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  1. Pilgrim

    "Oh...so that's where you ended up." My intro to duodenal Crohn's

    So we got H's biopsy report and now the Crohn's has ended up in the duodenum. New to us. Her TI is healed and the colon and stomach look good this time (colon shows chronic but not active disease). There is shortening of the villi in the duodenum, and inflammation but not ulcers. She has been...
  2. Pilgrim

    Heard from Doc today

    I think so too. A GI can rationalize away a calpro, but less so crp in our experience. Increasing steroids may be necassary but it is a big ol' bandaid.
  3. Pilgrim

    Sibling being evaluated

    226 is pretty great! But I know that can vary from kid to kid. A good drop in calpro is worth celebrating.
  4. Pilgrim

    Heard from Doc today

    The thought of her travelling plus dropping steroid levels sounds very risky. She is in a very fragile state. Praying that being with friends gives a psychological boost to counteract the physical stressors.
  5. Pilgrim

    Heard from Doc today

    Heartbreaking response from the Fellow. Hugs.
  6. Pilgrim

    Heard from Doc today

    I would feel the same about fudging. There is too much on the line if it all goes more south (to Antarctica? How far south are you at this point 30 days in???) Who could live with colectomy guilt if a personal medical decision is the last thing tried? CDED is normally a good diet and if you get...
  7. Pilgrim

    Heard from Doc today

    Quietly following. The discharge plan didn't seem great. But now it's a not-discharge plan. I feel like this whole eating thing is wrong. Give the gut a real break.
  8. Pilgrim

    Question about arthritis and Crohn's

    CIC can read me research articles in the sandbox while 1 glass of wine puts me to sleep. I will gladly forfeit the rest of the bottle(s).
  9. Pilgrim

    Heard from Doc today

    How can she even get out of bed? O is incredible.
  10. Pilgrim

    Question about arthritis and Crohn's

    Waiting on scope date. You have been reading the same research articles as my GI. He mentioned the possibility of fluctuations. Mentioned timing of sample (as in time of day). It should be from the first bm of the day. In H's case there is rarely ever more than one per dsy so I don't think...
  11. Pilgrim

    Heard from Doc today

    It's probably wise to work up to taking it day by day (after you work up to hour by hour!) Will they be doing labs during infusion? So relieved that you get a tiny bit of breathing room!
  12. Pilgrim

    Question about arthritis and Crohn's

    Sometimes constipation elevates it? Or he appeals to my need for denial? Ok. I am certain you are right. But I am holding onto that 75 in April. It was so amazingly low! How could it just fall apart? We didn't get even a whole month to hope! She also has no pain, eating everything.... Could...
  13. Pilgrim

    Question about arthritis and Crohn's

    Not yet. We had that appointment last weekend which rolled into our GI appointment this week with lots of travel and then 500 million other things. But it is on my list! Maya142 Thank you for your experience with hypermobile joints! Gives me a frame of reference! As for GI. Her fcal from May was...
  14. Pilgrim

    Heard from Doc today

    Praying. I'm also worried about you taking her home.
  15. Pilgrim

    Question about arthritis and Crohn's

    H has had chronic swelling in her ankle, mostly left but sometimes she complains about the right one also. For years it was just pain but in the past few months there is fluid. So she has xray next week and then GP will send info to GI. Meanwhile GI called to set up a conference on Friday. Her...
  16. Pilgrim

    Shingles

    Little H developed shingles. We ended up at children's hospital to see the infectious disease specialist. It devoloped in an odd way, working up her body as well as around one side. We had to drop her Humira and Mtx this week at least. Hopefully, it won't cause a problem with her response. She...
  17. Pilgrim

    Little Pilgrim's First Overnighter

    H and I are in hospital tonight. She has what seems like a virus and just can't keep food in her. She had her consult today, so she is staying in pediatric hospital at least tonight. She has lost 5 lbs in the past week. Her vomiting is worse in the morning when she wakes up. She was vomiting...
  18. Pilgrim

    Pediatric Pain Clinic

    C has been on 40mg of Pred for over 2 weeks and his pain has not changed. Possibly, it's worse. Labs are fine, small bowel is great, scope showed relatively small ulcers in TI, right side colon. There is no pain clinic for us to go to, and I am not getting help from GI team. We are seeing a...
  19. Pilgrim

    Skin smells

    My daughter developed a poop smell on the top of her head. At first, about a week ago, I thought she may have gotten some on her hands and into her hair (although she is typically very clean). But after several showers, the smell persists. I think it might be coming through her pores or hair...
  20. Pilgrim

    Anxiety, Crohn's, and our Children

    If anyone can help, my undiagnosed son is suffering from anxiety. I am wondering if any of your children have suffered with this prior to or after diagnosis. How did you deal with it. It is very tough. He is in chronic pain, but not really having bathroom issues. Thanks.
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