Crohns won't win here!:thumright:
  9. P

    Another casualty...

    Planned activities this weekend and DS can't do thanks to crohns... when will we get on an even keel? Sorry... just had to write it down to keep from exploding. Hope all your young people are having a better weekend
  10. P

    ...amd PANIC!

    It was all going so well... Feb '15 back on to pred and start remicade. 3 loading doses fine- no symptoms. during the 8 week wait for next infusion serious exams(GCSEs here in UK - DS is 16) and the stress nearly kills him - stomach and bowel affected with looser stools etc. Have 4th...
  11. P

    Remicade!!

    Just for anyone worrying about going on to remicade... it has been our miracle and I thank God and the consultant everyday for the wonder it has worked! We have had 4 doses now and it is amazing. Our son(16) is in the middle of GCSE exams here in the UK which are serious exams and he has loads...
  12. P

    Stress

    Hi All Any hot tips on managing exam stress? He feels ok but subconsciously the stress is causing his stomach and bowel to contract too much so he feels like he needs the toilrt. Worrying about this in exams. Anyone had success with anything?
  13. P

    Probiotics

    Hi Are probiotics ok with remicade? Stopped them whilst on steroids etc
  14. P

    Tapering Pred...

    Hi all, A bit of advice if possible please! We are 4 days away from finishing an 11 week course of pred - now on 5mg a day. He is 16 and is suffering with increasing joint pain over the last couple of weeks as well as a few more mood swings. He is also on remicade (just had 3rd dose) Hot...
  15. P

    Relief!

    Hi all We have just completed the 3rd loading dose of remicade without a hitch so hoping this is the magic!! 3 weeks left tapering pred and apart from joint pain all ok. Creams sorted the acne which is improving. cannot believe the difference in him from Feb! Hope you all are receiving help...
  16. P

    Nosebleeds

    Hi All Please help if you can... Ds (16) had second loading dose of remicade last Tuesday( so 7 days ago) All is well - docs happy etc Is also on Pred - just tapered to 30 mg today and will continue to do so over the next few weeks til at 0. Question- son had a nosebleed today - he does get...
  17. P

    Remicade and rashes???

    Hi An update and a question- DS (16) doing very well 2 weeks in on 40mg pred and had 1st remicade 9 days ago with no problems whatsoever. He's like a new child! He is at the age of spots and some acne and has had tiny red pinprick spots on his chest off and on PRIOR to treatment. I noticed...
  18. P

    Loving steroids and remicade!

    Hi An update... DS has had a really rough week as many of you will know from a previous post. I am delighted to report that his steroids have turned his life around in 6 days and the first infusion of infliximab (remicade) was a great success. Fingers cossed for the next loading dose. We...
  19. P

    Bowel prep..

    Hi All Just got DS (16) struggling through bowel prep before scopes and bone marrow biopsy tomorrow. Had forgotten how awful it is - poor kid. Hoping for answers tomorrow and getting on the road to recovery. really worried what they will find...
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    Advice before hospital

    Hi All, We go in for scopes and bone marrow biopsy Thursday. WBC 2.8 with low lymphocytes and neutrophils. On no Meds - has been controlling with EN Fortisip which isn't working at the moment. terrified what the scope will show. taken off Aza over a year ago due to WBC Question: for next...
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