Calprotectin elevated again

[kernelmom3]

Hi all, we just got DS latest fecal calprotectin back and it went from 119 (last November) up to 200. He had his resection in 2021 and stopped his Remicade at that point. I left a message for his GI to see what to do next (I’m sure he’ll want to do a scope and DS will NOT want to do that).

The tricky thing is, he’s 24 years old now and I’m trying so hard to get him involved with making good decisions about his health and he pretty much refuses to acknowledge/participate. At what point do I let him “learn his lesson” when the lesson could be a very scary one? He’s on the spectrum but high functioning so it’s hard to get through to him because his thinking is very rigid.

I’m sure the GI will walk me through numbers but I don’t know too much about calprotectin so I thought I’d jump in here and see what others have experienced with levels. I also wanted to check in and see if anyone else has young adult kids and is transitioning to try to take more of a back seat to encourage them to step up. It’s so tough to let go when he’s not taking things seriously!

 

[asadmom]

I just want to quickly chime in here. 200 is an increase from 119 but it is not a trigger for a scope. If you want to use a hard number, calpro 250 is the cut-off that I hear the most. Anything below 250, in my personal experience with many doctors, they don't think too much of it let alone making a drastic change in treatments or ordering a scope.

Trending is helpful in this case. You can do another calpro in a few months to see.

No, we don't let anyone (esp. one on the spectrum) meet Mr. Crohn's the easy or the hard way. We go above and beyond to protect the patient's physical and mental health by suppressing Crohn's without creating too much tension in the relationship. I understand the frustration of nudging a stubborn person who is so unwilling. Sometimes it just takes a long time for the patient to come around. I also had to wait for my son to mature up to be able to listen to 1% of what we are saying. He did an internship at a Crohn's research lab and that helped the "maturing" quite a bit because no one was mincing words in the lab and he's surrounded by mice that all had Crohn's.

Remicade is IV and no one likes it. There are other biologics available that don't use infusion.

 

[kernelmom3]

I just want to quickly chime in here. 200 is an increase from 119 but it is not a trigger for a scope. If you want to use a hard number, calpro 250 is the cut-off that I hear the most. Anything below 250, in my personal experience with many doctors, they don't think too much of it let alone making a drastic change in treatments or ordering a scope.

Trending is helpful in this case. You can do another calpro in a few months to see.

No, we don't let anyone (esp. one on the spectrum) meet Mr. Crohn's the easy or the hard way. We go above and beyond to protect the patient's physical and mental health by suppressing Crohn's without creating too much tension in the relationship. I understand the frustration of nudging a stubborn person who is so unwilling. Sometimes it just takes a long time for the patient to come around. I also had to wait for my son to mature up to be able to listen to 1% of what we are saying. He did an internship at a Crohn's research lab and that helped the "maturing" quite a bit because no one was mincing words in the lab and he's surrounded by mice that all had Crohn's.

Remicade is IV and no one likes it. There are other biologics available that don't use infusion.

Thank you so much for this! I could have sworn I heard 250 somewhere too. I’m embarrassed that I have to call the GI and be the go between at his age but I just feel like I can’t step back quite yet especially because he stopped biologics. DD is still on Remicade (this year is year 9) and DH is on Stelara after “failing” on immunomodulators.

I am anxious to hear what the GI has to say but even more anxious about how DS will react. He has already said that when he goes on his own insurance and moves out he will not be getting labs and tests or seeing doctors anymore!

 

[asadmom]

No problem! I wanted to quickly reply because I didn't want you to think that 200 is some sort of point of no return. My son also was not on any medication for a while and we did calpro every month to monitor.

I can totally feel his resentment - this disease is like an invisible weightless ghost that fell in love with your family. Can't get rid of it, can't see it but you feel its presence. Your poor son has had enough of being "handled". He just wants to be left alone. I hope he is stable enough so that he doesn't have to use any drug for a long while.

