IBD nurses have phoned me twice asking me to do a blood test

[eleanor_rigby]

Hello,

I am on azathioprine (50mg since April 2016 and upped to 75mg in March 2017). I get my bloods checked every few weeks, last time I got them checked on 11th April. I have received two calls this week now from the IBD nurse asking me how long I've been on my azathioprine, when did I start taking it and how often I am getting my bloods done. I told them and they asked me to get a blood test done this week. I asked what my last blood tests showed and they said they were fine.

I have never been told my blood tests were anything other than fine in the past. I am not able to do my blood test until Tuesday though because I am away from where I get them done. I would not be able to get them done unless I went into a random hospital as an emergency. Really worried something is wrong due to these calls??

 

[rorho19]

Don't panic - I think they have just changed the protocol in AZA right across the NHS- I too have had lots of reminders to get tests that I have just had.
They probably got sued by someone that di dnot get checked often enough so thye have reduced the time between tests- I think form 6 months to 3 months.

By the way you are on a very low dose even if you are tiny - I am 13st and on 200mg a day and in inflamtory remission for about a year. Hoping I can reduce soon, but also facing resection for two fibrotic strictures in ileum.

RR

 

[eleanor_rigby]

Thanks for your info - that is certainly a weight off my mind. Started thinking maybe I had cancer and all sorts of crazy things!

I know my dose is low - It was a battle to get it upped to 75mg in March - prior to that I had been on 50mg for a YEAR!! I am just shy of 8 stone and 5 foot 5. My colonoscopy in April was much improved but still a couple of superficial small ulcers knocking around!

 

[DEmberton]

I was only ever told 1 week, then another after 2 weeks, then 3 months thereafter. Usually I have to remind the nurse what it's for.

Seems a bit strange you're getting the tests so often.

I'm on 100mg (and I'm 13st too). Down from 150mg because my liver results were going out of range.

 

[eleanor_rigby]

Oh right :-/ I have left a message with the nurses and said I cannot get back to take my test until Tuesday so let me know if it is safe or unsafe for me to do that. Will see what they say.

 

[rorho19]

DEmberton:

well it is of course a balance between maintaining your remission and doing damage/ side effects. I must say as a 57 yr old diagnosed 4 years ago I think the first flare or two is the worst and you can hope for an easier time as he years go by so hopefully we all get meds reduced in the long term.

I took a week off AZA three times this winter as I had very heavy flu and chest infections that kept returning..does not seem to have stopped my inflammatory remission of the last year...

 

[rorho19]

Elanor ...I am glad to year your scope showed only a couple of little spots..i recently followed your surgery posts and was so pleased when thinks turned out well, but the disturbed when you seemed to have problems a few years later. I have been referred for surgery - resection for 2 strictures in th e ileum 9 cm above the valve.

I am desperately looking for success stories form these kinds of surgeries...at least I have had virtually nil inflammation for about a year - on azathioprine. I am very scared of an op...but concede I am in much better postion than many ( in remission) except my age- I am 58 in a week.
Also I would only be having this op to stop the pain of the fibrotic strictures- not to gain remission - so hopefully this will give better chance of many years in remission afterwards.

I think one of the unfortunate things about this forum is the people who have success allot of them just disappear and go and live their lives. Human nature I suppose.

 

[eleanor_rigby]

Elanor ...I am glad to year your scope showed only a couple of little spots..i recently followed your surgery posts and was so pleased when thinks turned out well, but the disturbed when you seemed to have problems a few years later. I have been referred for surgery - resection for 2 strictures in th e ileum 9 cm above the valve.

I am desperately looking for success stories form these kinds of surgeries...at least I have had virtually nil inflammation for about a year - on azathioprine. I am very scared of an op...but concede I am in much better postion than many ( in remission) except my age- I am 58 in a week.
Also I would only be having this op to stop the pain of the fibrotic strictures- not to gain remission - so hopefully this will give better chance of many years in remission afterwards.

I think one of the unfortunate things about this forum is the people who have success allot of them just disappear and go and live their lives. Human nature I suppose.

Hey, yeah for a good three years I felt like surgery was the best thing that ever happened to me, my quality of life was so fantastic. I felt like a healthy person and my abdomen/bowels/stomach felt so great it was like I could not believe I had ever had a problem there. I worked loads, completed a masters and spent 3 months backpacking across north, central and south America, including trekking the Amazon Rainforest for 8-10 hours a day for 4 days.
The issue for me is I was not followed up after my surgery (due to misdiagnosis) so I was vulnerable to the Crohn's coming back, which is what happened. You are fortunately not in that position.
In your situation I really can't recommend surgery enough. I understand the fears but you will really never look back once it's done. My surgery was emergency so I didn't have time to worry about it like you are doing. The anxiety you are feeling now is worse than the surgery. A short week of discomfort will be well worth it for the quality of life you will gain afterwards.

 

[rorho19]

So just after your op they did not put you on maintence meds because you did not have a diagnosis?

 

[eleanor_rigby]

Yes they thought it was all due to appendicitis. So I said goodbye and went on my merry way!

 

[rorho19]

elanor - cant thank you enough for those words..

on your original blood test question - for me they are usually just checking inflamtion levels and whether your immune system is too supressed if you are on an immune suppressant..

 

[eleanor_rigby]

Thanks

You need to realise you are going to experience tremendous anxiety over this surgery, which is entirely unhelpful but understandable - it's scary and the unknown. I would recommend distracting yourself as best you can and try and recognise it's anxiety pure and simple.

I had my blood test done on Wednesday so hopefully they will give me some peace now!!

 

[rorho19]

If you already know scope results blood test is unlikely to show anything else unless you are overly supressed on meds...

anxiety - yes I understand - I had disc surgery in 2010- like you I was lucky it was emergency - did not know I would be surgery when I woke up that morning. Then you are just fighting to get back to a normal life which I did and apart from a about a week immediately afterwards the terrible pain went- never to return!