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Is fecal calprotectin level getting higher for kids having peri-anal fistula

Hi parents,

I would like to get your opinions on this topic.

My son was diagnosed Crohn's in 2016 when he was 15. He has developed a peri-anal fistula. His GI has suggested remicade at the time and we have refused taking this strong medicine. Instead, we were trying diet and he was taking probiotics regularly as an alternative.

In the past two years, he seemed in remission until he was in flare three months ago. He was very sick for a week and he went okay again.

We have been consistently getting Fecal test every three months to monitor his inflammation level. He was around 50 at the beginning of the remission and he went 1000 at his flare three months ago. And then his FC level went down to 300 for the past three months without any symptoms, which is kind of high compare to normal FC level. I was so worried because we have no medicine to take (this is our own choice, can't blame anyone else). Knowing that he has inflammation somewhere but I am still hoping that miracle can happen and his condition is not so serious.

His fistula has never healed and keep draining puss. I guess that some degree of inflammation has been developed there too. He is a stubborn kid and he refuse to take antibitotics.

The question / theory / hypothesis I would like to raise is this:

1. FC results could get higher for kids with Perianal fistula.

2. Kids in remission can still get high level FC assuming that fistual puss gets collected in the sample.

3. Kids with perianal fistula might not have high inflammation in their bowel even FC is high, because the inflammation tested out might be from the fistula puss.

I know these theories might sound dumb but as a parent, this is only thing I am hoping for my son. Crohn's is a mysterious disease and as a parent, the only thing I can do is taking a wild guess.

Thanks for reading my post and hope not waste your time.

Shawn's dad.
 

crohnsinct

Well-known member
You don't sound dumb at all. You sound like a loving parent trying to spare your child the ugliness of this disease.

I will address your concerns as presented:

1 - Yes, FC results would raise with a perianal fistula but not because of the fistula per se but more because unchecked inflammation caused the fistula in the first place.
2 & 3 - If your child has a fistula then they are not in remission. Further, puss from a fistula does not cause a raise in cal pro. Cal protectin is measurement of neutrophils shed in the stool. Elevated faecal calprotectin indicates the migration of neutrophils to the intestinal mucosa, which occurs during intestinal inflammation. It would not be present in puss.

I don't have experience with fistula management but I do know that they are nasty little things and your best shot at control is with the biologics.

No question ever wastes our time. We are all here to support one another and learn from all questions posted here. We were all newbies at one point or another and at moments notice can find ourselves in uncharted territory.

I hope you are able to get that fistula under control quickly!
 

my little penguin

Moderator
Staff member
So questions
Is your child still under a GI care ?
When was his last scope /imaging bloodwork?
Not surprised that the fistula didn’t heal without meds

Fistula puts your kiddo at a much higher level of disease
And a much higher level of complicatations

Fecal cal is only one marker

I understand you as a parent didn’t like the risks of biologics
But did the GI explain the risks of untreated Crohns
Disease

Google images of Crohns colons that are removed
It’s an evil disease that hides on the inside
In your child case that is still seen on the outside
Remicade was recommended because it has a high rate of success at healing fistulas and preventing the complications that come with them

I am sorry your child is still experiencing this
I hope a GI can see him quickly/evaluate scope/image
So you have a true idea of what damage /inflammation your dealing with


Realize we didn’t jump at the idea of biologics
Infact 8 years ago we wanted only een (formula only as treatment )
Then reality set in
And we started slow before moving up the drug chain

But Ds has very mild Crohns and onlyadded biologics to fix his EIM’s vasculitis /Arthritis etc..
 
Thanks so much for taking your precious time to read my post and your quick replies, crohnsinct and my little penguin!

He took blood work every 2 months and everything is normal.

Yes we have been seeing the GI every 6 months. He kept asking us to consider remicade but we can't convince ourselves to take it. My wife and son they both hate needles and side effects of biologics. But with your recommendation, we will have family discussion about this option. We also will be seeing GI in two weeks.

He will be in university next year and I guess every decision will be made by himself and he also will be taking care of his own health as well.

Mixed feeling right and worried.
 

my little penguin

Moderator
Staff member
Please understand the “side effects” are POTENTIAL side effects
Given his age
You probably took other risks for quality of life without a second thought
Because no doc pointed it out

In the US the risk of death for kids under 14
Is
1 in 250 by car
1 in 1000 by drowning

My kids have done both daily but I don’t “think “ about them
Other than following safety rules

Infant Tylenol or Tylenol in general can cause
Steven Johnson Syndrome/liver failure or death
Same with any antibiotics including amoxicillin
That all little kids take

Realize the risk of T cell lymphoma
Is 2 in 10000 for any person in the street without meds OR IBD

With Biologics PLUS IMMUNOSUPPRESSANTS
It becomes 6 in 10000

Remicade by itself does not share the same risks

Biologics are drug most parents here
Stress about massively

But once they see the magic of them working
The hope that med never stops working since you don’t realize how sick your kiddo really is
Until you see them well

The right biologic healed my son’s gut so well for years the docs started to question the Crohns dx since they were used to seeing bits of inflammation
We had to switch biologics (humira to Stelara)
And rescoped during that switch
Sure enough evidence of the evil Crohns was found again

Definitely scope /do imaging prior to starting
Since what was present a few years ago may have changed by now

You need an accurate picture for later to determine if the drugs worked for your kiddo
Since the disease picks which meds are effective
And not the parent
Also everyone is different
 

my little penguin

Moderator
Staff member
Did want to add my kiddo was only 7 at dx
And ripe old age of 8 when he started biologics
He was my “healthy “ kiddo during school years
My non ibd kiddo is always getting a cold etc

Not my on biologics plus immunosuppressants kiddo
No issues
He actually wants the meds and will ask for his shot since he knows what it does
And how good he feels after getting it

He is close to 15 now
 

Maya142

Moderator
Staff member
I would urge you to get him treated - with medication. We have ALL been in your shoes - wanted to treat without medication. But in the years I have been on this forum, I can count only one or two kids (in the last 5 years) who have been able to manage with diet.