 

[kernelmom3]

No problem! I wanted to quickly reply because I didn't want you to think that 200 is some sort of point of no return. My son also was not on any medication for a while and we did calpro every month to monitor.

I can totally feel his resentment - this disease is like an invisible weightless ghost that fell in love with your family. Can't get rid of it, can't see it but you feel its presence. Your poor son has had enough of being "handled". He just wants to be left alone. I hope he is stable enough so that he doesn't have to use any drug for a long while.

It’s EXACTLY like that! My sister was diagnosed in her 20’s and we knew my father-in-law had it so when DS was diagnosed it was like a bad dream. Then a year later DD being diagnosed felt like another nightmare and then 2 years after THAT DH finds out he has it too. We CANNOT get away from it! It’s a lot of watching and waiting and hoping nothing happens…and that’s a hard way to live (especially when you’re neurodivergent). Thanks again for your replies!

 

[my little penguin]

Second the 200 isn’t good but not huge flare
Depends on disease location
Lower numbers aren’t as good of disease is in TI
Higher numbers are needed for flare in the colon.
One older “kid” (non ibd ) -young adult here
Where I handle more medical(auto immune stuff ) than I should
Things that have worked for that one
He picks the doc and location he likes
If doc suggests minor meds then we go that route .
But we outline what future steps may happen
If A then options are B or C
Doing nothing will lead to D
Then once D happens you might still end up with B or C
Etc…
No sugar coating it

I wouldn’t expect the GI to do much at all for a 200 other than watch

hugs it’s hard with adults

 

[asadmom]

It’s EXACTLY like that! My sister was diagnosed in her 20’s and we knew my father-in-law had it so when DS was diagnosed it was like a bad dream. Then a year later DD being diagnosed felt like another nightmare and then 2 years after THAT DH finds out he has it too. We CANNOT get away from it! It’s a lot of watching and waiting and hoping nothing happens…and that’s a hard way to live (especially when you’re neurodivergent). Thanks again for your replies!

How many people have Crohn's in your family??

 

[kernelmom3]

Second the 200 isn’t good but not huge flare
Depends on disease location
Lower numbers aren’t as good of disease is in TI
Higher numbers are needed for flare in the colon.
One older “kid” (non ibd ) -young adult here
Where I handle more medical(auto immune stuff ) than I should
Things that have worked for that one
He picks the doc and location he likes
If doc suggests minor meds then we go that route .
But we outline what future steps may happen
If A then options are B or C
Doing nothing will lead to D
Then once D happens you might still end up with B or C
Etc…
No sugar coating it

I wouldn’t expect the GI to do much at all for a 200 other than watch

hugs it’s hard with adults

Second the 200 isn’t good but not huge flare
Depends on disease location
Lower numbers aren’t as good of disease is in TI
Higher numbers are needed for flare in the colon.
One older “kid” (non ibd ) -young adult here
Where I handle more medical(auto immune stuff ) than I should
Things that have worked for that one
He picks the doc and location he likes
If doc suggests minor meds then we go that route .
But we outline what future steps may happen
If A then options are B or C
Doing nothing will lead to D
Then once D happens you might still end up with B or C
Etc…
No sugar coating it

I wouldn’t expect the GI to do much at all for a 200 other than watch

hugs it’s hard with adults

Thanks for the info! His Crohn’s was always in his terminal ileum which was where they did the resection. Doc was very hopeful that since his flares were always in that one location that he’d do alright if he went off the Remicade. DS goes on and on about “big pharma” and how expensive biologics are. It’s almost as if…if he gets mad about the cost he doesn’t have to get scared about the disease (if that makes sense).
He also sees that my sister had a resection in her 20’s (like him) and is in her 50’s now and isn’t on any meds and hasn’t had any further surgeries. We’ve all tried explaining to him that Crohn’s is different for everyone and I KNOW he gets it but he just hates thinking about it. I think I’m just going to have to deal with being embarrassed and help him as long as he’ll let me.

 

[kernelmom3]

How many people have Crohn's in your family??

Ugh lots!

