Crohns / ulcerative colitis sufferers
- Thread starter ColdAsIce
- Start date
Do you know what they base the dose off? That sounds very low compared to what they put me on... 175mg at 82kg bodyweight. We didn't work up to that either, just boop, 175mg, go!
Something else I've been wondering about since being put on the Azathioprine is how seriously to take the sun screen advice. The leaflet implies you should put total block on if going out in the sun AT ALL but I got mixed messages from my IBD care team - they initially said it's a tiny increased risk but then followed up with the quoted line of "we advise sunblock if going out in the sun" and weren't willing to put any bounds on the time or sun intensity.
Soldato
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- 25 Nov 2005
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I'm on 150mg and only been on it for 6 months
As for sun screen, I figured it was warning for prolonged exposure to the sun so for longer than an hour or so, I just bought a stronger spray and will use it when I'm expecting to be out longer than an hour, otherwise for my hour long cycle/walk I just go as is, not that there's been much of the sun this year
It is low, because in his case it's being combined with allopurinol. I was being treated by the guy who researched/came up with that treatment - I remember going to the local chemist to get the prescription and them being like "WTF???" as it was flagging up some warnings for them, they needed to phone to check etc..
Basically, if azathioprine breaks down into mercaptopurine in the body - if azathioprine doesn't work initially or gives you side effects then they might try simply giving you mercaptopurine and/or they might try combining low dose azathioprine or mercaptopurine with allopurinol (a treatment usually used for gout) - allopurinol, when taken with azathioprine(or mercaptopurine), increases the levels of mercaptopurine in your blood ergo you don't need a large dose of the aza... it's useful, for example, if you had side effects when taking aza or mercaptopurine as perhaps the lower dose of aza means you don't have the side effects.
Of course, if the side effects are due to the mercaptopurine then meh... all three of those options might be a no-go and they might try one more oral drug or just look towards biologics.
Do you mean just on a normal day or normal sunny day - walking to the shops etc..? I use a moisturiser which is factor 15 as a regular thing.
Though if by going out in the sub you mean as in going to the beach and being exposed for a while then yeah, I'd go with sunblock. I can't remember re: aza but certainly, with the biologic, I'm on now you can get a nasty burn and also are at higher risk of skin cancer etc..
I wouldn't typically hang out in strong sun for that long anyway but before being given the drugs I would go for a 40-60 minute run or eat breakfast in the garden for ~30 mins in the sun without cream. The advice on the nhs page is just "Use a sunscreen while taking azathioprine, as this medicine can make your skin more sensitive to sunlight." which could mean all the time or could just mean pretend you are super fair skin and err on the side of caution. I wasn't initially concerned about it but I've got a friend with lupus who has to avoid the sun because of similar immunosuppresant medications and she carries a parasol with her 9 months of the year after her consultant really laid it on thick after she was diagnosed.
Interesting details about the meds, thanks for explaining.
That's basically where I've landed but I was hoping they'd spell it out somewhere. I've got a habit of thinking it'll be fine, going out for 30+ mins then feeling hot in the sun and thinking I've made a huge mistake and worrying about it.
Soldato
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30 mins to an hour you should be fine I guess it all depends on how sensitive your skin is to burning in the first place, if you're overly sensitive then it's probably better to put the screen on, I'm fairly sensitive I know anything over an hour I'll likely start to tan so I use that as my baseline for when I should put the screen on, if in doubt just put it on anyway or carry some around with you if it's a high UV day and you happen to be out longer than you thought
Soldato
I must admit, I can't be arsed with sunscreen. If my wife is with me I'll accept her applying it, but it's so annoying normally. She did buy me a spray which is much more tolerable, but the whole application and the smell just get on my nerves.
I would love to go on a sun bed. I really don't like being pasty. But I'm also covered in moles so I would say I'm pretty high risk. Fortunately I'm not on azathrioprine any more, biologics nowadays which don't come with a similar warning.
I would love to go on a sun bed. I really don't like being pasty. But I'm also covered in moles so I would say I'm pretty high risk. Fortunately I'm not on azathrioprine any more, biologics nowadays which don't come with a similar warning.
Nice one mate... My nurse must have given me laymens terms
Yeah the aza isn't getting to where it should be. We'll shunt it with allopurinol.. But we need to lower the dose. Is kinda all I got
Suppose its like grapefruit and BP medication.
My mistake
I must have been on 200mg as I'm now on 50mg which was a quarter of what I was on..
Assumed I was on 25mg for some reason
Soldato
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Spoke to consultant today, he's going to give me some steroids again wants a blood & stool sample and going to book me in for another MRI scan
I had a Gastroscopy/Colonoscopy the other day, I suppose this is the most appropriate thread for all things bowel problems.
Symptoms: I've been having 6/7 months of loose stools where it's been coming out really runny pretty much every day, going 3/4 times a day, I developed some cramping/dull ache in my lower right side and then my lower left side which was more prevalent at night time. I then started getting bright red blood after pooing, it would drop (fall out) into the pan after I had pooed
Tests: I had a Fecal Immunochemical Test (FIT) that came back abnormal, I also had a Calprotectin which came back elevated. I also had all the major blood tests done (Full blood count, ESR, Coeliac, C Reactive Protein, Urea/Electrolytes, CEA, Ferratin, Liver function, Bone profile etc, these all came back normal) and was given an urgent 2 week referral for a Gastroscopy/Colonoscopy
I had Plenvu prep, and after reading horror stories about how bad the prep is I was expecting to be throwing up, but the taste was completely bearable and actually tasted quite nice I thought; it was mango flavored. It gave me no problems with nausea/sickness, and could easily drink it within the 30 minutes for both doses. It completely cleared me out with no discomfort whatsoever, no sickness, bloating, nothing.
