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  1. C

    Heard from Doc today

    Hey guys! Nothing much to report except O is gaining weight nicely and doing rather well. She is still on the 45mg loading dose of Rinvoq. At 8 weeks (mid July'ish) she will get labs and go down to maintenance dose of 30mg. Her bleeding has pretty much stopped and she is only having to go...
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    [Extremely depressed] Help - is it possible to stop the med & reverse autoimmunity?

    I have always been the diet proponent on the forum. My daughters have been seen by leading functional medicine docs as well as leading pediatrician now adult GI's for 10+ years. I can tell you without a doubt that there is MUCH research in the diet realm. EVERY GI we have seen has used some...
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    Iron question

    Great idea! In addition to the check intestines light installed in their bellies. You are not so far off actually. There is an at home Calpro test and it is pretty accurate. You read it with an app on your phone. It has been available in Europe for a couple years now. Just waiting for the...
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    Skyrizi (anti-IL23 antibody) Approved for Treatment of Crohn's Disease

    Different people have different drivers of disease. For some it is tnf and either suppressing tnf or making it more difficult for the tnf to wreck havoc works. But for some the Il’s or the JAK’s are the culprits to using those selective drugs works better for those people. To complicate...
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    How to ensure uninterrupted Humira during relocation

    We have moved across the country and two of my daughters have gone back across the country for college in two different areas. Both were on infusions or Humira at the time and we had no problems at all. They came home for school breaks and things transitioned back and forth just as easily. We...
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    MRE experience and RESULTS

    I have only seen one person dx'd with pill cam when the scope didn't reveal inflammation and the MRE wasn't a slam dunk BUT they had sky high inflammatory markers, anemia, were rapidly losing weight, in a lot of pain and throwing up regularly. Because they were so symptomatic, the GI decided to...
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    Iron tablet question

    Other than making sure he is eating foods with loads of iron in them you could also try to cook with iron pots and pans. A little iron leaches into the food. This was a suggestion made to me and it helped push one of my daughters back into normal range. My other daughter who has severe...
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    Anastomotic Configuration in Crohn’s Disease Surgery Does Not Influence Stricture Risk

  9. C

    Crazy turn of events for us!

    WONDERFUL NEWS! Also very helpful update for others traveling the same path. Thanks and good luck! I hope we don't have to see you hear again!
  10. C

    Iron question

    Spoons work but not for the fecal occult test if it is the stick kind that you dip and send or the card that you brush onto. LOL bribery works…so does threats…nah kidding…maybe...
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    New to hyrimoz (biosimilar to humira)

    Phew! One less thing to worry about!
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    Are your kids physicaly active?

    My two Crohn's girls are VERY sporty. Super competitive, more than one varsity sport, active is many clubs, one playing NCAA softball. My non Crohn's kid swam on high school team and casually swam on her USA Club swim team but did the minimum required to stay on the team. Dropped all athletic...
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    New to hyrimoz (biosimilar to humira)

    I say this not to panic you but lack of nutrition also adds to the inflammatory cascade. He needs to be well nourished so his body can try to heal. If he is malnourished his body will drop the healing function in order to concentrate on daily operations. It is a vicious circle. Disease makes...
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    New to hyrimoz (biosimilar to humira)

    No, no, no…we are not saying the values are extremely high. They are elevated. But CRP and sed rate are not specific to the GI tract. Anything could be keeping those values raised. Even an injury or slight cold could increase those numbers. Please do not be depressed. The good news is they...
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    New to hyrimoz (biosimilar to humira)

    We freeze cal pro samples. They are stable at room temp for up to 7 days so freezing them gets them through transit to the lab and the days offsetting on the bench. The inflammatory markers are still elevated but good they are going in the right direction. Cautiously optimistic.
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    Chron's and Down Syndrome

    Second the mucus comment above. Could be Crohn's but could also be a dozen other thins and could be nothing. Unfortunately like all things with the digestive system you just have to wait and see and methodically cross things off the list. Same with the smell…it could be nothing or it could...
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    Chron's and Down Syndrome

    Sorry had to laugh at interstate medical traveler. My daughter is seen at Boston, goes to school in southeast but I recently took her to Midwest for her colo rectal surgery. When you have a niche disease you have to travel for the experts. You get used to it. Unfortunately you are juggling...
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    Chron's and Down Syndrome

    My daughter's have been to several IBD specialists and mucus gets barely an eyebrow raise and they have known IBD. Mucus is actually much more of a hallmark symptom of IBS and SIBO. I don't tell you this to poo poo (sun totally intended) your concerns but just to calm your fears a little. I...
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    Heard from Doc today

    Oh wow @Maya142 ! No one told us that! And I can 1000% guarantee that O did NOT read the prescribing information pamphlet that likely came with it. Details! I am super surprised that the Rinvoq ambassador didn't tell us that. She LOVES her job and can talk Rinvoq all day.