My sister, father-in-law (who recently passed away from complications with Rinvoq), two of my kids, and my husband all have Crohn’s (I also have a close cousin that has it and my grandfather had colitis). I feel like we stand out but no doctor has ever even blinked when I tell them the family history!

 

[kiny]

He also sees that my sister had a resection in her 20’s (like him) and is in her 50’s now and isn’t on any meds and hasn’t had any further surgeries. We’ve all tried explaining to him that Crohn’s is different for everyone and I KNOW he gets it but he just hates thinking about it.

In the 1980s, Belgian GI and surgeon Rutgeerts said it aptly: "To cut is not to cure", meaning a surgical intervention generally does not keep the disease at bay.

The Crohn's "Rutgeerts score", which is still used today, is named after him, which predicts crohn's recurrence in patients. If you ever want data on the recurrence rate in people who had a surgical intervention, search by his name and you will find a lot of data. Very important person in crohn's disease research, who did a lot of studies on all sorts of questions related to crohn's disease.

 

[kernelmom3]

In the 1980s, Belgian GI and surgeon Rutgeerts said it aptly: "To cut is not to cure", meaning a surgical intervention generally does not keep the disease at bay.

The Crohn's "Rutgeerts score", which is still used today, is named after him, which predicts crohn's recurrence in patients. If you ever want data on the recurrence rate in people who had a surgical intervention, search by his name and you will find a lot of data. Very important person in crohn's disease research, who did a lot of studies on all sorts of questions related to crohn's disease.

This is so interesting thank you! His doctor mentioned this but I didn’t get the name. I know my sister is very lucky that she’s had no recurrences or major flares and we tell him that all the time. Maybe now that I have the name I can have HIM look it up!

 

[Pangolin]

Assuming he's on no treatment at all right now after the resection, he should start thinking about trying some things considering his persistently elevated fecal calprotectin. He doesn't want to let that go too long because it would result in further damage to the intestine.

Maybe he'd like to start with some dietary changes? EEN is a possibility. He could maybe even try CDED.

I know the biologics are expensive and a big deal, but I can't think of any medication options that are less prone to side effects than Entyvio, Stelara, or Skyrizi. Safety and efficacy are pretty good with Stelara and Skyrizi.

Does he have other ideas, or does he think he doesn't need to do anything?

 

[kernelmom3]

Assuming he's on no treatment at all right now after the resection, he should start thinking about trying some things considering his persistently elevated fecal calprotectin. He doesn't want to let that go too long because it would result in further damage to the intestine.

Maybe he'd like to start with some dietary changes? EEN is a possibility. He could maybe even try CDED.

I know the biologics are expensive and a big deal, but I can't think of any medication options that are less prone to side effects than Entyvio, Stelara, or Skyrizi. Safety and efficacy are pretty good with Stelara and Skyrizi.

Does he have other ideas, or does he think he doesn't need to do anything?

Unfortunately he prefers to live in total denial and doesn’t want to take ANY medications or do ANY tests. He told me this last time that stool samples are “degrading” and he’s only doing the labs and tests and seeing the GI (only once a year I might add) for me so that I feel better. I’m reinforcing how small a time investment it is to keep the disease managed and he just won’t hear it. At some point I will have to give in and let him manage his healthcare totally by himself, and that’s a scary thought.

 

[my little penguin]

Does he see a therapist for his spectrum disorder ?
Maybe they could provide tools to help guide him.
Having it come from someone other than “mom” on goals consequences etc … sometimes can help .

 

[kernelmom3]

Does he see a therapist for his spectrum disorder ?
Maybe they could provide tools to help guide him.
Having it come from someone other than “mom” on goals consequences etc … sometimes can help .

He actually was in therapy when he was younger. He did occupational therapy at school and saw a psychologist once a week outside of school. He said it made him feel different and he didn’t like it and when he got into his teens, we stopped making him go. A few years after he was diagnosed, we realized what a toll it took on him and we found him a therapist that also has IBD. She was NOT the right therapist for a person on the spectrum and the one chance we had to show him therapy was valuable vanished. Now he just flat out refuses. I’ve tried to sell it to him as family therapy, life coaching, you name it…it’s a firm NO.