And I don't think either of those kids had fistulae, which pretty much automatically mean severe inflammation.

We agonized and agonized before putting my daughter on biologics. Spent many sleepless nights thinking about it.

Finally, she was so miserable - not sleeping, missing a lot of school, in a LOT of pain - that we realized that the medication was a lot scarier than the disease. With medication, you only have to deal with potential side effects. And those are rare - especially the serious ones, which are VERY rare.

With the disease, if inflammation is left unchecked, you will have to deal with complications - strictures, fistulae, abscesses, perforations and even sepsis or death. With uncontrolled disease, complications are COMMON. Surgery is VERY common - I believe the rate used to be about 75-80% of IBD patients had surgery within 5 years. Now that % is lower, thanks to biologics, if they are used early enough in the disease (i.e. before damage to the intestine occurs).

Your child already has pretty severe disease. I would want to treat aggressively - make sure he goes into remission and stays there.

My daughter has severe inflammatory arthritis, which we under-treated for just about a year. She developed joint damage and will be in pain for the rest of her life. Her arthritis also became so aggressive that she will never be in remission. We have tried absolutely everything and her arthritis continues to attack her joints, and she has required several surgeries.

I will never forgive myself, as a parent. We should have done more research, sought a second opinion and started treating her more aggressively. Now the damage is done.

But because of our experience, when she was diagnosed with Crohn's, we made sure she was treated aggressively. So her Crohn's has remained mild - no complications or damage to her intestines. She is doing very well. We put her on Remicade + Methotrexate within a month of diagnosis and 8 months later, ALL the ulcers in her colon had healed - in fact, her colon looked "perfect," like she didn't even have IBD!

Both my daughters have been on biologics for years - 8-9 years. They have never had side effects with biologics. They both got through middle, high school and now college on biologics and had no issues with infections. Honestly, biologics have been the easiest medications to tolerate.

In all my years on here, I have never heard of a kiddo having a high Fecal cal just because of having a fistula. I would check with your GI. I would also urge you to do scopes and figure out how he is actually doing, if you do not believe the FCP. My worry is significant inflammation, which will then go on to cause bigger problems. Surgery is a LOT harder to deal with than a needle poke every 6-8 weeks.

I know all this is daunting. But you want to get the disease under control, especially if he will be away at college next year.

And if you need extra reassurance, a second opinion may help.
 
A fecal calprotectin level of 300 with no symptoms would mean that the disease is still active, symptoms don't always match with disease activity level and there can still be a low level of inflammation going on unnoticed.

I agree with all the posts here that having the medication is the best thing to do. No one wants to have this type of medication given the choice, but it is the least worst option. I understand you may be concerned about the side effects, but consider the side effects of untreated Crohn's - they are far worse.
 

Tesscorm

Moderator
Staff member
I'll add my voice to the chorus. I was also very scared to add a biologic to my son's treatment. He was diagnosed at 16 (almost 17) and his treatment was exclusive enteral nutrition (EEN) (nutritional formula only for 6 weeks) and then the formula was continued at half dose until he turned 18 (only medication was Nexium) (supplemental or partial enteral nutrition = EN). The EEN took him into clinical remission (no outward symptoms) but MREs continued to show intestinal inflammation. At 18, he was transferred to an adult GI.

Adult GI felt very strongly that medication was needed. While he showed no outward signs (he looked and felt great!), the inflammation was simmering and it was only a matter of time - unfortunately, no one knows how much time! As my son was 18, his opinion played a large part in the decision (because, as a parent, I was ecstatic with EN only as his treatment!!). My son was about to start university and he did not want complications to begin... he was especially concerned that staying on EN only would begin to cause permanent damage and he would require surgery.

While I hated the thought of biologics, from all the knowledge I'd gained here, I knew they would be a part of his future. Why wait to start them after the damage was done? The GI did another MRE to confirm the earlier results and then he began remicade.

It has now been approx. 5 years; he's since graduated and is working. Unrelated to crohns, he's had two surgeries (shoulder and jaw) and has recovered without issue (neither crohns nor remicade had any impact on recovery). He plays sports, he's traveled with friends, he's been around 'infections' (while in residence, a roommate left school with mono, lots of others had strep, etc) and he has not really been 'much' sicker than usual. (He had a couple of bouts with recurring bronchitis, a skin rash... perhaps his suppressed immune system played a part but, hard to say with certainty as kids not on remicade get sick too.)

Crohns has not had an impact on his life. He has an infusion every six weeks and, so far, that is the only crohns-related intrusion on his life.

But, it's a very hard decision. :( Especially when you don't 'see' the sickness. I would've loved if my son was one of those who can have one flare and then find remission without meds... but those are very rare. :( And the risks of testing that possibility could have been significant.

I think it's important that you include your son in the decision now... as he will be the one living with this illness life long. :ghug:
 

crohnsinct

Well-known member
One of the most promising areas for nutritional approaches is treating CD complications. Levine and colleagues pointed out that EEN has effectively treated inflammatory strictures, intra-abdominal abscess, and enterocutaneous fistulae. "Use of preoperative exclusive enteral nutrition for 4 weeks or more may reduce the need for surgical resections,"
Thought of you when I read this. The full article is was posted today in it's own thread.
 
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