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  1. K

    Calprotectin elevated again

    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...
  2. K

    Calprotectin level after stopping Remicade

    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...
  3. K

    DS going off Remicade

    Hi all, just wanted to vent (and hopefully get some reassurance)! After DS had his resection last July (2021) he stayed on Remicade to get through his senior year of college. He HATES Remicade! He is on the spectrum and has hyper fixated that it will give him cancer (no matter what facts/data...
  4. K

    Remicade trough level

    Hi all, waiting for DD’s scope tomorrow on pins and needles and her Remicade level just came back at 34 with no antibodies. She’s currently 7.5/mg every 8 weeks and the labs were drawn last week so she was about halfway between infusions. Her level has always been between 15-34 but I just now...
  5. K

    Blood in stool

    Hi all, I think I just need some words of wisdom and encouragement to calm me down. DD had blood in her stool a month ago for a few days and it went away. Her labs have been looking great and she has no pain, fever, weight loss, etc. The blood started a few days ago (it has already stopped agan)...
  6. K

    Resection surgery scheduled

    DS (21 years old) scheduled his resection and I have so many thoughts/feelings! DD had hers done 6 years ago so I wanted to get some advice/opinions since it’s been so long. To make a a very long story short, DS was diagnosed 7 years ago and has had several hospitalizations for strictures...
  7. K

    Covid vaccine-high CRP?

    Does anyone know if the Covid vaccine causes elevated CRP levels? DD just had her second dose a few days ago and had labs today and her CRP has spiked to 31! We’re doing a fecal calprotectin test and I have a call into the doctor but just wondering if anyone has experience with this. Thanks in...
  8. K

    Tethered ileum?

    DS just had an MRE yesterday to see if his fistula is gone and he can space his Remicade infusions from every 4 weeks back to every 8 weeks like they had been (he had an abscess and fistula in January and had a drain for two months). The results can’t definitively say it’s gone and showed...
  9. K

    Colonoscopy found stricture

    Hi all, my daughter just had a colonoscopy and she has a stricture where they did her resection 3-1/2 years ago. They took biopsies but doc said it looks like scar tissue. She showed me the pictures and it looks REALLY narrow, she didn’t even want to push the scope through but she was able to...
  10. K

    Out of remission and overwhelmed

    My son (19 yrs old) has been in remission since he started Remicade right after being diagnosed almost 5 years ago. He started college last fall and lives in his dorm (private) about 1 hour away. In late January, he developed a fistula and an abscess. They were able to place a drain in the...
  11. K

    Abscess drain-no output

    Quick backstory for those who haven’t read my previous post-My 19 year old son was diagnosed with Crohn’s almost 5 years ago and has been on 5mg of Remicade every 8 weeks since then with no issues and in remission. He was recently hospitalized for a week because he has an abscess and a fistula...
  12. K

    Remicade not working anymore?

    My 19 year old son was diagnosed with Crohn’s almost 5 years ago and immediately started on Remicade. He’s 5 mg/kg every 8 weeks and it’s been working wonderfully. Last week he called me from college to say he’d been feeling really sick for two days but he thought it was the flu. I took him to...
  13. K

    High SGOT and SGPT

    Hi all, long time no talk. We moved and things have been crazy around here. DD had an MRE a few months ago and that looked great and her labs have been great too (yay!). DS was in the hospital overnight a few months ago with what may have just been a stomach bug (because after he was sick we...
  14. K

    DS back in hospital (ileum thickening/enlarged appendix)

    DS (17yo) woke me up at 2AM asking for Zofran for his vomiting. He threw up twice and seemed to be better after taking the Zofran. Around 5AM I checked on him and he was having body aches and he felt very hot. I gave him some Tylenol and we were off to the ER. They started him on IV fluids and...
  15. K

    Flare treatments?

    After my post last night, DD has had more odd looking (ahem) poop. First bright green, then light green and finally VERY light brown. She came in and admitted to me that she's been in pain for the last 2-3 days so I had GI paged. Right now she's eating normal, no fever and labs at her infusion...
  16. K

    ANOTHER new diagnosis (and a question)

    DD (15yo) has had three kidney stones in the last 6 months (2 of them in November). The last one she had we decided on the surgery and we're glad we did because it was BIG and impacted. All her stones are calcium oxalate so her urologist repeated a 24 hour urine test. He just called back to say...
  17. K

    Stress/anxiety and no sleep

    DS is 17 and was diagnosed with Crohn's a little over two years ago. He's been on Remicade since diagnosis and is responding well (THANK GOD). He is a perfectionist in every sense of the word, talking 5 AP classes this year with no lunch period in high school (NOT my idea). He has finals today...
  18. K

    Surgery today :(

    They admitted DD because her kidney stone is 4mm and that's the cutoff for a stone you can pass on your own. Urologist gave two options:1) go home, wait it out and 50% chance she'll pass it on her own but may keep having terrible pain as it passes or 2) surgery today to go in through her ureter...
  19. K

    Second ER visit in 2 weeks

    DD had her first kidney stone a few months ago in June, the CT they did then showed multiple stones in her right kidney and gallstones too. About two weeks ago she woke up with the same pain and we brought her back to the same ER and they did an ultrasound and an X-ray and said it was likely...
  20. K

    Fecal Calprotectin results

    DD has never had a scope and since it's been about 9 months since her resection her GI wanted to do one. Because DD was perforated during his colonoscopy to diagnosis in 2014 I'm saying no to scopes for right now. We agreed on a fecal calprotectin test. I also had one done for my youngest son...
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