 

[kernelmom3]

I just got a call from the doctor’s office and they scheduled an ultrasound for the beginning of June. They said he’d like to start there (they’re just getting this machine in today) because it’s less invasive than an MRE or scope. I’ve never heard of an ultrasound that’s able to see flares/inflammation!? I tried to ask as many questions as I could but since they’re just getting the machine today the nurse didn’t know much. Anyone ever had one?

 

[my little penguin]

My kiddo is allergic/anaphylaxis to the contrast in MRE and CTE so he has had an ultrasound instead .
It needs to be done by someone who is specifically trained for crohns ultrasounds per our last GI not just a general ultrasound tech
Contrast makes it much more useful.
They have used ultrasounds in other countries for crohns for years (Australia comes to mind )
So definitely worth it
Easy to do
Then if they need a more detailed look an MRE could be done

 

[kernelmom3]

My kiddo is allergic/anaphylaxis to the contrast in MRE and CTE so he has had an ultrasound instead .
It needs to be done by someone who is specifically trained for crohns ultrasounds per our last GI not just a general ultrasound tech
Contrast makes it much more useful.
They have used ultrasounds in other countries for crohns for years (Australia comes to mind )
So definitely worth it
Easy to do
Then if they need a more detailed look an MRE could be done

Thanks for the info, I’d never heard of it until today! The nurse said the doc is trained on it and he is in the board of CCFA so I will be interested to see what this all looks like. Fingers crossed!

 

[Maya142]

I’m glad they’re doing an ultrasound. I posted about my daughter’s friend recently. She was diagnosed at 18, put on 6MP but stopped that after college. Then she refused to be on meds for a while - my daughter begged her to see an another GI and get a second opinion, and I talked to her too. But she just wasn’t having it. Her GI a wanted her on at least 6MP but she would not take it and she wouldn’t even consider biologics. So she stayed off meds with simmering inflammation for a couple years. Her fecal cal was never terribly high - always between 150-300.

Then she finally when she was older, she went to a new GI and was put on Stelara. By the her inflammation had worsened. She tried and failed several diets with Stelara - CDED, IBD AID and added MTX. She still had persistent inflammation in her ileum - her proximal ileum and her TI. She developed a stricture in her distal jejunum/proximal ileum with evidence of scar tissue. They tried Humira and MTX and it has just gotten worse and now her MRE shows that she’s in danger of an obstruction. She was just hospitalized for a partial obstruction and has surgery scheduled in May. She is absolutely terrified and really mad at herself for not listening when she was told she needed biologics. Her fecal cal is still not very high since it’s small bowel disease - it’s actually been between 150-200 like your son’s on Humira. But besides the stricture in her jejunum/proximal ileum, she has both acute and chronic inflammation in her terminal ileum with mild narrowing that has not gotten better yet on Humira, based on her MRE. She is very afraid another serious stricture will form and she will need a second surgery.

For right now, she is focusing on the first surgery and once that’s done, her GI will decide on meds and whether they need to change. Her GI had wanted her on Remicade - she felt it would be more effective than Humira - but my daughter’s friend absolutely refused because she said infusions are inconvenient. Now of course she is regretting that and will try whatever her GI suggests to avoid another surgery. She is so scared of her upcoming surgery, poor kid.

I know young adults are difficult. I do suggest staying involved and if possible, making sure he sees a therapist. It’s hard to have a chronic disease when you’re young. And it’s easy to be in denial - this kiddo says she was. The thing is, it’s pretty well known that young adults’ brains are not fully developed till they are 25-26. But they get to start making decisions at 18. So I think a therapist and a doctor who lays out the consequences of no treatment clearly are both essential. Not to scare your son, but just to remind him of the reality. Because even mild inflammation over time can cause damage. And honestly, I think it’s better for a parent to be involved in helping young adults make good decisions, even if they’re 22 or 24. Everyone matures at their own rate and everyone needs help making good decisions sometimes.

