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Crohn's Disease Forum » Parents of Kids with IBD » Fecal Calprotectin Test


10-15-2013, 02:03 PM   #1
Supermom
 
Join Date: Jun 2012
Location: Kansas
Fecal Calprotectin Test

So I have read where many of you have this test done. My son had never had the test until I took some of your advice and requested it to be done a week ago (his GI does not usually test for this).

I got the results back today. While I see abnormal is >120, my son's results say >1250 with an H for high I assume.

Where do I go from here? His last blood work from last week, the CRP showed 14 (11 last month) and his sed rate has been < .5 for the last three months.

His last injection of Methotrexate was 9/27/13. He is now off of it because he says it caused him lots of emotional stress, loss of hair and body aches to where he could hardly walk. So the only medicine he is on for his Crohn's is Remicade every weeks. He refuses to do EN.

He stayed home today, crying this morning after being on the toilet for thirty minutes, saying how his butthole was throbbing. The straining and prolapse hurt him very much.

Any recommendations of what I should take for my next step? I am a single mother with another child at home as well. Traveling far away with the expenses I don't think would be an option for me. I live in the middle of Kansas so I travel about an hour and fifteen minutes to his GI. We have also traveled to another one about three hours away for a second opinion. We chose to stay with the one that lives closer but I cant really say she is doing much. She feels like she is doing all she can. I think there are many other drugs others are trying but her clinic is not approved for them, unless we travel to the other GI.

My son has better days than others, and I know he is in pain more often than not. I am at my wits end on what to do. Maybe I should just travel to the bigger hospital farther away and they would have more options? I effing hate Crohn's!!
10-15-2013, 03:28 PM   #2
crohnsinct
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Sorry Supermom I don't really have any suggestions for you. It seems to me that the high FC and the creeping CRP are pointing toward inflammation. What did the GI say about the FC test? My daughter is on REmicade and we added MTX...our doc said the Mtex would help with joint pain and it did. Weird it didn't help with his pain but what isn't weird about this disease and the different neds.

What Remicade schedule and dosage is he on? Perhaps they can shorten the interval between infusions or up the dosage...have the checked Remi levels at infusion? What dosage of Mtx was he on? Could it be he needed more to deal with the aches...but that wouldn't help loss of hair or emotional stress now would it....ergh!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
10-15-2013, 03:37 PM   #3
Tesscorm
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It really is so tough to see your child struggle as your son is. I'm sorry, I don't remember the whole of your son's story but, as far as other drugs, methotrexate is an immuno-modulator, it is similar but not exactly the same as azathioprine/imuran or 6mp (I don't actually know how they are different??). Remicade is a biologic and other options would be humira or cimzia (but, although I do know there are other children on Cimzia, I'm not sure if it has actually been approved for children??). Wasn't the case with my son but USUALLY biologics are used after immunosuppressants have been tried - has your son tried 6mp or azathioprine? My aunt used imuran together with remicade for two years and then was taken off remicade. She has stayed with imuran for the last 15 years. So, while it doesn't seem to be commonly done, it seems you can go from a biologic to an immunosuppressant. These are all typical medications for crohns - so, as far as I know, no reason why your GI's office wouldn't be approved (with the possible exception of cimzia).

Low dose naltrexone is another treatment, however, most GIs will not agree with prescribing LDN as there are few studies available showing its efficacy.

My son has never had an FC test but, from what I've learned, your son's results do indicate inflammation. Has he tried prednisone or entocort (steroids) to treat the inflammation? Most of the maintenance meds (immunosuppressants or biologics) take a bit of time to work so steroids or exclusive EN is used to alleviate inflammation immediately, while waiting for the maintenance med to reach therapeutic levels.

How long has your son been on remicade? Has the GI ever considered raising his dose or increasing the frequency? ie my son started at 8 week infusions but he was recently moved up to 6 weeks when blood tests showed no remicade in his system at the 8 week mark.

Re the pain - a friend of mine doesn't have crohns so I'm not sure if this would be helpful but... she's suffered quite a bit with hemmorhoids and prolapse for years. While it may not be very effective when the pain is at its worst, she does find using Tucks (she keeps them refrigerated) helps???

Re the EN - exclusive EN (no food) for 6-8 weeks would be necessary to eliminate inflammation but would your son even consider a week? I don't think a week is enough to eliminate inflammation but it might help to give his bowels a bit of a rest and may alleviate some of his pain for a little while.