Went with the sedative for the Gastroscopy/Colonoscopy and they gave me midazolam/fentanyl. Tis a funny situation where you have no idea you have been given anything, and it does not make you "out of it" or think you're trapped in your own body and can't do anything. I had no recollection at all if I had slept or what, all I remember is the beginning when they initially inserted the Gastroscope and the initial part of the Colonoscopy.
It all went fine, just a bit of gagging with the Gastroscopy and a bit of bloating with the Colonoscopy, but I only really remember the first 5/10 minutes before I was back in the waiting room where I felt completely fine.
The report showed everything was normal, and in the notes he said "vessels visible, some mucus, see what biopsies show". After months of worrying, and the anxiety of them rushing me through for the scopes I guess it's not anything too serious, but I expect the biopsies to show something. I think I heard him in the background say something like "a bit of colitis"
Symptoms: I've been having 6/7 months of loose stools where it's been coming out really runny pretty much every day, going 3/4 times a day, I developed some cramping/dull ache in my lower right side and then my lower left side which was more prevalent at night time. I then started getting bright red blood after pooing, it would drop (fall out) into the pan after I had pooed
Tests: I had a Fecal Immunochemical Test (FIT) that came back abnormal, I also had a Calprotectin which came back elevated. I also had all the major blood tests done (Full blood count, ESR, Coeliac, C Reactive Protein, Urea/Electrolytes, CEA, Ferratin, Liver function, Bone profile etc, these all came back normal) and was given an urgent 2 week referral for a Gastroscopy/Colonoscopy
I had Plenvu prep, and after reading horror stories about how bad the prep is I was expecting to be throwing up, but the taste was completely bearable and actually tasted quite nice I thought; it was mango flavored. It gave me no problems with nausea/sickness, and could easily drink it within the 30 minutes for both doses. It completely cleared me out with no discomfort whatsoever, no sickness, bloating, nothing.
Went with the sedative for the Gastroscopy/Colonoscopy and they gave me midazolam/fentanyl. Tis a funny situation where you have no idea you have been given anything, and it does not make you "out of it" or think you're trapped in your own body and can't do anything. I had no recollection at all if I had slept or what, all I remember is the beginning when they initially inserted the Gastroscope and the initial part of the Colonoscopy.
It all went fine, just a bit of gagging with the Gastroscopy and a bit of bloating with the Colonoscopy, but I only really remember the first 5/10 minutes before I was back in the waiting room where I felt completely fine.
The report showed everything was normal, and in the notes he said "vessels visible, some mucus, see what biopsies show". After months of worrying, and the anxiety of them rushing me through for the scopes I guess it's not anything too serious, but I expect the biopsies to show something. I think I heard him in the background say something like "a bit of colitis"
It could just be IBS. Fingers crossed it is something temporary for you.
When I had my first oscopy the nurse said out loud "Oh you poor thing" I'd been suffering for 18 months of going to the toilet every 10 mins. Working driving nights meant if I had an accident I was sitting in it for 8 hrs... Was getting pretty despondent having a diagnoses was a positive for me.
3 days on steroids and I was symptom free, crazy how quick they started to work..... Someone forgot to take me off them and about 12-14 months later I was still on them.
When I had my first oscopy the nurse said out loud "Oh you poor thing" I'd been suffering for 18 months of going to the toilet every 10 mins. Working driving nights meant if I had an accident I was sitting in it for 8 hrs... Was getting pretty despondent having a diagnoses was a positive for me.
3 days on steroids and I was symptom free, crazy how quick they started to work..... Someone forgot to take me off them and about 12-14 months later I was still on them.
Soldato
I remember the relief of being given steroids too. They are incredible. Months of suffering turned around in days.
Soldato
What happened???
Scan went ok but I was really unwell due to being anemic and my colon was badly inflamed and at risk of perforation. I was struggling to keep anything down so they admitted me and put me on high dose IV steroids and Iron infusions. I was diagnosed with severe Ulcerative Pancolitis.
Was the worst I was until just before my surgery 10ish years later.
Soldato
Oh sorry to hear that. Hope they can get you on the mend now.
Had surgery now mate just over 2 years ago. Best thing I ever did as I get very little symptoms of colitis now.
Soldato
I've recently been diagnosed with Pan UC, after spending 4 years going to the toilet 15 times a day and bleeding so much that I ended up severely anaemic with a resting heartrate of 130 bpm and getting out of breath just walking up a single flight of stairs. I've now been on 3g of Mesalazine for about 2 months and its been a life changer, toilet just once a day, no bleeding, no pain, and no discomfort.
However, all this has taken a toll on my liver and it looks like I'm going to be diagnosed with primary cholangitis sclerosing which is a result of UC. I had an MRI scan about 3 weeks ago so I'm now just waiting for my results. Unfortunately its terminal and the only treatment is a transplant and even then it can return.
However, all this has taken a toll on my liver and it looks like I'm going to be diagnosed with primary cholangitis sclerosing which is a result of UC. I had an MRI scan about 3 weeks ago so I'm now just waiting for my results. Unfortunately its terminal and the only treatment is a transplant and even then it can return.
I also have pancolitis and primary sclerosing cholangitis. Had it for about 10 years now, honestly thought I'd have needed a liver transplant or be dead by now. I took all my meds like a good boy and over the last few years it's acquiesced, I think my liver is still on the slide slowly, but I've been off med's for my bowels for years and I go like a normal person, once a day, sometimes even longer. I take 1 ursodeoxycholic acid for my liver a day. I've sorted the rest of my diet, I eat well, exercise, and my job has a physical element, fingers crossed it's not all doom and gloom mate, you aren't alone anyway