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Faecal Calprotectin

Hi All, not posted for some well. I've been doing reasonably well on Inflectra for about a year albeit still with active rectal crohns.
Sadly over the last 6 weeks or so things have not been so good & after doing some samples I'm now showing Faecal Calprotectin on a scales of about 600. Not high apparently but its giving me bother again. My Specialist Nurse has got me on a 30 day course of Pred. 5mg suppositories which has slowed the bleeding to virtually nothing but I'm having some bad days again.

Whilst here I thought I'd also just tell you about a development here in UK that I'm pretty pissed off about. I used to be able to access my test results online. Finding out how my CRP was doing etc without bothering the Specialist Nurses etc. All been stopped, here in UK they dont want us patients knowing as it leads to us comparing online with others like we do on here. Frankly IMo thats pathetic & leaving people in the dark is dangerous. A baffling state of affairs I feel.
Regards
Grant
 

scottsma

Well-known member
Location
Tynemouth,
I'm sorry you're not doing so well Grant,but hopefully the pred.will do the trick.Although 600 is not too high,it does indicate some inflammation,but you know that already.I hadn't heard about the on-line problem.I can see their point somewhat though.My doc.is always amazed at my understanding of my illness.Gone are the days when you walked into the surgery, and accepted a prescription without a murmur and were out in 5 mins.We like to get into a discussion / argument of why,side effects,interaction etc.and they just don't have the time now....Feel better soon.
 
Wow, I never knew you could view your own results online anywhere in the UK! That would make life so much easier. I can currently only find out at appointments because the gastro secretaries can't discuss results over the phone - they won't even give you the figure if you ask for a specific test result.

I understand they don't want to be badgered but at the same time we do have a right to know what's going on. My consultant said she wanted to see me in 2 months after my last appointment. That works out as in 2 weeks time and I haven't even had an appointment sent through yet. Guess I'll have to keep ringing up every day to chase it for 3 weeks like last time. I wouldn't even mind but I'm waiting for a decision as to whether or not I'm going on a biologic as azathioprine has failed.

So frustrating, I totally feel your pain!!
 
Hi Sophabulous, if you use Patient Access like I do then log in & just go to test results. Used to be very up to date info on blood tests etc. Now cant go back further than March.
Rgds
Grant
 
Hi Sophabulous, if you use Patient Access like I do then log in & just go to test results. Used to be very up to date info on blood tests etc. Now cant go back further than March.

Rgds

Grant


Thank you, I do use that but never stumbled across any test results on the app. Off to explore now!
 
Hi all, been a very stressful time for me & as usual my Crohns has really reared up again. Basically my Mother has endured a terrible run of ill health including multiple mini strokes. Why cant I let these things wash over me like others do. Either way Its caused me a few mental health problems as well, been having anxiety attacks & feelings of depression that thankfully have gradually subsided but really a very difficult time. Just done a stool test & I should know the results in a couple of weeks.
My god this disease & ALL its side issues is so damn complicated.
Rgds
Grant
 
Grant:

My Mom (95) lives with me and of late isn’t doing well. It definitely stresses me; I can’t imagine how it wouldn’t. While it has led to some increased intestinal pain and cramping and my appetite is nil, I don’t know how I could deal with it any better, unless I stopped caring which would also be awful. I hope your Mom’s Heath improves—and yours too.
 

scottsma

Well-known member
Location
Tynemouth,
It must be so difficult caring for elderly parents.It's as much as we can tolerate living with crohns.My parents both died in their 60s,before Crohn's ,and honestly,I often wonder how I would have coped in both your positions.But of course,we do what we have to do,and we can.I wish my folks were here so I could prove it.

Respect to you both.Feel better soon and have a peaceful Christmas.
 
Thankyou both Jabee & Scottsma, my Mother actually lives around the corner from me with my Father. But both are very elderly & all the time she was in hospital it was up to me or my Wife to get my father over there & back. The majority of the time it was myself, I have a brother but he lives further away & frankly isn't much use in these sort of circumstances.
Rgds
Grant
 
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