Yeah and that was slightly I haven't really said anything about it yeah I did a full game of the plan you didn't have much of the nclex map literally I was hooked up to it for a while and then you felt short of breath yeah so like I phoned my mom after I've been hooked up and that's absolutely fine got a phone to my mom and then like you know when you feel like you have a scratchy throat mhmm that's how I felt and then like 2 minutes later my chest just started going really tight I couldn't like properly breathe yeah poor thing did have you lip swelling or tongue swelling my face was quite swollen I think yeah but in an accident they gave me the whatever medicine it was they gave me to sort of calm me down it did calm down for about 5 minutes okay but they didn't really say what else is gonna come from that because obviously now I haven't had the infusion of course exactly these transfusion reactions can be funny sometimes you can have reaction and not a reaction again yeah but the most important thing now is that your seems like your ulcerative colitis is is worse again is that is that right so yes well I'm not really sure so the last few days I went to the doctor for anemia and anemia mhmm so I went to the doctor like I fell on his prednisone yeah and you're on 35 now is that right 35 now tomorrow it should go down to 30 mhmm but I just remember there was a really weird side effects from it so I've been nosebleeds randomly that's true and I've this weird thing on my face it's got these things I think it's half past oh nice yeah it looks like a like a black nasty jacket doesn't it yeah but it's like how do I find yes they took a photo of it and it's was like it was don't if there's like a hole in my face oh wow when pus was coming out of yeah like it just comes out like like I don't touch it or anything it just comes out randomly yeah have you got anything on anywhere else under your arms because I think we were worried about retroaginitis yes so I started the cream for that that's getting better is that better fine okay mhmm getting there good but yes I've had nosebleeds I've this weird thing on my face I'm having really bad headaches headaches okay the stomach problems actually did calm down for quite a while with the steroids and the fixer yeah and then the last 2 or so days mhmm like my tummy started to hurt again painful yeah and you had lot of pain before didn't you yeah it's not as bad as it was before but it's like coming back it's creeping in slowly I'm really sorry no worries and I've been going to like the toilet more and stuff like that but I went to the doctors because when I left the hospital they said if I start to feel like pain again they'd rather than leave it but and how are your back has it been changed so I've been going to toilet a bit more often again how often last 2 days probably at least like a day times a day and what kind of stuff comes out it's just diarrhea watery stool yeah but there's still no blood which is good that's really good so there's no blood stuff have you had any fever so I've been having really hot flushes mhmm but but you shouldn't get hot flushes you're not menopausal are you no well no no no so like this morning for example I was like I felt quite chilly and then I just started sweating out of nowhere mhmm I keep waking up in the night sweating oh god so yeah I don't know it's just very strange and how long have you noticed that for that's been happening since I was actually in the hospital oh I know okay because even when I was in the hospital they happened for me ice packs because got steroids can sometimes yeah it was also quite hot when you're in wasn't it yeah you seem to remember that was really cold yeah but yeah your these steroids can be due for a test I just read up on that it seems like it could be a side effect so okay yeah of course yeah and we need to decide what we're gonna do then if the imfliximab is off the cards yeah because I did say to them because I do have an appointment on the december 8 is for any of those no not for no it was just like a general appointment I think talk to us so I said to them went on to like didn't end up having my second infusion I said what happens now like they'll go on something else so I do try something different and they just said to wait until my next appointment yeah but my next appointment isn't actually about the infusion so well it's probably is with us to talk about yeah I think it's with doctor desmond doctor desmond who's I think your consultant yeah yeah yeah so we can talk about what we do about your patients at that. Certainly but at the moment we need to get this sorted out for you don't we yeah it sounds like if you're opening your mouth 7 times a day it sounds like there may be some oxygen supply as as it was when I got admitted last no but you're having blood before right yeah a lot of blood but I'm not having any blood now but it just feels like just feels like you're not creeping in a little bit yeah exactly yeah it may be sensible to put you on a higher dose of steroids now you're in hospital but even that drip of steroids again okay to try and calm things down quickly to make you feel better okay and then to think about what we're gonna do about the infusions we've got lots of other things we could give if we're gonna take infliximab none of them work incredibly quickly though there were other ones infliximab's great because it works so quick whereas the other ones take them a bit more time yeah but there's lots of things we can do and lots of things we can sort out at the moment it's 10:00 at night so that's getting you feeling better get your: on less inflamed with some some