So sorry you and your son are having such a tough time!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
10-15-2013, 03:50 PM   #4
Honey
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Hi there, yes Crohns is a rotten illness taking time to get the right meds. How often is your son on infusions ?. The test showing high figures points to the inflammation not down yet . I was. on Methotrexate injections for months and had hair loss, and felt rubbish. It did not work for me. I am now on.8weekly Remicade infusions, and after 6,.my inflammatory levels are back to normal . I am well. So, I hope Remicade works for your son. Your GI.will work put the doze of Remicade that is needed. It is worked out according to your weight. I hope your don feels better soon. Let me know.
10-15-2013, 03:51 PM   #5
crohnsinct
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Oh and one other thought...how long was he on Mtx? It does take about 3 months for it to reach fully theraoeutic levels so that might be why he was still experiencing joint pain....still wouldn't help with the stress and hair loss though. Could his CRP be creeping up because Mtx was stopped thereby requiring a tighter Remi schedule? Just thinking aloud.
10-15-2013, 04:49 PM   #6
Supermom
 
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My son was on Methotrexate for nine months. I figure the only way to maybe tell would be to have him get off and see how his labs came back and if they were to start to get worse, he knows its an option to maybe go back on.

He is at the highest level of Remicade he can go for his weight. He gets his infusions every four weeks and has been doing Remicade for a year and four months. He tried EN this summer, got through about 2 1/2 of Boost and then said enough is enough. He refuses saying he wants to eat food. I think he is going through a growing spell. He wants to eat everything. It is not all healthy either. He gained two pounds last month and three pounds this month. So he is not losing weight and he is gradually getting taller. He was last on prednisone in February when he was in the hospital. He tried Aza at the beginning of his diagnosis but the doc said he failed it. I don't remember how long he was on it.

The nurse just called and said the doctor can do another scope if we would like. His last scope was December 2012. I am going to meet with her at his next infusion and find out if we decide to scope again, what are the options after that. I feel like he is damaging so much in his body with his inflammation and his prolapse. Doc didn't think surgery would help if the Crohn's is all over. The last scope did not show crohn's in the terminal illium. He does not suffer from any type of mouth sores. He wretches every once in a while if he is straining too hard on the toilet. He has a couple days off school this week, I am going to see if he will do the liquid diet to calm his gut down a bit.
10-15-2013, 06:53 PM   #7
crohnsinct
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Ugh! Sorry about all that. My daughter is actually at adult dose not pediatric. IDK if that is what you mean about max dose for his size. She gets 1omg/kg. But UGH every 4 weeks is pretty often. The shortest interval our doc goes down to is 4. FWIW our daughter was not achieving remission with just Remicade and our doc wanted to add mtx to her treatment. She did 8 weeks of EEN and that got her to remission where she has been ever since. The mtx was added for psoriasis. If he can't drink the shakes, would he consider an naso gastric tube. Plenty of good results from a lot of the users here.

Hugs! Hopefully someone will be along shortly with some suggestions.
10-15-2013, 07:03 PM   #8
my little penguin
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If his crp and fecal is that high remicade may just not be working for him.
You could send his records and biopsy slides to a big Ibd clinic - chop Bch or cchmc
And ask they do a record review .
They could give you their opinOn.
Some have financial aid like meals and such for a trip so that still may be an option.

I would ask for a second opinOn quickly . We were told fecal numbers that high meant a flare .

Good luck
01-12-2014, 10:41 PM   #9
graphicdesignermom
 
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Location: Cornwall, Pennsylvania
I just got my son's results and they are 682. This is the first time he has been tested for calprotectin so I have nothing to compare it to but he has been on Pentasa, budesonide, omeprazole, and antibiotics since April 2013. He just took his last antibiotic yesterday -- he had been taking Vancomycin for C-Diff (two occurrences back to back). He started Imuran just over 7 weeks ago. So I'm concerned that we aren't controlling his Crohn's. Doesn't a high number mean there is still inflammation? I'm hoping to hear from his doctor tomorrow with some answers. But I'm worried.
01-12-2014, 11:00 PM   #10
Catherine
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It can take some patients a long time to get Imuran level right. In my daughter case it took 21 months to get her in range.

