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Fecal Cal test questions

Johnny's Fecal Cal in July was 586 (normal is >=50). He was retested in October and it was 430. I just sent in a sample yesterday and waiting to hear what his current level is. I know the GI is considering taking action if it is still high, but I am not sure what that will be.:shifty:

My question is, if you continue to have the same fecal cal number and it is not getting higher, is there damage being done? Would the number get higher over time as damage occurred and if so how long do you think it would take to see changes in the fecal cal number? If his number is still in the 400 range is it safe to assume no further damage is occurring? Our GI said he doesn't like to see numbers over 300, Johnny is at a level that makes them uncomfortable but I am not sure if it is high enough to change meds. Any thoughts???
 

my little penguin

Moderator
Staff member
Has he had any other tests done?
MRE or scope???
I would think that if it continued to be elevated then they would evaluate it further to determine the extent etc...?
At least that was what we were lead to believe.
That FC monitors if it stays high then they have to look by other means
We were also told true flares would be a lot higher ( thousands )
And low lying inflammation would be in the range you described.

Hugs
 
That's a good question. I have no idea. I look forward to seeing what other's say.

Dr K now does Fecal Cal regularly. I just took Grace's in today.

Did they tell you how long it takes to get the results back?
 
C's FC levels agree with what MLP said above. When C was in a known flare with typical symptoms(mouth ulcers, night fevers, joint pain etc) his level was 1700. Earlier this year when he was having symptoms but not typical ones the FC level was 300 and the scope and MRE done at that time showed low level inflammation.
 
MLP, scopes and MRE were done at diagnosis in October 2011. New GI won't repeat them for 10 years unless there is a reason to. High fecal cal might be reason enough, but he hasn't said yet. His labs are all excellent. But the Sed rate is a 10 (range 0-10). It was an 8 in August, and 10 in Nov, 10 in Jan and 10 in April. It is normal range but high normal.

FW- Our nurse said to have the fecal cal done at least 10 days before Johnny's appointment so the results would be back before he saw the Dr. So I am assuming that it should take no longer than 10 days. (She said business days) Glad to hear Dr. K is using the Fecal cal now :)
 

my little penguin

Moderator
Staff member
I could see scope waiting ( maybe) but we have had three ( 2 prior to dx) and one last June . He was dx at the same time sept 2011.
Ds has had tons of imaging. SBFT, 2 CT scans and one MRE.
I know our current Gi likes imaging/scope prior to med changes to know where we started and then has comparisons of where we are going.

That said minor changes like remicade to humira we will not do anything extra.
 

crohnsinct

Well-known member
Ah Johnnysmom...you are playing our favorite game...outguess the GI.

Sorry I have no advice as our doc doesn't do FC tests. I really really hope it comes back low!
 

Tesscorm

Moderator
Staff member
I would ask what are the risks/consequnces of allowing low level inflammation to continue ie scarring, malabsorption, narrowing due to inflammation, etc.

Re imaging, Stephen had an ultrasound, sbft (I think??? It was an X-ray with barium) and scopes. Since diagnosis in May 2011, he has had MREs almost every six months. He had another scope in Jan but that was due to being transferred to a new GI and the plan to add remicade (so not just a 'follow up' scope), however, GI just said he wants another MRE in August and another scope over the winter. However, I'm not sure what 'routine' imaging follow up would be as, since May 2011, Stephens been transferred to a new GI and added remi - both reasons likely to trigger extra imaging.
 
Location
Canada
Johnnysmom we are in a very similar position at the moment. My son had a fecal calprotectin done last May and again in September. In May it was <100 but in September it was 317. We are getting another one done in the next week to see what the number is now. GI said if it is high (he didn't say how high it had to be) he would think about scoping again to see what is going on. I will let you know what happens.
 
That was a good question. Never thought about it that way - if the levels stay around the same, is their no more damage being done. FC is the only test that we can use to show whether Andrew is getting any better or worse it was 1600 then came down to 160 now back up to 650. I would think if numbers don't increase significantly then things aren't getting any worse.
10 days sounds great to get a FC result back - it takes 6 weeks in the UK :yrolleyes:
 
Johnnysmom, SED of 8-10 sounds fantastic!!!! Does he have symptoms with such a low SED? Our GI does flips if we get around 14. Was 10 ONCE...1st time on prednisone.
 
