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  1. dodie74

    First infusion done

    So pleased to say today's first infliximab went fine, back in 2 weeks again for next dose then 4 weeks and then continue every 8. Sooooo glad this day is over and he seemed to tolerate the first one ok 😊 xx
  2. dodie74

    Infliximab

    Sorry for all the posts recently but my boy has decided to go for infliximab. Feeling really nervous about it all 😕 xx
  3. dodie74

    Infliximab and humira

    Hi again everyone....still trying to get our heads around what to do about meds 😳. So does infliximab normally get tried first and if it failed do they then move on to humira? Xx
  4. dodie74

    What to choose 😕

    So we are going to have app next week to talk about adalimumab or infliximab. So hard to make a decision ( Kian will have final decision after the app) but thought would come on here to ask about both? Xx
  5. dodie74

    Crazy crohns

    My 13 year old is eating me out of house and home 😳 I'm not complaining as its great he has a great appetite but his calprotectin level is very high and due scopes on Friday but how can he feel so good, no symptoms and appetite like a horse!!! Crohns really does baffle me!!
  6. dodie74

    Omega 3 fish oil

    Just wondering about starting my son on omega 3( he normally just has a multivitamin but I read omega 3 can be good for inflammation etc) What are people thoughts on this please and are they ok to take while on medication? Thanks
  7. dodie74

    What next?!

    Well, 15 months after a right hemicolectomy my son now has inflammation going on which was detected through calprotectin test. Consultant calling tomorrow to talk about scopes and what next. His ibd nurse said that nothing is worryingly wrong, this is about proactive management. Still such a...
  8. dodie74

    Lower dose of mxt.

    Not been on a lot as things been going ok. A blip with the blood numbers though....white cell and neutrophils getting lower so his team have decided to lower his dose of mxt from 15mgs to 12.5mgs. I'm thinking maybe he doesn't need so much now because the bad area has been taken away? Has...
  9. dodie74

    Blood numbers

    Just got my boys blood results and the numbers have dropped again 😞 so more bloods next week to check again and if still low they mentioned reducing his methotrexate....hopefully this will work and get his levels back up again. He's been on it for 18 months and up until now he's been fine. Xx...
  10. dodie74

    Update

    Hi, not been on for a while but thought would just update. Kian is doing really well after his surgery in December. He has put on 16lb and grown a couple of inches too. His bloods were a bit off ( neutrophils) were lower than normal but his ibd nurse mailed other day to say they have settled...
  11. dodie74

    Wbc low

    Had a call earlier from our local health centre for my son to have repeat bloods as his wbc is low....didn't ask how low as we going tomorrow for his bloods again. I really hope it's nothing to worry about. He's been on mxt for 14 months now, had right hemicolectomy in December and had 2 weeks...
  12. dodie74

    Infection

    Ohh well, 6 weeks post op, all was going well but went back to doctor today and my son does have an in infection after all at his bellybutton where he had keyhole surgery. More antibiotics to take for 10 days on top of the ones he already on. He not in any pain so that's a bonus I suppose. Hope...
  13. dodie74

    Flucloxicillin

    My son has been prescribed a weeks course of flucloxicillin for a bacteria on his skin after surgery. He is already on low dose cipro but I've just read about methotrexate ( which he is on) and flucloxicillin might not be good together, reluctant to start it now and I still cant get in touch...
  14. dodie74

    Keyhole site.

    So it's 4 weeks tomorrow since Kians surgery( keyhole) and all is well, he has actually gained 5lb in last 9 days😀his appetite seems really good. Anyway, we were at docs yesterrday as he has little hole at he top of his belly button which is weeping clear fluid ( it doesn't smell) and there no...
  15. dodie74

    Had surgery today

    Well that's my boy been through his surgery. All went to plan. Totally shattered and he's been sleeping most of time since came back from theatre. So glad that today is over xx
  16. dodie74

    Anxious about surgery

    Only over a week to go until my sons resection. Having a major wobble about it all as he looks well, feels great etc, it's this one area at the terminal ileum that's scar tissue that need to be taken away as he hasn't grown or gained weight for a long time now. That is the only issue he has and...
  17. dodie74

    Surgery soon.

    Jus had a call today for Kians surgery which is booked for 17th of December!! Close to Christmas but think it's better to have it done sooner rather than later. Talked to Kian about it too and he agrees. Nerves kickin in already and that's me!!!! Eek 😕
  18. dodie74

    Another update

    So we are meeting with the surgeon on Thursday to discuss the next step. Most recent letter said that crohns is causing problem at end of small bowel only and the biopsies show no crohns at the moment in the large bowel. So now we are off to discuss the op to take away the scarred bit and join...
  19. dodie74

    Update.

    Update on Kian. Went to hospital Thursday to get ready for scopes on Friday. Thursday was a nightmare as he could not drink the picolax this time at all so he begged me to ask for nurse to insert ng tube for it ( he has never ever had ng tube) 1st try he was sick but got it down successfully...
  20. dodie74

    Mxt not working

    Had call from ibd nurse tonight, looks like mxt not working 😞, calprotectin result very high so have to go for more scopes. She mentioned infliximab or surgery so will now have to wait for results of scopes to see what next step is. Hate this disease!!
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