Finally more tests!!

[KatieTiz]

Hi. I posted in here a few months ago when I was due to have sigmoidoscopy. I suffer from an array of symptoms which I won't go into detail about but if you want to know I'll be happy to share!
Anyway my sig scope didn't reveal anything except a twisted colon, which made the test quick difficult & I was awake for it all -ouch! A biopsy was taken which came back normal.
I had to wait 2 odd months for my follow up appt with my G.I with my symptoms getting worse as time went by. My G.I decided to try me on a treatment of meds for IBS. I was on these for 3 weeks and they did nothing and I was still getting worse so I got an earlier appt to see my G.I again.
Well that was today, I told him I felt so terrible and this illness had full control of my life. He said he was going to refer me to a dietician. I asked for more tests to be done first. Cue me breaking down into tears! He apologised & said he didn't realise my symptoms were that severe. He's put in for me to have a small bowel follow through and a white blood cell scan.
I am a research nut so obviously I have read about the SBFT but I have never heard of this WBC scan?! Has anyone had any experience with these tests? I don't know what to expect.
I feel relieved that he listened to me has put me through for tests. Hopefully I won't have to wait long!
Thank you for reading my little update.

 

[dannysmom]

Hi -
There is a stool test for white blood cells - perhaps that is your doctor is planning?. (ie fecal calprotectin)
Have you have a full colonoscopy and endoscopy? Sounds like you only had part of the colon checked.
Have you had blood tested for CRP and ESR?

 

[KatieTiz]

Hi, thanks for your reply.
Nope he definitely said the scan, he mentioned something would be injected into me.
I haven't had a full scope only a 3rd of my large colon checked. Nor have I had an endoscopy.I had bloods taken back in like August, which I believe came back normal. None taken since.

 

[StarGirrrrl]

I've had a WBC scan, they take your blood, extract the white blood cells and tag them with nuclear material (which is attracted to inflammation) then re-inject the blood back into you and give you a scan. To look for any "hot spots" ie places the material has been attracted to and sticks on, indicating inflammation.

 

[KatieTiz]

I've had a WBC scan, they take your blood, extract the white blood cells and tag them with nuclear material (which is attracted to inflammation) then re-inject the blood back into you and give you a scan. To look for any "hot spots" ie places the material has been attracted to and sticks on, indicating inflammation.

Nuclear material! This all sounds very 'The Incredible Hulk' lol.
What was the outcome of your test?

 

[StarGirrrrl]

They found inflammation in my intestines, did loads more tests, nothing more found then a crappy GI got Radiology to declare it normal after all. No kidding i'm sorry to say.

I did have a PET/CT scan last year which is the best there is, which didn't find any inflammation anywhere, so who knows maybe the WBC scan for me was a fluke.

But I am something of a medical mystery, consistent inflammation found in blood, but they can't find anything with other tests, didn't respond to steroids either meant to act as anti-inflammatory, my inflammation markers were higher after the steroids than before lol.

 

[juljul]

Hi KatieTiz and all following and contributing to this thread,
The WBC scan sounds interesting. I have never heard of it until now though i have spent many hundreds of hours in research because of being undiagnosed too. Something new to research

Stargirrrl i would not think the WBC scan was a fluke, because inflammation can be up and down and depends on so many factors..some known, and some unknown or they would solve it all, i would think. You must be what they call a steroid non-responder. i read an interesting article once about a cytokine that is important for steroid response, I'll see if i can find it and post back.

My ESR and CRP are always frustratingly "normal" - though i have just been disgnosed with a chronic inflammatory disease of a different kind (auto-immune) and have widespread tendonitis (inflammation of tendons) most of the time, etc. How can they say i don't have inflammation... Gee (e.g. my GP) :ymad: We all get more and more inflammation as we get older anyway - it's fact. Bloods can be unreliable for sure. Too many factors influencing these inflammatory markers in some individuals unfortunately - hindering diagnosis!! :ybatty:

Keep strong and stay positive everyone.
juljul xx

 

[Ihurt]

I agree, blood tests are not at all very reliable. I have been sick with a lot of health issues this past 9 years. I am not even diagnosed with crohns, I am still trying to find out what it wrong for the last two years with all my intestinal pain. My gastro doctor also seems to think IBS. I dont think so though.

But as ar as C-reactive protein and sed rate tests, well put it this way, for the last 7 years my tests were elevated on and off. Since I have started having all these intestinal issues now they are back to normal!! Go figure. These tests are not reliable or useful, that or I am just a wierdo and my body has no clue what it is doing!

Hi KatieTiz and all following and contributing to this thread,
The WBC scan sounds interesting. I have never heard of it until now though i have spent many hundreds of hours in research because of being undiagnosed too. Something new to research

Stargirrrl i would not think the WBC scan was a fluke, because inflammation can be up and down and depends on so many factors..some known, and some unknown or they would solve it all, i would think. You must be what they call a steroid non-responder. i read an interesting article once about a cytokine that is important for steroid response, I'll see if i can find it and post back.

My ESR and CRP are always frustratingly "normal" - though i have just been disgnosed with a chronic inflammatory disease of a different kind (auto-immune) and have widespread tendonitis (inflammation of tendons) most of the time, etc. How can they say i don't have inflammation... Gee (e.g. my GP) :ymad: We all get more and more inflammation as we get older anyway - it's fact. Bloods can be unreliable for sure. Too many factors influencing these inflammatory markers in some individuals unfortunately - hindering diagnosis!! :ybatty:

Keep strong and stay positive everyone.
juljul xx

 

[juljul]

They found inflammation in my intestines, did loads more tests, nothing more found then a crappy GI got Radiology to declare it normal after all. No kidding i'm sorry to say.

I did have a PET/CT scan last year which is the best there is, which didn't find any inflammation anywhere, so who knows maybe the WBC scan for me was a fluke.

But I am something of a medical mystery, consistent inflammation found in blood, but they can't find anything with other tests, didn't respond to steroids either meant to act as anti-inflammatory, my inflammation markers were higher after the steroids than before lol.

Stargirrrl, I forgot to say I am the same with NSAIDs and steroids too it seems. I believe Ibuprofen taken for tendonitis triggered my possible Crohn's Disease, edit: -> or just worsened what was already in development because I did have some GI issues beforehand though. If I take Ibuprofen now it makes my gastritis flare and flares the rest of my GI system more. I was given steroid suppositories when my anorectum pain was at its worse and these made it even more unbearable. And with anal itching and redness I never got any relief with a steroid cream - it was worse. I read many Crohn's patients can't take NSAIDs. Not sure about steroids.

KatieTiz, I hope you don't think I am hijacking your thread. Is not intended, hugs...
I hope we can all solve what is wrong with us and get relief (ameen, amen)...

 

[KatieTiz]

I don't think that at all!
It's horrible living day to day in pain & not knowing for sure what is causing it
I hope we all get better real soon <3