Brian's mom- He has no symptoms currently. His Sed rate at diagnosis was 36- range on that test was 0-15. Six days after starting prednisone it was a 10 (0-15 range). The lab at Cincinnati Children's uses a different range so now he is a 10 out of 0-10. This doesn't concern me on it's own, I am just thinking in context of the fecal cal too. Johnny was losing weight for 2 years before diagnosis and 6 months before diagnosis had a sed rate in normal range. My concern is more that there is some low level inflammation that will produce damage over years. His GI won't scope for 8 more years yet so I guess I am just trying to put a picture together of what is normal for Johnny over time. I think his GI is doing the same as he said this next fecal cal result was an important one.

What I am trying to wrap my brain around is if Johnny is still in the 400-500 range and has been that way for a year, does that me he is stable? If the fecal cal number is not going up does that mean that the inflammation that is there is not producing more damage, and should the fecal cal number rise if a low level inflammation is causing damage? I am even confusing myself!! But I will ask the GI when we go in on April 30 and let you all know what he says.

Sascot- 6 weeks!!!!! How does a delay like that happen? I would think they need to test the sample within a few days of receiving it or it would not be accurate. Hmmm. That would be very frustrating.:ybatty:
 
True about SED being a crude test. Brian has had SED of 80 and normal CRP before. Good to stay on it Johnny'sMom. I agree about staying ahead of any possible damage for his future. Sorry I can't help with Fecal cal test. Our GI won't do one. One thing you said, your GI won't scope for 8 more years. That sounds like rules for someone without crohns. I'd press that too at your appt. Hope you get some good answers on the 30th. I'd like to know what you learn about the Fecal cal.
 

DustyKat

Super Moderator
Johnny's Fecal Cal in July was 586 (normal is >=50). He was retested in October and it was 430. I just sent in a sample yesterday and waiting to hear what his current level is. I know the GI is considering taking action if it is still high, but I am not sure what that will be.:shifty:

My question is, if you continue to have the same fecal cal number and it is not getting higher, is there damage being done? Would the number get higher over time as damage occurred and if so how long do you think it would take to see changes in the fecal cal number? If his number is still in the 400 range is it safe to assume no further damage is occurring? Our GI said he doesn't like to see numbers over 300, Johnny is at a level that makes them uncomfortable but I am not sure if it is high enough to change meds. Any thoughts???
In my own mind I would say yes, there is damage being done.

I agree that he is stable, he has moved from an acute phase to a chronic phase of inflammation and the 6mp is keeping him on a even keel but it's not pulling that chronic inflammation back and putting him into remission.

I tend to look at it this way...say you could picture crohn's on your skin (as you can mind!). So you have a wound and you start treating it with a product, it starts to get better, you keep it clean and infection free and it continues to heal until it reaches a certain point and then it plateaus...it doesn't get better but it doesn't get worse either but all the while it is there trying to heal. The edges of the wound start to hypergranulate because of the inflammatory process being present for so long and scar tissue results. So although the status quo is being maintained damage is still being done as the normal healing process isn't taking place. I hope that makes sense!

Dusty. xxx
 

AZMOM

Moderator
6 weeks!!!!!!!! Ours is 3 days in backwoods Kentucky :ybatty:.

We've not been able to get Claire's below 400 except one stinking time. We've had >2500, 684, 586, 277 (had a party for that one), 486, 636. I've made a line chart of them (like that's going to help anything).

Scope is today, it will be interesting to see what's in there and what the biopsies show. :yrolleyes:

I hope you have a clear path soon!!!!!

J.
 
Thank you Dusty, that does make sense.

I just got the fecal cal test back last night. The lab automatically emails the results to me at the same time Johnny's Dr gets them. It was a 64!!!!!!!!!!!!!!!!!!!!!!!!!!!!:poop:I am so happy I could cry, dance, and scream!!!!

The only thing we have changed is that the new GI took Johnny off Allopurinol and doubled his dose of 6mp. Still waiting on 6mp level but it was good last time and liver profile looks good too. It has taken 1 year and 6 months to get here but here we are! I am going to enjoy it, however long it lasts!



:dance::dance::dance::dance::dance::dance::dance:

We meet with the GI on April 30th. I will let you all know his thoughts. Thank you!!!
 

DustyKat

Super Moderator
Yeehaw! That is fab! :yoshijumpjoy::yoshijumpjoy::yoshijumpjoy:

I so hope the downward trend with FC continues...fingers, toes and everything else crossed!

Good luck and well wishes with the appointment...:goodluck:

Dusty. xxx
 

CarolinAlaska

Holding It Together
For us the fecal calprotectin is the only marker of Jae's inflammation. It was about 693 at diagnosis, and went to 91 after 8 weeks of EEN. I think numbers in the 400s would probably mean some chronic damage... but I'm no expert.
 
I've been away but just came across this thread and caught up! Woohoo on the results!! I know you must be over the moon!!
 
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