Where is your son's crohn's normally active?
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
01-13-2014, 06:04 AM   #11
dodie74
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My son had had 3 calprotectin tests done in 3 years. I cant recall his 1st result but the second was 650 and most recent one was 2500!!!! very high which lead to mri and scopes. They found inflammation which now means we are switching to methotrexate, im hoping this works as if theres no change in 3 months we are looking at surgery. I think the calprotectin test is a great way for detecting inflammation as my son feels well, eats really good too, only thing is he hasn't gained weight in a long time so was a different story going on inside. Best of luck. xxxx
01-13-2014, 08:32 AM   #12
crohnsinct
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Ditto what Catherine said...Imuran takes a while. From what I read around here an FC level in that range while high, wouldn't sound the red alert and since you have nothing to compare it to you may just have to wait until you can do a second test and then have some comparison. How is he feeling? Have you discussed the FC results with his doc?
01-13-2014, 09:57 AM   #13
CrohnsKidMom
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Yes, we were told a min of 3 mos for Imuran to start working. I hope you see some improvements sooner rather than later! Take care!
01-13-2014, 10:14 AM   #14
graphicdesignermom
 
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Thanks for the input everyone. I appreciate hearing what others have experienced. His Crohn's seems to be in his small and large intestine and also suffers from mouth sores and anal tags. I'm not sure I understand exactly where it is except that the biopsies showed it in many areas from the base of his stomach to transverse and descending colon. They had to stop at his transverse colon and couldn't go any further. My son has actually been on treatment for the Crohn's since April, over 9 months. It was thought that his Crohn's was under control. The addition of Imuran was to treat his Auto Immune Hepatitis (with the added benefit to treat the Crohn's). He has been feeling okay, still lethargic but I'm not even sure what normal is for him anymore. He says he feels better than in April when he was being diagnosed but he has also had recent days that he feels like he did in April. He has a very low appetite (again, not too uncommon for him) and has stopped gaining weight the past couple of months. I'm waiting for his doc at Hershey Med Center to call as well as his second doc at CHOP. When he started treatment, it seemed like he had a honeymoon period. All his levels were normalizing and he gained a lot of weight (for him) in a short amount of time. Then a lot of it started going off again. We chalked it up to the Auto Immune Hep. since some of his inflammatory markers were still normal. Hoping for more information soon...
01-13-2014, 10:30 AM   #15
Jmrogers4
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It took us a long time to get to theraputic levels with the Imuran, we kept having to adjust dosage wait for a while have blood tests see what they were adjust again but generally 3 months is the standard for it to start working. Has he had blood tests over the 9 months? What are is his CRP, ESR numbers? Are they going up, down, holding steady?
As others have said 682 is not terribly high but then my sons was only 395 or something like that in November and we switched to Remicade but we know his baseline is 90 as we did a FC when he was in remission. His FC was at 293 in September and then raised a little higher in November. Nobody would have blinked at the 395 number but since we know what his should be along with his lack of growth/weight gain we did some further investigation had an MRE and discovered narrowing/inflammation in the small intestine. So basically he was at a low simmer as we are calling it, had not reached a rolling boil. All his other tests were in the normal range.
Hope the Imuran gets to work and gets the inflammation down soon.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
01-13-2014, 10:40 AM   #16
graphicdesignermom
 
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It took us a long time to get to theraputic levels with the Imuran, we kept having to adjust dosage wait for a while have blood tests see what they were adjust again but generally 3 months is the standard for it to start working. Has he had blood tests over the 9 months? What are is his CRP, ESR numbers? Are they going up, down, holding steady?
As others have said 682 is not terribly high but then my sons was only 395 or something like that in November and we switched to Remicade but we know his baseline is 90 as we did a FC when he was in remission. His FC was at 293 in September and then raised a little higher in November. Nobody would have blinked at the 395 number but since we know what his should be along with his lack of growth/weight gain we did some further investigation had an MRE and discovered narrowing/inflammation in the small intestine. So basically he was at a low simmer as we are calling it, had not reached a rolling boil. All his other tests were in the normal range.
Hope the Imuran gets to work and gets the inflammation down soon.
He's had lots of blood tests. At the moment, his CRP is the highest his has been since we started testing in April, 2.44. His alpha 1 antitrypsin is double what it was in April when he was hospitalized (April was 55, two weeks ago it was 100). His ESR is normal and has been since May.
01-13-2014, 10:58 AM   #17
Jmrogers4
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It may be that Imuran will not be enough. If there is ongoing inflammation that will account for lack of growth/weight gain. That is our biggest clue with Jack that things are not under control. When is he due for next round of tests? Has GI discussed the next step? It is so hard when you just want to the medicines to work and work quickly. Lots of hugs to you and your son.
01-13-2014, 10:59 AM   #18
Mehita
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For more perspective, my son's first fecal cal was in the 600's and we now know that he had simmering inflammation at the time. During a bad flare he was 1332 and that triggered scopes and a med change.

