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Colitis Journey – Starting Azathioprine

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Okay given the fact that you’re here and come to the channel thank you very much you’re likely coming here i’m going to have a hazard i guess as you’re about to start as a thyroid and you’ve read the instructions or you’ve spoke to your gp or your doctor your ibs nurse and they’ve explained the side effects and they’re terrifying and you’re likely doing exactly

What i did at the same time which was go online research and try to find people going through very similar thing to what you’re unfortunately going through and i’m well along with age i did the exact same thing i went online at a search on youtube and try to find other people in a very similar condition now very similar mind state to myself and there was a few

People out there who went through the you know the isothioprine journey and going through like myself i’ve got colitis i’ve got ulcerative colitis and this is my third flare-up so yeah and i’ve never done the asymptotic before and when i’ve kind of read the side effects it’s basically death dying you’re going to die this is horrible you take this you’re just going

To suffer in pain and it’s horrifying you know you look at the kind of side effects from everything from nausea hair loss to lack of appetite which is good for me from a fat bastard so you know they’re having a laughing lack of appetite actually helped me a little bit um that’s all fair and good but then you look at the other ones which is basically you get the

Skin sensitivity of an albino vampire um you have the risk of lymphoma skin cancers cancers um leukemia non-hodgkin’s lymphoma i think i mentioned um it just sounds horrible there’s no way you can look at that and go yeah what’s the alternative and i was in the same place and i am in a simply said literally i am i’ve been through as i spoke to my ibness ibs nurse

About it and they were okay but you know i don’t know if it’s legally contractual or just the way they’ve got to do things they’ve got to kind of say hey look these are risks and they are risking you quite they all say you’ve got way of the benefits you know then you’re looking at the fact you’re taking these horrible tablets which look like this um you know

Up to the next four years four or five years plus you know it’s that does not sound good when you look at those sort of risk factors and that’s what led me to kind of contact the sort of crohn’s and colitis uk um helpline and i do recommend getting in contact with them they were actually really good really responsive and really kind of listen to the problems and

You know the the last year i spoke to on the phone and i said hey look i’m about to start as a thyroid and i’ve got these concerns where she’s like yeah a lot of the calls we get are from people in the very same state you know this is not an uncommon thing to have these worries and people like you and me should definitely have these worries these are the reasons

Why we as a community as a a group put up with us you know we get together we do these searches we find a medium that works for us whether that is you know researching online you know you keep doing that you’re just going to see death death death um but for youtube i wanted to see something going through the journey you know go through that moral sort of dilemma

That you’re going through that i’m going through that i’ve had and i did and i am you know there’s no lie that taking this medication is terrifying you coming to the decision um you know sort of dealing with your own sort of mortality uh is where i was when i was making these i over complicate things i overthink things constantly so it wasn’t a case of just you

Know we take these pills and we get better everything’s gonna be fine it’s like i had to justify my head that huge risk factor with the leukemia lymphoma and cancer bone marrow just becoming a vampire i’m scottish so i’m not used to seeing sun anyway but even more just it’s horrible um so yeah i’m right there with you and i’m about to start this journey this is

Actually um during this chat this will be my first day taking azothiaprin i want you to talk to you a little bit how i came to this decision of actually doing this so for me uh this i mentioned quickly at the beginning this is my third flare-up so my very first flirt was a couple years back i’ve had this for about four years now um a couple years back um i got

It i got you know i had it was a about blood and i panicked a lot i didn’t want to go to the doctors you know i was a bit apprehensive i didn’t want to get to go see dr finger bottom um yeah and it didn’t get any better so i made a conscious decision to actually go get get my arse fingered by a professional um and you know i’m sure you’ve been there myself

Like once you get it done you realize it’s not a big thing it’s overdone it so quickly anyway we couldn’t find any hemorrhoids fissures or anything like that they diagnosed this scent specialist this diagnosed as uh segmental colitis i’ve had a colonoscopy and they’re like okay yeah we found that was segmentalized it’s a small area in the sigmoid of the colon

And i’m like it’s just literally just here try prednisone steroids try print nestle and stairs it worked to treat fantastic that was all done dusted i went to remission for a while second flare up i felt great and you know i know what this is there’s i’m blood again i’m just gonna go to the hospital tell them what it is and they’re like right we know what we

Know what we’re doing here they started me immediately on prednisone steroids now prednisolone for me was i might do a little individual channel on all the drugs and how it behaved with me but prednisone i only got really like two side effects i got amazing skin and insomnia uh and the weight gain bum i was big anyway so it’s not the the the worst thing you

Know um but i got amazing skin when i’m on steroids i usually do have amazing skin it was fantastic um but the prednisone steroids did nothing and then they put me onto a pedestal from enema that’s a bundle of joy um that did nothing uh they then fast tracked me um over is therapy and straight to inflexible biological treatment infusions and they were great

I loved them and again you had to deal with a very similar risk because they have some seriously bad side effects but i loved infusions and influximab infusions you know you turn up once every couple of weeks then it got larger the distance between them and you know you got infused you were sat there for an hour comfortable as you could like got the poison the

