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Possible flare? Please help.

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Ulcerative Colitis
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Posted 12/18/2014 4:12 PM (GMT 0)
Hi guys it's been some time since I have been on.

I wanted to ask your advice I thought I was having a flare in July when on honeymoon but turned out when I got home I had camplobactyer. My calprotectin was 1060. The GI had me on steriods for 8 wks which helped. They also had me in for a colonoscopy again and had wanted to put me onto immunosuppressants azathioprine. However I asked them to wait on the results as we are thinking of starting a family. The results were ok apparently no inflammation and biopsies confirmed UC at the moment.

My previous flares have also been high at 960. I'm diagnosed with indeterminate colitis.

Recently I feel I'm flaring again I have been very fatigued, have sore joints, cracked sore lips, feeling sick and been sick after eating and still have blood in my BMs. However my calprotectin from nov came back at 20! The sample sent had blood in it.

Does this mean it's not a flare then or could it be crohns and affecting areas colonoscopy can't reach?

Oh I also have hair loss think it's my meds asacol (mesalazine)? Anything that would help this.

M, best wishes from clueless in Scotland.
Posted 12/18/2014 4:50 PM (GMT 0)
I'm not sure a fecal calprotectin result can be used the way you are using it. Isn't 20 still above normal? Your stool sample had blood in it - that seems sufficient to indicate active inflammation. What is your current treatment plan?
Posted 12/18/2014 5:01 PM (GMT 0)
Were you diagnosed with indeterminate colitis before your honeymoon? I don't think calprotectin is all that accurate for diagnosing a flare up. My GI always wants to do them but I have given a sample when I was definitely in a mild flare and it came back within normal range. It was very strange. I just don't trust that it's accurate now - seems almost pointless. Have you tried rectal meds? The only way you're going to find out what is going on is probably to have another scope, and if you suspect Crohn's, you would probably want to do an endoscopy and colonoscopy. I lost a bunch of hair when i first started Asacol but over time I didn't lose it anymore and the lost hair grew back.
Posted 12/18/2014 6:57 PM (GMT 0)
Thanks for your replies! Yes I was surprised it was as low as 20 as it's never been this low even in remission. I also thought the blood indicated inflammation but my nurse said it could be a haemorrhoid as she's going on the calprotectin. - I know it's not though. I was diagnosed with indeterminate colitis in 2012. I am also on a pentasa enema at night. I have consulted a private nutritionist and she is advising to go gluten and dairy free?

Notsicklygirl how long did it take before your hair stopped falling out?

I wasn't sure whether to suggest an endoscopy as the cinos oot results came back ok after my course of steriods?

Thanks!!
Posted 12/18/2014 6:59 PM (GMT 0)
Sorry predictive text error lol should have said the colonoscopy results were normal
Posted 12/18/2014 8:11 PM (GMT 0)
Are you not taking any oral mesalamines? That seems risky. I can't understand the timing of scopes vs. symptoms from your posts. A clean colonoscopy following steroids is meaningless if your maintenance program is not effective.

A gluten free diet is worth a try, as is a dairy free diet, but don't do them concurrently. I would not count on either one to address inflammation, but they might be good for symptom relief.

I am just coming out of a 3.5 year remission with a bit of blood in my stool and some indigestion. You can see my diet, supplements and what I'm taking daily in my signature - to combat this flare I am adding nightly Canasa. My IBD is also indeterminate.

By the way, I have found sulfazine to be very helpful in combating joint pain associated with this disease. Talk to your GI about it.

I would not accept the comment that blood is from hemmies if you also feel like you are flaring. You know your body best.
Posted 12/18/2014 8:16 PM (GMT 0)
That's a good point about getting a clean colonoscopy while on or following steroids. The results could be deceiving and short lived.
Posted 12/18/2014 8:48 PM (GMT 0)
I am on mesalamine asacol oral tablets 6x per day and the pentasa enema one at night. Yeh I thought the same that the colonoscopy results showing no inflammation was obv down to the steriods. My first scope in 2012 looked awful.

Thanks for your helpful advice.
Posted 12/18/2014 11:17 PM (GMT 0)
For me, calprptectin has always been accurate more so than the blood test showing CRP levels. It's normal for me to have a low CRP and for my stool to show active and high inflammation. I've been flaring for ten months and I'm just starting to get better. My calprotectin when flaring, even mildly, is usually >1800 which is high. For me, when I'm well or coming out of a flare it's still at around the 400 mark. They say it's never going to be low low for anyone with IBD regardless if in remission or not.

I also contracted cambylobactor about two months ago which sent my colitis crazy and I'm still on steroids because of it. Its awful isn't it?!

Hope you feel better soon
Posted 12/19/2014 1:34 AM (GMT 0)
I got a 50 one time when I was on uceris. I think normal is zero to fifty.

My hair loss went on for quite some time. I have so much hair that you wouldn't even notice though. I bet it was a month
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