I think most GI's are ok with less than 500 or so with IBD kids?

My son was on Azathioprine (sister drug to Imuran) for six months. Even though tests showed he was at therapeutic levels and he had a good amount in his system, for whatever reason, it just didn't work and he had his worst flare and labs ever while on Aza. It simply wasn't his drug and we had to move on to Remicade.

Talk with your doctor, listen to your gut. Obviously something is still going on.
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- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
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- Small bowel resection, Jan 2013
01-13-2014, 11:08 AM   #19
graphicdesignermom
 
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My gut tells me I want to look inside his body and know what is going on! I'll just keep pushing the docs. I think the biggest thing is that I know he doesn't feel great, or even good for that matter and has stopped gaining. He is growing taller, an inch and a half since April, but he is 5'6Ĺ" and weighs 106. He is 14 and should be eating me out of house and home but every meal is hard work for him and me. And he has very low bone density. So the Imuran (and actually, like Mehita's son, he is on Azathioprine) will only deplete that even more. His next set of labs are this Friday. I might move them up to Wednesday to get them before the end of the week though. I can usually see results online within an hour or so of getting them. Love our patient portal.
01-13-2014, 11:19 AM   #20
Jmrogers4
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^^^ That is why we did the MRE, we were just missing something. I could not get Jack to eat. He would eat a few bites and say he was full, he never said "I'm hungry". I think it is probably too soon to make a difference but Jack had his first loading dose on remicade Thursday and he actually ate this weekend and said this morning "I'm hungry can I have breakfast" He usually just has a Peptide shake which I force him to drink. He was 91 lbs the day of the infusion and when he weighed himself last night he was 95.6.
01-13-2014, 01:28 PM   #21
graphicdesignermom
 
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His primary GI doc has called and said for him to go to as much of a liquid diet as possible. And then we'll test again in while. The next step is more steroids and/or remicade.
01-13-2014, 02:46 PM   #22
DustyKat
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So no imaging of the small bowel has been done?

In view of the extent of disease at initial presentation I would push for further clarification as to where his disease is at now.

Budesonide is a good steroid but is not always effective in treating inflammation as it has a more topical effect than systemic like Prednisone.

Imuran too can be a very good maintenance medication but unless you are starting from a platform of remission or something closely resembling it may not have the ability to pull your son into remission without added help.

I agree with pushing for an EN diet and perhaps even ditching the Budesonide and upping to Prednisone instead. Have objective and reasonable timeframes to see positive change, if those milestones are met then all well and good, if not then get onto Remicade and get things under control.

Good luck mum my thoughts are with you. There is nothing harder in this world than having to make these decisions on behalf of those we hold so dear.

Dusty. xxx
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01-13-2014, 08:29 PM   #23
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@DustyKat, he's had an MRI and MRCP and neither showed active Crohn's. He's also had a liver biopsy, DEXA scan, abdominal ultrasound, and endoscopy/colonoscopy. The MRI was done before treatment as well so they were about to ditch the colonoscopy that we had prepped for all night (this was during his first hospital stay). But a day later they did the scopes and found inflammation in many areas. Crohn's was diagnosed based on the biopsies. It's just odd that it didn't show up on the MRI.

I was really hoping to keep him off of Prednisone but I'm afraid we may need to go that way. He is really against the liquid diet. He's so sick of drinking Boost and only likes the strawberry. His doc wants him to drink 6 a day (he currently gets about 2 down a day). There is no way I'll get him to do that but I'm hoping to switch it up with Carnation and smoothies with powdered protein mix. His doctor said he can eat as well. I wish we had the fecal cal done before he started treatment so that we knew what his baseline was before meds. I really appreciate all the support. I have to say that reading what others have gone through is both a blessing and a curse. I'm glad to know I'm not alone and I'm scared that we are in for a long fight. I wish none of us had to join this 'club' and put our kids through it all.
01-14-2014, 05:24 AM   #24
DustyKat
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I know it is of no comfort as such but you arenít alone in having normal imaging results when disease activity is present mum. My daughter had a grossly normal CT scan one week before emergency surgery for a perforated bowel. What they found when they went in surely didnít happen in a week! The surgeon really struggled to understand that CT result.

Enterography either by MR or CT is specifically designed to visualise the small bowel and so can be more sensitive to some changes. It doesnít differ from an MRI except for the oral contrast used. It will also visualise the rest as the bowel and abdominal cavity as usual. Might be something to consider as a way of having a clearer picture of what may be going on.

In my thoughts.

Dusty. xxx
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