anti acid medicine while you're on the steroids are you on the omeprazole already or anything like that yeah I'm already on that take those a day and you want the thical d 3 the the bone strengthening tablet along the side great so we're going on those I'm also on the salazine as well and obviously the prednisone those suppositories or tablets that you need tablets tablets yeah but do you use any no so I did get originally prescribed some like before my last hospital visit mhmm but then they didn't prescribe me anymore they just told me to take the oral steroids because they were giving me no that that should be sufficient yeah they're giving me suppository steroids obviously I don't have any organ steroids make you feel better where they don't fix the underlying problem than fixing the endothelazine or but now we're trying with infliximab and we can try something different here the nurses who work up on archings would have documented everything about how likely they felt your reaction was and whether they'd be keen to re try or not sound good yeah can I have a look at this number on the face I've got this little yes magnifying glass thing do you think the nurse is having tomorrow after it been a long thing I know you've been in for a a while and you I know you wanna get out of the hospital yeah I understand I think it's difficult to say when doesn't have that really depends on what brain responds to the steroids yeah I can see there's a little punctum there on your cheek an area that looks like some stuff might have come out of it yeah it's been yeah it's been happening for a week like it just keeps randomly sort of leaking out weird but there might be something in the collection underneath it it's hard underneath it compared to the other side that's strange can I touch your tummy it is it sore it's fine it's sore like around here mhmm it's always like the lower bit like it's always fine up here mhmm it's just always lower bit so yeah and any nausea or vomiting no no that's just your markers of infection in the blood are quite high your copd's a 136 yeah yeah alright how long is it yeah not bad I was admitted a week this it was around a 100 and something I think and then the kingdom it was like 80 or so yeah they went back up again no it's not recommended no it's not no booked it's just yeah to anything just yeah just yeah and is that to the case of covid is it 02:00 okay good that's what I've heard and +1 89 okay okay any coughs or cold mhmm any es anywhere but on your cheek no just like keeping a random nose piece that's strange I never get nose piece yeah I know it's alright I guess it's probably the steroid so we attribute everything to it back I did have a Google and side effects yeah well unfortunately so yeah but what mean do if my infection markers are either well they're marked with inflammation they're concerning infection so you could have an infection somewhere yeah I think that's unlikely because you don't tell me that you don't sound like you've got an infection for that but it could you had high infection inflammation markers or with the ulcerative colitis that got better that's what's going on okay again okay and then it's lack of second inflix imab means that the has worn off and the steroid dose is coming down means we you're not on any treatment at the moment and things are becoming more said that to my mom earlier I said the annoying thing is it feels like it's just an endless circle yeah but I go home sorry and I come back in so we put on iv steroids I go home and this I come back is a difficult time because it's a new diagnosis yeah we're getting to grips with it but we're also getting to grips with our treatments and how they how you respond to them everyone's different yeah which is what makes my job so interesting and it makes your job your so hard because it seems like we don't know what we're doing but really it's difficult don't know know saying what exactly it is trial and error yeah and we're trying to find a drug that you can tolerate yeah and it takes a bit of time to get there but okay but yeah hopefully it's not usually as true but if any worsened tummy pain then please do start doing an x-ray of your tummy but to examine your tummy at the moment I don't think you need anything to do with any more radiation you've had a fair amount will I stay down here then we'll get you on a bed and then we'll stay down here exactly and then I'll say hypothetically if they start me on the early schedules tonight but can I do them tomorrow yeah so in an ideal world that's be that'll be the case yeah okay I worry that hold out loads of hope like what happened last time but exactly I worry that you won't respond you that quickly because we know you've got quite aggressive disease and that your markers of infection have come quite high day off the well 2 days off the imfliximab and you're flaring again yeah which makes me think it's less likely you'll respond quickly yeah b it'll good be to come up with a plan about what we're gonna do instead of leaving you till the december 8 which will probably restart the cycle again in that you'll come back in again in the meantime b and c I think it takes time to see how sometimes it takes time to see how you respond to these things I mean it's possible anything's possible but I think it's unlikely it'll likely be sometime over the weekend okay sorry it's alright yeah but it's not a prison I can't wait we wanna go down to clinical and we can come up with a plan there's no? I'll just send a bucket anyway won't I unfortunately yeah I think you will alright okay thank you okay was lovely to see you again nice meet +1 920 yeah we'll back you