And for some young adults, particularly neurodivergent ones, perhaps infusions aren’t the best treatment. Perhaps he’d be more accepting of a shot that he can do at home in 10 seconds. Both my daughters prefer shots to infusions, though they both do infusions if that’s what their doctor has prescribed. But they do say shots are just much more convenient.

The bottom line is that I think it’s really important that someone is able to get through to him that this is a life long disease and it’s important to not let it get out of control.

 

[kernelmom3]

I’m glad they’re doing an ultrasound. I posted about my daughter’s friend recently. She was diagnosed at 18, put on 6MP but stopped that after college. Then she refused to be on meds for a while - my daughter begged her to see an another GI and get a second opinion, and I talked to her too. But she just wasn’t having it. Her GI a wanted her on at least 6MP but she would not take it and she wouldn’t even consider biologics. So she stayed off meds with simmering inflammation for a couple years. Her fecal cal was never terribly high - always between 150-300.

Then she finally when she was older, she went to a new GI and was put on Stelara. By the her inflammation had worsened. She tried and failed several diets with Stelara - CDED, IBD AID and added MTX. She still had persistent inflammation in her ileum - her proximal ileum and her TI. She developed a stricture in her distal jejunum/proximal ileum with evidence of scar tissue. They tried Humira and MTX and it has just gotten worse and now her MRE shows that she’s in danger of an obstruction. She was just hospitalized for a partial obstruction and has surgery scheduled in May. She is absolutely terrified and really mad at herself for not listening when she was told she needed biologics. Her fecal cal is still not very high since it’s small bowel disease - it’s actually been between 150-200 like your son’s on Humira. But besides the stricture in her jejunum/proximal ileum, she has both acute and chronic inflammation in her terminal ileum with mild narrowing that has not gotten better yet on Humira, based on her MRE. She is very afraid another serious stricture will form and she will need a second surgery.

For right now, she is focusing on the first surgery and once that’s done, her GI will decide on meds and whether they need to change. Her GI had wanted her on Remicade - she felt it would be more effective than Humira - but my daughter’s friend absolutely refused because she said infusions are inconvenient. Now of course she is regretting that and will try whatever her GI suggests to avoid another surgery. She is so scared of her upcoming surgery, poor kid.

I know young adults are difficult. I do suggest staying involved and if possible, making sure he sees a therapist. It’s hard to have a chronic disease when you’re young. And it’s easy to be in denial - this kiddo says she was. The thing is, it’s pretty well known that young adults’ brains are not fully developed till they are 25-26. But they get to start making decisions at 18. So I think a therapist and a doctor who lays out the consequences of no treatment clearly are both essential. Not to scare your son, but just to remind him of the reality. Because even mild inflammation over time can cause damage. And honestly, I think it’s better for a parent to be involved in helping young adults make good decisions, even if they’re 22 or 24. Everyone matures at their own rate and everyone needs help making good decisions sometimes.

And for some young adults, particularly neurodivergent ones, perhaps infusions aren’t the best treatment. Perhaps he’d be more accepting of a shot that he can do at home in 10 seconds. Both my daughters prefer shots to infusions, though they both do infusions if that’s what their doctor has prescribed. But they do say shots are just much more convenient.

The bottom line is that I think it’s really important that someone is able to get through to him that this is a life long disease and it’s important to not let it get out of control.

I always worry about what’s going on in there now that he’s totally off meds. His GI has told him several times that you can feel totally fine and there’s a raging fire going on and you won’t know until it’s hospital time. I think there’s a healthy dose of fear in his everyday life but it just doesn’t translate to taking care of himself. I’m going to tell him about the appointment when he gets home from work and I KNOW it’s going to be an argument about missing work and wasted time but it all just boils down to him being scared. I am too. It’s just upsetting to me that no amount of logic will make him start meds again, I hope that changes.