Fecal Calprotectin question

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gumby44
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Date Joined Nov 2007
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   Posted 10/26/2015 1:34 PM (GMT -7)   
I had my visit with my GI and he agreed to order a fecal calprotectin test for me. He has never ordered it before so he needs to call me once he gets instructions as to how to send it out to Mayo clinic. (our local lab doesn't do it) Does anyone know if it matters if the stool sample is formed or loose? I know with c.difficile testing the stool needs to be D. Thanks!
56 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, and again 10/14.

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.

NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 10096
   Posted 10/26/2015 1:43 PM (GMT -7)   
I've never heard of it mattering and I'm 99% sure it doesn't matter, but if you're still worried about it I'd get your GI to ask the Mayo clinic.

I'll be quite curious to see what your result is!
Dx Crohn's in summer of 2000. (Yay skull)
Tried and failed: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, various diets.
Had surgery Feb '13 - subtotal colectomy with end ileostomy. First thing to put me into remission in 13 years.
Had second surgery 10th July '15 to reverse the stoma and connect the ileum to the rectum. Feeling rough.

gumby44
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Date Joined Nov 2007
Total Posts : 4392
   Posted 10/26/2015 3:09 PM (GMT -7)   
Thanks NCOT. I really do suspect that this is all IBS but I think I'd feel more re-assured if the calprotectin number is low. I am also going to re-start the Pentasa. I know it doesn't help Crohn's from spreading, but it did seem like my symptoms were better when I was taking it and I didn't have any side effects. I've got a ton leftover, so it seems worth a try. I also found an article that indicates that mesalamines might help IBS, so I thought it was worth a try. My doc also wants me to have another abdominal x-ray to see if I'm really constipated, but having small amounts of D. If that's the case, it's back to my slow motility issues as the cause of symptoms. So at least we are trying something, which is encouraging. Here's the article on IBS and mesalamines: http://www.medscape.com/viewarticle/773450

What's up with you??
56 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, and again 10/14.

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.

NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 10096
   Posted 10/26/2015 5:12 PM (GMT -7)   
For whatever it's worth, my calprotectin was 59 after my first surgery and 1338 now: I'd certainly be more reassured by a low number now than I was back then. As for the Pentasa, it can't do any harm. It's worth trying it if it may help.

I sometimes have that constipated-but-passing-lots-of-titchy-BMs feeling. I don't think I can be constipated, unless I really do have a stricture. It's annoying. It was so much easier when I was going 3-5x a day instead of about quadruple that. As for what's up with me: I'm bone-tired right now <_<. On the verge of going to bed. Had a better day than average, at least up until dinner. I've virtually decided I want to go back to an ileostomy. I only have a 'good' day if I get enough sleep, which I don't most nights. And the 'good' day only lasts for as long as my bowels are relatively empty. My quality of life just sucks right now. I don't even know if I have the desire or the patience to try the MAP therapy anymore (mind, it doesn't help that getting a blood sample is proving to be harder than getting blood out of a stone... oh wait, I have an idea...).

I couldn't view that article directly, it takes me to a log-in page. I've come across this with medscape before: non-members can only access articles through the google results page. So to anyone who wants to read it, just do a search for medscape 773450, then click on the first link that isn't an ad.
Dx Crohn's in summer of 2000. (Yay skull)
Tried and failed: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, various diets.
Had surgery Feb '13 - subtotal colectomy with end ileostomy. First thing to put me into remission in 13 years.
Had second surgery 10th July '15 to reverse the stoma and connect the ileum to the rectum. Feeling rough.

scifigal2k
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Date Joined May 2012
Total Posts : 3321
   Posted 10/26/2015 5:39 PM (GMT -7)   
Have you done any other stool samples, like salmonella or e. coli?
CD, gastroparesis, fibro, arthritis, GERD

Remicade

"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong." 2 Cor 12

gumby44
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Date Joined Nov 2007
Total Posts : 4392
   Posted 10/26/2015 8:12 PM (GMT -7)   
Yeah, all of my stool tests were negative. After I took the Cipro at the end of summer, my major D settled down, but I have been struggling ever since with a lot of bloating, lower pressure pain, and D or very soft stool. I don't have the right sided pain like I did prior to surgery when my ileum was inflammed. I really don't think the Crohn's is back, but I don't want to be an idiot and ignore symptoms, especially because I am currently on no maintenance meds. I know Pentasa doesn't help Crohn's from spreading, but I'm hoping it might help symptoms.

NCOT....I hope you can hang in there until you at least get your MRI before you make a decision about surgery....I still keep hoping there is a treatment they can do.
56 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, and again 10/14.

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10096
   Posted 10/27/2015 4:28 AM (GMT -7)   
Thanks, gumby. I'll certainly wait for the MRI - I'm not seeing the surgeon until after that anyway. If the inflammation is mild, I'll be more likely to have a go at treating it. If it looks grim inside, then... I dunno. I'm not prepared to piss about with steroids and immunesuppressants for months on end, although if I can get hold of Entyvio, I might give that a go.
Dx Crohn's in summer of 2000. (Yay skull)
Tried and failed: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, various diets.
Had surgery Feb '13 - subtotal colectomy with end ileostomy. First thing to put me into remission in 13 years.
Had second surgery 10th July '15 to reverse the stoma and connect the ileum to the rectum. Feeling rough.

pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1680
   Posted 10/29/2015 5:29 PM (GMT -7)   
I have had many FCP tests. Some during bouts of c-diff where stool was like water so I don't think it matters at all.

