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Crohns / ulcerative colitis sufferers

Discussion in 'General Discussion' started by ColdAsIce, 17 Feb 2016.

  1. [email protected]@y

    Wise Guy

    Joined: 18 Oct 2002

    Posts: 1,497

    Location: Lancashire

    Had my jab on Thursday, it was the Pfizer vaccine. I had a sore arm for 36 hours and thats about it. I'm on a daily dose 150Mg of Azathiaprene and also receive an infusion of Infliximab every 8 weeks, this didn't raise any concerns from the staff at the vaccination centre.
     
  2. Rocky86

    Associate

    Joined: 20 Aug 2011

    Posts: 9

    Suffer from this too, thankfully in remission now.

    I recommend installing a toilet bidet spray if you have to constantly make trips to the bathroom.
    For me, this sure beats dry wiping with toilet paper :)

    [​IMG]
     
  3. Minusorange

    Soldato

    Joined: 25 Nov 2005

    Posts: 7,205

    Unexpected phone call this morning asking if I want to book in for corona vaccine tomorrow, pretty quick considering my gran only got hers 2 weeks ago and she's in the 80+ group and I thought I was only in the 6th tier of groups after speaking to doctors last week about it (they never actually got back to me to confirm the group I was in because they suck)
     
  4. dowie

    Capo Crimine

    Joined: 29 Jan 2008

    Posts: 52,062

    Plenty of places have invited most of groups 1-4 already and are onto groups beyond 4. For example, my mum is in group 5 and got hers last week.
     
  5. dirtychinchilla

    Capodecina

    Joined: 2 May 2011

    Posts: 10,334

    Location: Woking, Surrey

    I believe I have the same one, though I put the nozzle into the holder instead of the handle. It's been great actually. It worked really well recently as well as I hurt my back and bending backwards a bit to wipe my arse has become rather difficult.

    You look to have a palatial bathroom. I had to take the toilet off the wall to install mine!!
     
  6. LCG-xyz

    Gangster

    Joined: 5 Jul 2016

    Posts: 388

    Hi All,

    I don't have UC but I was reading studies today researching Berberine (I'm looking for a p38k inhibitor) and I stumbled across this:
    https://www.hindawi.com/journals/mi/2020/9419085/

    Are any of you already taking Berberine? If so any positive effects?
     
  7. dirtychinchilla

    Capodecina

    Joined: 2 May 2011

    Posts: 10,334

    Location: Woking, Surrey

    With the news that 1.7m were being added to the shielding and therefore vaccination list, including the immunosuppressed, I was expecting to hear from them at some point. I know it's a little early, but I called up my doctors and they said that they didn't have me coded as at risk or anything whatsoever! So despite being on immunosuppressant drugs for about 16 years, they were just going put me in the ordinary category for my age group = whenever.

    I was quite shocked and have contacted the GP to get that resolved. So I'm writing this as just a heads up. If you think you should be vaccinated (anyone in here probably should) then get in touch with your GP if you haven't heard anything. It may be that they think there's **** all wrong with you!!
     
  8. dowie

    Capo Crimine

    Joined: 29 Jan 2008

    Posts: 52,062

    Group 4 was only certain immunosuppressant medications (mostly biologics IIRC) not all IBD meds seem to have the same risk. I guess if they've changed group 6 though with that additional 1.7 million people then that might well cover others - the various tablets etc.. so deffo worth checking, especially given some of the errors that have been made with records like the bloke with the huge BMI because they'd recorded him as only being a few cm tall!
     
  9. DanTheMan

    Mobster

    Joined: 11 Oct 2005

    Posts: 4,433

    Location: Manchester, UK

    I'm not sure where they get the information from that they use to categorise people. It definitely seems inconsistent when it comes to prescription / medicine history.

    I'm on a few Facebook groups for UC / ileostomies and there's a broad spectrum of people that have received the vaccine and a lot of inconsistencies when it comes to medical history.

