Lost, where do i go from here?

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albear99
Regular Member


Date Joined Aug 2017
Total Posts : 33
   Posted 9/28/2017 8:11 AM (GMT -6)   
Hello everyone, im back! Hope your all feeling fin.

I Just had a fecal calprotectin test done that was slightly elevated -180
Doctor recomendend an MR enterography which came back normal.

If you look at my signature if says everything else that i have had the last 3 months.

I still have inflammation after 3 months. They found non specific colitis in my sigmoid on my first colonoscop and i am still have cramping, fatigue, loose stool 2x a day, and my anus had been bright red for a month now.

After the MRE my GI said wait and see.

What could this be? Can i still have chrons after a "Clean" colonoscopy and MRE.

Any suggestions would help, Should i ask for any meds? Thank you.
23yo M, No dx yet
1009 fecal calprotectin - no pathogens, ect
Blood work normal
Colonoscopy "99% normal" - small patch NSAC in sigmoid.
Everywhere else (rectum, transvese., assending, cecum ,TI) all maco and microscopicly normal from biopsy
Upper endoscopy - gastritis. (No H. Pylori) ( related? Idk)
Current symptoms: malaise, frewuent abdominal pain, 2 Soft Bm a day. Started as D 4-6x day

eleanor_rigby
Regular Member


Date Joined Sep 2016
Total Posts : 32
   Posted 9/28/2017 2:43 PM (GMT -6)   
When I was diagnosed my fecal calproctectin was 65, CT scan was normal, MRE was normal but my colonoscopy showed ulcers. I have heard of people being diagnosed after a pill cam when their colonoscopy was normal.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9923
   Posted 9/28/2017 4:52 PM (GMT -6)   
Since you still have symptoms and a small patch of colitis, I'd ask if you can try mesalamine. It can't do any harm. I don't think you have Crohn's, but talk about it with your GI.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

albear99
Regular Member


Date Joined Aug 2017
Total Posts : 33
   Posted 9/29/2017 2:08 PM (GMT -6)   
Thanks nice cup of tea. They didnt see any ulcerations via colonoscopy nor MRE, which my GI said is prefered scan for IBD. And more accurate than a pill cam, althoufh he gave me the option of either or. He wants to play the waiting game now, but i dont really want to lol. He said he would recomend waiting a month to see if i improve, as he suspects post infectious ibs once again. Then we could pull out the "big gun meds" as he called it. He also said i could try a round of rifaximin antibiotic. Please gove me your thoughts on this. Eleanor, i had no ulcers , infact he went as far as saying 99% was normal besides a couple red specs. Wierd how the first calprotectin level was so high, the clear tests lead him to beleive it was a bad infection that passed, leaving some residual inflammation.
23yo M, No dx yet
1009 fecal calprotectin - no pathogens, ect
Blood work normal
Colonoscopy "99% normal" - small patch NSAC in sigmoid.
Everywhere else (rectum, transvese., assending, cecum ,TI) all maco and microscopicly normal from biopsy
Upper endoscopy - gastritis. (No H. Pylori) ( related? Idk)
Current symptoms: malaise, frewuent abdominal pain, 2 Soft Bm a day. Started as D 4-6x day

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9923
   Posted 9/29/2017 3:28 PM (GMT -6)   
You could try Rifaximin. Mesalazine is milder and has also been successfully used for post-infectious IBS, so I would be inclined to try that first. I must be honest, I don't know a lot about rifaximin. I would try one; if that doesn't work, then try the other. The mesalazine does take a couple of weeks to start working, whereas rifaximin probably is much quicker.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14992
   Posted 9/29/2017 8:07 PM (GMT -6)   
albear, I think like NCOT, I would so a round of Rifaximin. You have nothing to lose & this may be just what you need to get well.
Susie
Moderator in Chronic Pain & Psoriasis Forums

eleanor_rigby
Regular Member


Date Joined Sep 2016
Total Posts : 32
   Posted 9/30/2017 12:19 AM (GMT -6)   
I agree the mesalazine would be a good shout as if it doesn’t clear up your symptoms then you know to get your small bowel tested (as that medication just works in the colon). While an MRE and CT scan can see your small bowel they may not pick up superficial ulcers and inflammation as they did not for me.

albear99
Regular Member


Date Joined Aug 2017
Total Posts : 33
   Posted 10/2/2017 8:49 AM (GMT -6)   
Thank you everyone, rifaxamin it is! 2 weeks three times a day. I'll check back to let you all know how it goes. Eleanor, i dont think my insurance would cover a pill cam at this point with all the previous test "clean", gradual improvement, there might not be a diagnostically nesesity and my GI prolly wouldn't push the insurance company for it. I think if they were to worsen then pill cam would be the next way to go. UGH already so much money on all thiis and tome off feom work. If not the antibiotic ill gove mesalamine a try. Thank you again
23yo M, No dx yet
1009 fecal calprotectin - no pathogens, ect
Blood work normal
Colonoscopy "99% normal" - small patch NSAC in sigmoid.
Everywhere else (rectum, transvese., assending, cecum ,TI) all maco and microscopicly normal from biopsy
Upper endoscopy - gastritis. (No H. Pylori) ( related? Idk)
Current symptoms: malaise, frewuent abdominal pain, 2 Soft Bm a day. Started as D 4-6x day
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