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Getting a faecal calprotectin test

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Posted 8/19/2014 11:34 PM (GMT 0)
After my hospital appointment was delayed for the second time (leading to an 8-month delay in total), my GP got on the case and now I'm finally getting a faecal calprotectin test from the useless ******s. Handed in my stool sample yesterday. Two week turnaround, then six months to chase the test result down - that's about par for the course for your average NHS hospital.

Hope I'm worrying over nothing and the result is negative, because I don't really want to think about the implications of going back on the medication treadmill.
Posted 8/19/2014 11:41 PM (GMT 0)
Sorry NCOT. I hope it won't really take you 6 months to get the result.

Hey, I have a question about the fecal calprotectin test.... I have been having ongoing problems with D and undigested poop since my resection in May. My local GI is thinking that it is from bacterial overgrowth and trying one week of antibiotics (Flagyl) each month and then three weeks off. The first month it didn't help at all, but he wants to try it again. I just spoke with him on the phone ( after leaving messages for two weeks---in your world that is probably normal) I asked about the fecal calprotectin test to see if it is really active Crohn's inflammation rather than bacterial overgrowth. He said that you will get elevated inflammation markers even with bacterial overgrowth, so the test won't be useful. Is that really true? I know he has never ordered the fecal calprotectin, but the U of Chicago GI told him how to do it...I'm wondering if he is just uncomfortable ordering it and making up excuses? Anyway, sorry to hijack your post, but I think you might know the answer to this one. I hope you get good results.
Posted 8/20/2014 12:17 AM (GMT 0)
I was exaggerating a tad for rhetorical effect; although last time I never got the result at all. There was nobody I could get in touch with to give me it: the IBD nurse was on sick leave for an indefinite period, my GP's surgery didn't have it in their system, and the stoma nurse told me she wasn't allowed to give me results from another department - even though I asked for them. I gave up the will to live at that point and decided I would get the result on my next appointment: which never materialised because it keeps being ****ing delayed.

As for your GI, seems like he is wrong.

www.ncbi.nlm.nih.gov/pubmed/18431069
www.ncbi.nlm.nih.gov/pubmed/22195368
www.ncbi.nlm.nih.gov/pubmed/20560844

Get him to order the FC test... ¬_¬
Posted 8/20/2014 12:38 AM (GMT 0)
Wow NCOT,
Thanks for such quick and useful info! I wish you would be my doc!!!! It took me two weeks to get my GI to call me back, so I'm not highly motivated to call him again, but I suspected he was just being lazy and didn't want to order the fecal cal test. GRRRR! His demeanor is very friendly and nice when he talks to me, but it really has felt weird ever since I got the second opinion. I know from experience though that I absolutely need a local doc on board for emergencies....Chicago is a 6 hour car ride away. Thanks for your help, and stay assertive my friend.....I hope you start calling and asking for results in two weeks. Do you want me to nag you??
Posted 8/20/2014 1:47 AM (GMT 0)
No problem, gumby!

If I was younger, I'd seriously consider training to be a gastroenterologist. Such a cushy number if you can get it. There's basically only 3 types of drugs for IBD patients: not like they have to bust a gut over thinking what to prescribe.

Generic IBD patient: Hey doc, I'm going to the toilet 6-8x a day and I get very bloated and uncomfortable after eating.
GI: Hmm, okay. Here's a prescription for a course of Prednisone and carry on with the Pentasa and 6MP.
IBD: Okay doc. Thanks...
GI: See you in 6 months' time. If your symptoms haven't improved by then, I'll consider increasing the 6MP from 75mg to 100mg!

Anyway... >.>

If you have a gut instinct (so to speak) that things have changed with your GI since you got a second opinion, then it's quite likely to be correct. He really shouldn't take something like that personally; but if he has, he's obviously trying to conceal it from you. Anyway it isn't your problem and he'll get over it; provided he doesn't sulk over being made to order the faecal calprotectin test.

Yeah, I would like to be nagged. Please <_<.
Posted 8/20/2014 5:53 AM (GMT 0)
Gumby, who is your GI at U of C?

I have had a fantastic experience so far with Dr. Rubin and his team, particularly his fellow Dr. Kinnucan. They have been EXTREMELY responsive and effective with my follow-up treatment.
Posted 8/20/2014 2:17 PM (GMT 0)
Hi Duque,
That is exactly who I saw, and they were very helpful to me as well. The problem is that I live in Northern Michigan and I was only really able to use them as a second opinion. I would love to just have them take over my care, but it really isn't feasible. I have had too many episodes where I have needed to go to the ER at my local hospital for one reason or another. My local GI has spoken with Dr Rubin on the phone and Dr. R told him how to order fecal calprotectin, but he has never done it before, and I think he doesn't see the value in it. Thanks though....I'm glad you are getting good care there!
Posted 8/20/2014 2:20 PM (GMT 0)
NCOT....I actually wrote a note to myself in my appointment book to nag you in two weeks....haven't forgotten about you;-)
Posted 8/22/2014 6:28 PM (GMT 0)
I'm getting a calprotectin test too. My new GI (yay!!) ordered it after my scope on Monday showed no disease. What!? Anyway, I'm nervous for the results. I'm having so many symptoms for my colon to be clear is mind-boggling to me. Curse this disease...curse it right to hell.
Posted 8/22/2014 6:51 PM (GMT 0)

gumby44 said...
NCOT....I actually wrote a note to myself in my appointment book to nag you in two weeks....haven't forgotten about you;-)

How did I miss this? :-/

Thanks anyway gumby. Don't forget to set a time as well - you can't arrive late for my nagging! <_<

not creative said...
I'm getting a calprotectin test too. My new GI (yay!!) ordered it after my scope on Monday showed no disease. What!? Anyway, I'm nervous for the results. I'm having so many symptoms for my colon to be clear is mind-boggling to me. Curse this disease...curse it right to hell.

Good god, do I feel your pain. I'm nervous for my results too. Not sure which is worse: to have a clear FC test, but continuing symptoms and the hospital taking me even less seriously than it does now. Or to have a positive FC test, which probably means the Crohn's really is back.

Anyway, I hope you find some answers for your symptoms. We can compare our FC results when we get them :p
Posted 8/22/2014 9:28 PM (GMT 0)
My nephew is getting married in Chicago on Oct 11. Prior to my surgery, when I was discharged from U of C, I set up a tentative follow up appointment on Oct 13. I never cancelled it, and I'm thinking that the only way I'm going to get a fecal calprotectin test is to go back to Dr. Rubin, since my GI has never used them and doesn't seem motivated at all to order one.I was going to stay in town a few extra days to visit with my dad anyway. Does this seem ridiculous? It seems like my local doc should be able to handle this....maybe I need to get more assertive.
Posted 8/22/2014 10:23 PM (GMT 0)
If you can't get your GI to order it, go with Dr. Rubin! I would try your GI again though because, depending on your insurance, going out of network could be expensive. Maybe Dr. Rubin could order the test but have it processed by your local lab to avoid costs. Either way, seems like it's good info to have!

As an aside, my wedding anniversary is October 11 too. Such a lovely time to get married!
Posted 8/22/2014 10:59 PM (GMT 0)
Happy almost anniversary! Thanks....I think I'll see what the next couple of weeks brings and I'll make a decision.
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