    It seems people on biologic and azathioprine / mercaptopurine are getting categorised higher than people on only one of them.
     
  10. dowie

    Capo Crimine

    Joined: 29 Jan 2008

    Posts: 52,062

    AFAIK the biologics tend to put you in group 4, those other two don't, they seemed to have been deemed lower risk earlier on.
     
  11. Minusorange

    Soldato

    Joined: 25 Nov 2005

    Posts: 7,205

    Yes Azathioprine here and group 6, had the vaccine last week
     
  12. dirtychinchilla

    Capodecina

    Joined: 2 May 2011

    Posts: 10,334

    Location: Woking, Surrey

    Congrats!

    I’m on Stelara
     
  13. dirtychinchilla

    Capodecina

    Joined: 2 May 2011

    Posts: 10,334

    Location: Woking, Surrey

    Hey guys, just wanted to update you in the hope that this could be useful to someone else. I ended up getting a phone appointment on Friday 26th with my GP to whom I explained that I had Crohn's and had been on immunosuppressants for about 16 years. They immediately changed the coding on their end and I was vaccinated yesterday (Sunday). So, if you think you should be in this current raft of vaccinations then call your GP and get it sorted.

    Interestingly, they said that the government where the ones who decided who should be shielded as they "have all the information" but apparently weren't the ones who decided who got vaccinated. IMO, I should have been on the new shielding list if it's as simple as "anyone on immunosuppressants" so I don't really know who to believe, but in 9 days I will be feeling a lot more comfortable being out in the world.
     
  14. LeMson

    Mobster

    Joined: 21 Mar 2012

    Posts: 3,894

    Booked my Vaccine for this weekend, cool :D
     
  15. dirtychinchilla

    Capodecina

    Joined: 2 May 2011

    Posts: 10,334

    Location: Woking, Surrey

    congrats!
     
  16. Zico

    Mobster

    Joined: 15 Jan 2003

    Posts: 4,917

    Location: South East

    @dirtychinchilla surprised you've only contacted your GP now as you should have been either group 4 or 6 at the very least before now.

    My colleague was diagnosed a few years ago, and compared to myself (18+ years now), is in a worse position with his condition and was taken out of being in group 4 some point last year with no reason. He continued on biological treatments and it wasn't until a call to the gastroenterology nurse (who in turn chased the GP) that got him back into the right group. I share the same gastroenterology nurse (and I guess team as same Hospital trust) and have been on the group 4 list since the start. My GP has been great and I believe that made the difference between myself and my colleague.

    I'll find out how things are soon as I've moved house and now recently registered with a new GP. I've had my first Covid jab back at the beginning of February so will be due at the end of April/May for the second if they are still sticking with 12 weeks apart.
     
  17. dirtychinchilla

    Capodecina

    Joined: 2 May 2011

    Posts: 10,334

    Location: Woking, Surrey

    I expected to be in group six, but I think I waited a week past when I believe they started on group six to ask what was going on. It's fortunate that patients are paying attention! The whole thing should have been fully automated.

    It really helps to have an invested GP or gastro nurse or even specialist. I've found nagging them helps...
     
  18. Zico

    Mobster

    Joined: 15 Jan 2003

    Posts: 4,917

    Location: South East

    I wouldn't dare nag my gastro nurse :eek:. She's very good and more likely to nag me where I have had a small lapse in taking my regular med's :D
     
  19. chroniclard

    Capodecina

    Joined: 23 Apr 2014

    Posts: 18,854

    Location: Hertfordshire

    Meh, boys been admitted, been having headaches for a day or two, now high temperature, 40.... Unsure is Crohn's related at the moment though, think it might be urinary infection. :(

    Been on infliximab last month or so, on his 3rd infusion as last meds were not working.
     
  20. dirtychinchilla

    Capodecina

    Joined: 2 May 2011

    Posts: 10,334

    Location: Woking, Surrey

    Sorry to hear that. it doesn't really sound like Crohn's. Fingers crossed it's something simple.