Biological treatment pumped into you you left i felt fine afterwards and i did that for i think it was eight treatments and the only problem i stopped that was i went to remission when flex map it was perfect you know after i think it was the sixth treatment i stopped shin blood and i was gone it was great i did a couple more treatments afterwards um but yeah

It was great and the problem it was with infliximab was i started developing antibodies to it and i’ll do a thing on the flex map as well as the other pills but yeah it developed antibodies so i could no longer take a flux map but i was in remission so no big deal that brings us to now um november last year which is november 2020 that’s our and blood again you

Know there’s nothing good when you start shooting blood you come out of that remission it starts having that flare up you the blood you’re just like um you know you’re feeling you know you’re you’re back you know it’s just starting again uh your heart sinks you just wanted a bit more peace you quickly get over it you quickly start getting into it right let’s

Get into mode so still taking octazer which is uh anti-inflammatory for your gut and we doubled the dose of that so i was taking 2.5 grams twice a day so six of the red tablets and they then have to give you omega prison which is for your protect your stomach calcium tablets but this and not it was not it’s not pedestini that’s a i think it could be a pedestal

It’s a salific enema which is so much fun and then the pigmented stairs i’m just finished i’m just coming off their prednisone so i’m on 15 milligrams the moment you start at 40 and every five days take off five milligrams and now none of this was working you know i went through all of them they’re attacking it from top and bottom from the cells in the octazer

Red pills to the enema up the arse trying to get trying to just cam this thing down but no nothing’s working so yeah we got to the next edge i personally wanted to go for like kind of move towards like vidalizamab which is because it can’t take an infliximab with infusions you go to via eliza map or one of the other ones but going for nhs you know they’re like

You know you can’t really need to go through is a thioprin now and and it could work it could be the one for it then it told me the side effects and well this okay anyway that led me to contacting crohn’s and colitis uk spoke to the helpline explaining and a lot of what goes through what they said was very similar and you know everybody walking the street has

About two and a hundred thousand chance of getting some of these horrible things everybody you know that’s it going on as a type ring it does raise it you know but we can’t lie about the fact it’s a risk is there lots of pills have risks etc etc that didn’t make me feel any better either trust me what we do get to is the fact of the precautions and medically

They take yeah you’re not gonna be looking for a summer holiday anytime soon where you can get out and enjoy the sun welcome to vampire lifestyle what this is you know and i’m sure you’ve been told this is you’re gonna be monitored your blood is literally monitored a lot so you get blood checks two weeks four weeks six weeks eight weeks 12 weeks you get a lot of

Blood taken and that is to do all the checks which is you know is your liver function test your lft going down is your bone marrow fbc fuel blood counts all this sort of stuff is there any change or impact and it is to sort of say okay things are things are a bit weird here let’s stop this just now to figure out what the is going on where the risks are where

The changes need to be and then change up the game plan based on that information so you know catch it as early as possible so that you know we never get to those really bad stages and that’s where i think i felt a bit more comfortable i always felt like you know if i take one of these does it suddenly switch to the leukemia switch on and that’s your do not

Pass gold do not collect 200 pounds be dead in five years me that’s terrifying no you know there’s it’s not going to be that way you know there’s it goes down this ramp where you can kind of hope to with all these checks in place with other things you’re like they get identified quickly you’ve got to be a bit diligent in yourself in which you kind of monitor

All the signs for sore throat calls infections anything just keeping that constant communication make sure that you know you’re you’re in the in contact you’re not going to bother them this is your health care this is your thing so if you sneeze and it feels funny you just contact them just there’s no heroes in this we’re just going to try to save our own ass

Pun intended right so where we are now um yes i’m about to start day one i’ll be updating these videos more frequently with possibly less time taking on it just so you can go through you have to take um i’ve i’ll show you my other pills um the other ones you i can take without food but for azathioprine you take with food so i have my little pasta noodles here

That i’m going to have in the morning i’m not a big fan of eating in the morning and they recommend swallowing it with water again i would have preferred iron brew or something lovely but here we go so you know they have a lovely packaging i love the black and red packaging but the pill is kind of normal colored doesn’t smell of anything oh yeah also make sure

You take your fitment pills because of the bone marrow thing so i’m on that twice a day now here’s a therapeutic killer cure huh god these are terrifying here’s those then go down day one begins now they did warn about some nausea and things like that i’m gonna get so i’ve made sure with a long weekend to just kind of sit back understand what this pill is gonna

Do to my body and take it from there but i’m going to love you and leave you and i’m going to go have these lovely pasta needles and i will update another time but do recommend if you get a chance have a look at the crohn’s and colitis and website for uh isothyropine and mercaptophurine never gonna say that again they’ve got some great information but you know

We’re in this together it’s it’s bloody um but yeah hopefully as we go through it you can see what it’s like for me and make a decision based on that bye

Transcribed from video
Colitis Journey – Starting Azathioprine By Cero Colitis Journey