I hope you are doing better! Hugs!
Dx:Ulcerative Colitis March 2008
Dx: Crohns May 2008
Avascular necrosis bilateral knees from Prednisone. Surgery on left knee Oct 2011, Right knee April 2013. 8 blood transfusions, SVT, Anxiety due to past reactions. C-diff, pancreatitis and metabolic acidosis from medication.Currently on Lialda, Ambien, xanax(prn) D3, probiotic, Rowasa, Cimzia Azathioprine, Vancomycin

HabsHockeyFan
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Date Joined Jan 2006
Total Posts : 3143
   Posted 10/30/2015 8:08 AM (GMT -7)   
Gumby was thinking of you.....
I still take Pentasa...although not as much as actually prescribed. I too know that is often bashed as being of no use or little use, but I do see a difference if I totally stop it. It may not help many of my symptoms, but I feel less lower right abdomen pains and less C or backup with it. I would definitely try it if it helped in the past.

Hoping you are back to your normal soon!

gumby44
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Date Joined Nov 2007
Total Posts : 4392
   Posted 10/30/2015 2:55 PM (GMT -7)   
Thanks p-medic and Habs....I started the Pentasa. I can't tell difference yet, but my memory is that it takes several weeks. I have a ton of Pentasa left over, so I'll take it till it runs out and then decide if it is worth it to re-fill. Still waiting to hear back from my doc about the fecal calprotectin. He's never ordered it before and needs to figure it out.

Habs....How are you doing???
56 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, and again 10/14.

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.

HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3143
   Posted 11/3/2015 2:19 PM (GMT -7)   
gumby....still trying to get back to the old me. Work has caused some stress and depression beyond how bad it has been in the past (I am considering a visit to HR even though that means I am never going to be able to stay with this company). Mostly my issues are neuro due to B12 and anemia. A lot of joint pain and exhaustion. I am using a cane sometimes just due to the pain. See my GI tomorrow and I am hoping we get a better fix than what we are trying now (b12 every 4 weeks). I could have gone out as Casper on Halloween without a costume---assuming iron infusions are a possibility. Same junk different day......muddle through and find my happy place.....hoping being Mrs Claus again this year will help move me forward.

gumby44
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Date Joined Nov 2007
Total Posts : 4392
   Posted 11/3/2015 3:35 PM (GMT -7)   
Sorry Erin. Was there a cancer history or a reason you can't take biologics? I seem to remember something like that. Does a visit to HR mean you will ask for a FMLA leave of absence? I'm so sorry you are having such a rough time with work on top of grief. Do you have a rheumatologist on board?

I've called my GI office twice, but my doc still hasn't called back with the fecal calprotectin order....it's irritating, but I'm plodding along.

Keep checking in now and then....I miss you!
56 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, and again 10/14.

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.

HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3143
   Posted 11/5/2015 1:57 PM (GMT -7)   
Gumby...I miss you too.

The cancer history is sort of there. It was just the kicker of not trying biologics until I really needed them....Father had leukemia but unsure if it was genetic, grandfather had old age cancer, suspect Mom had cancer but could never get a straight answer since it happened when I was <16 years old, skin cancer all over my family history. I am thinking I really need them now and am seriously considering Humira.
GP ordered dozens of labs yesterday (I lost count how many tubes the tech drew!). I have a referral to a neurologist--the burning pain in my palms, legs feet and mouth are really not great. After test results (see GP again in two weeks), he may also send me back to a rheumy--but not the one I saw last as he was ummm not someone I trusted. I thought the joint pain was b12, GP wants to make sure it isn't both b12 and RA or just b12.
I also got a referral for a counselor....odd I felt better just asking for it. I still think a new job would fix a lot of my stress and sadness....but that is not happening fast enough...so talking to someone is seeming like a good idea.

Thanks for caring!

gumby44
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Date Joined Nov 2007
Total Posts : 4392
   Posted 11/5/2015 7:13 PM (GMT -7)   
I'm so sorry you are having such a rough time....you sure don't deserve it. (not that anyone does!) Keep me updated when you get all the test results back.

I think it would be almost impossible not to have some depression and stress with all you have been through and I think seeing a therapist can only help. Fixing the medical stuff with your body would help even more, I know. Have you done any work with or read about mindfulness meditation? Some of the present-focused stuff really helps me when I'm struggling. I wish I had some magical insight or advice to offer, but it all just sucks! My heart goes out to you! Try to talk it one day at a time, or even one hour at a time if needed.
56 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, and again 10/14.

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.

HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3143
   Posted 11/13/2015 1:32 PM (GMT -7)   
Gumby...any response from your doc yet? Hoping you got some resolution.

I received a call from my GPs office and lo and behold all my tests show normal. I guess there really isn't anything wrong with me....well I am still waiting to hear back for an appointment with the neuro. I do have a followup with the GP next Wednesday. I am going to tell him that I don't care that the labs show normal. My last ER visit they said I did not have a temp (via forehead), when I threw up on the RN they took my temp the fun way and "Wow your temp is through the roof". Tests never show me as bad off as I am...so I believe my symptoms still. I have pain, I have burning hands and feet...something is not normal.

ps...I see the counselor for an initial get to know you visit on Tuesday...he gives a free initial visit to give the patient a chance to see if they are comfortable with him, and him a chance to see if he thinks he will be helpful.

Hope you are better.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4392
   Posted 11/13/2015 8:42 PM (GMT -7)   
Hi Erin,
I still haven't gotten the results. I had to call my doc's office three times and apparently he left the order at the front desk but forgot to tell his staff about it. I handed in the stool culture on Tuesday, so I'll call on Monday to see what's up. I ended out with a horrible cold and bad D, but now I am doing much better. So maybe I just had a virus brewing.

I'm glad to hear that you are trusting your own symptoms even if the tests don't show it, but I'm sorry you aren't getting any answers. Can a rheumatologist offer any help? Good luck with the therapist visit too, and thanks for checking in on me!
56 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, and again 10/14.

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
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