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Recent content by crohnsinct

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    My son was diagnosed SJIA at age 12 then Crohn's at age 13

    Stanford accepts a lot of different insurances and yes they will take out of pocket payments. https://www.stanfordchildrens.org/en/service/inflammatory-bowel-disease Rinvoq has a good success rate in the colon. The loading dose is 45mg for 8 weeks. Your son seems to be severe and refractory...
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    My son was diagnosed SJIA at age 12 then Crohn's at age 13

    My daughters are seen at Stanford. They have a new director there and he is wonderful. Very well known in the field and very on top of the latest research. Where is his disease located? What was his calpro prior to starting Rinvoq? Is he still on loading dose of Rinvoq? What does is he on...
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    Heard from Doc today

    @Maya142 they reported her case to a registry and asked our permission to write a case study on her. I don’t think anyone is ready to say Rinvoq caused the poor wound healing but I also don’t think there are enough people who have been on Rinvoq who have had surgery. She stopped taking it 2...
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    Heard from Doc today

    Yes. That is actually what gave her the .7% chance.
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    Heard from Doc today

    Thanks @crohntje How are you getting on?
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    Heard from Doc today

    Wanted to add that they screened her for risk of blood clots and she came up at a .7% risk. So definitely just a super weird and random thing.
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    Heard from Doc today

    The recovery from total proctocolectomy is not usually like this. It is long and painful but takes a much different course. She has just had a few very rare complications. They usually have you sign off on the known risks such as nicking the urinary tract, sexual dysfunction, infertility...
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    Heard from Doc today

    As luck would have it, the surgeon was finished with his surgeries early today and he called us to come in. The white fluid is very usual and not something to worry about. He said it is tissue sloughing off and a very good thing but acknowledged that it looks like pus and said it alarms...
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    Heard from Doc today

    That’s possible I guess. Or it was due to the fact that we went a full week. Friday would have been the regularly scheduled vac change day. Despite the fact that the vac sucks much of the drainage away a good portion of it gets soaked up in the external dressings so maybe that was it also...
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    Heard from Doc today

    No, I didn't ask him those questions about the wound smell. I think I was too focused on holding her hand or rather breathing through my own pain from her squeezing my hand 😂 . Then I got distracted with learning how to pack the wound etc. Honestly though that smell would knock you out BUT...
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    Heard from Doc today

    P.S. I am still especially suspect of this upper abdo pain. Her GI here said it was o.k. to discontinue the PPI since it wasn't helping at all and said, "just go home and if in a month it is still there then we will pursue imaging". I have read that portal vein thrombosis could cause abdo...
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    Heard from Doc today

    Man @xmdmom you are validating what I thought was my crazy! I thought all the same things…well except the anemia part…good point. No culture planned. I don't think he could do that in office. Definitely no EUA planned. We are doing the next exam in the office before hours even! It is his...
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    Is oatmeal safe with ileostomy?

    Want to add that detailed diet guidelines and how to advance should have been given to you by the surgeon or registered dietician before you left the hospital. If you got it, best to follow their plan but if not, you should definitely call and ask for this. The amount of info my daughter got...
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    Is oatmeal safe with ileostomy?

    When did you get your ileostomy? Is it a new ostomy? In general, they advise low residue GI diet for about 6 weeks after a new ostomy and oatmeal would be a no. But after that initial 6 weeks, assuming all is well with output etc, then you can start trying 1 food at a time. They had my...
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    Heard from Doc today

    O had her one week vac change yesterday and it went o.k.. Hurt a lot but she did it! The only issue is the drainage from the wound was really smelly. Like putrid and disgustingly smelly. It started last Thursday. We emailed the surgeon Friday and never heard back so went about our lives...
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