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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...

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!

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...

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...

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...

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!

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...

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...

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...

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...

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...

It went ok. Doc said the level didn’t need to be checked again for 3-6 months. He said if he did a colonoscopy he’d probably see mild inflammation and it wouldn’t change his treatment. He’s still ok with DS not taking meds for now but wants to make sure he’s seen yearly and does the levels 2-3...

I really wish I could understand his need to NOT be on meds (especially since the Remicade was working). I know part of it is that he knows he’ll have to come off our insurance in a year or two and biologics are VERY expensive. I’ve gone over how insurance works with him and told him about the...

Remicade was working for the most part (there was a time in 2019 when he had to be bumped up to every 4 weeks but he was able to go back to every 8 weeks pretty quickly). The entire reason he went off it is because he doesn’t want to be “abnormal” and doesn’t want to “rely on meds”. I’ve...

Thanks for the info! He was 5mg/kg every 8 weeks on Remicade. I will ask doc about best options but I think it’s clear he needs to be on something. I tried to get him to see a psychologist (even found him one with Crohn’s!) and he absolutely hated it. He says he already feels so abnormal with...

I couldn’t agree more! He should definitely be on biologics but doc just sent me a message that said he can recheck in 3-6 months. DS had a resection in 2021 and wants to be in denial that that surgery fixed everything. He’s autistic (high functioning) so it’s very difficult trying to get...

Hi all! DS (24 years old now!) decided to stop Remicade last November after a great looking colonoscopy. His GI said OK but he has to follow up with fecal calprotectin this year and we just got his level back at 119. He sees his doc in a few weeks I’m just thinking should I prepare him to go...

i can only speak to what our GI’s suggest but I know scope is probably the best way to monitor inflammation. For my kids and husband (and all the other family members of ours that have CD, some on biologics and some on no meds at all) we use calprotectin and labs and maybe an occasional MRE to...

So far it has been paid for but thanks for letting me know! Prometheus Labs (for Monitr and Remicade level) is NEVER covered for us no matter how many times I’ve appealed. I believe they offer one “free” test yearly (where we don’t get billed) and some assistance to make the out-of-pocket cost...

He is on the fence about testing and feels like a calprotectin is “degrading” but has agreed to it (and labs) for now. He’s still living at home and saving up money so I know while he’s here he’ll be staying updated with testing. I don’t know what will happen when he moves out and lives on his...