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  1. X

    Intestinal Bechets Gi doc - anyone ?

    I googled and saw Dr. Hamilton inBoston was an author of a review paper on GI Behcets in 2015. Contact info : https://physiciandirectory.brighamandwomens.org/details/90/matthew-hamilton-gastroenterology_hepatology_and_endoscopy-boston-jamaica_plain Paper...
  2. X

    Heard from Doc today

    Hoping no news is good news!
  3. X

    Ketogenic diet??

    My adult son who has Crohns ( in remission on inflectra) has been on a medical ketogenic diet for 8 weeks for another condition. He counts and limits net carbs ( total carbs - fiber) and must eat a lot of fat. Meat is actually limited in his diet and he eats some veggies and berries. We find it...
  4. X

    Heard from Doc today

    When they screened her for clots, do you know if they factored in Rinvoq?
  5. X

    Heard from Doc today

    So happy for you!
  6. X

    Heard from Doc today

    Thanks for all of the clarifications. Glad she saw the vascular MD. Very glad there is no smell now and that the exudate looks better! Re: I think I was too focused on holding her hand or rather breathing through my own pain from her squeezing my hand 😂, You were being a really good mom...
  7. X

    Heard from Doc today

    I think the wait and see if it's an infection and plan to go home with no wound care or doctor set up sounds like wishful thinking. I'd rather be all set up and not need it then have to figure it out if she has an issue. Did the doctor not have an alternative reason for the smell? Nothing...
  8. X

    Heard from Doc today

    Thanks for the update. Sorry the vac changes are so painful. What did the dr think the smell was from if not an infection? (I agree no fever and healing are good signs.) I would definitely want to know the reason for the new smell before going home. How is the doctor determining if she has an...
  9. X

    Heard from Doc today

    Sorry it is so hard and painful and that she has 6 more weeks of this. Especially tough to be stuck there and not really know how much longer. I hope she is able to find some joyful distractions while she continues to recover. May each day be better than the previous one!
  10. X

    Heard from Doc today

    Did she attempt the vac change in the office? Thinking of both of you and hoping things are moving in the right direction.
  11. X

    Can you eat any food once you get in remission?

    My adult son has been in remission on Remicade/ inflectra and can eat most anything. The only foods he avoids are black pepper and very spicy foods. He eats salad and raw and cooked veggies. He just started eating some nuts and sunflower seeds and so far so good. His Crohns was in his small...
  12. X

    Heard from Doc today

    Meanwhile, could she try tums when she gets the pain and see if that helps? In terms of dehydration, is she having ongoing symptoms (dry mouth, lightheaded when she stands, darker and less urine)? Are these symptoms new since this recent surgery or something that she's been dealing with since...
  13. X

    Heard from Doc today

    The surgeon should ask ( and should have asked) a bunch of question about when it began, frequency, location, radiation (= movement of the pain),intensity, quality of pain and what exactly makes it worse or better to better diagnose it.
  14. X

    Heard from Doc today

    Can they do a quick upper endoscopy when she’s in the OR to see if she has an ulcer?
  15. X

    Heard from Doc today

    What? Why would PPI help gas? Drug info says omeprazole commonly causes gas. Also says that about another PPI I looked up. Which drug did her new doctor prescribe? Maybe a newer one doesn't do that. When I think gas, I think simethicone (Gas-X). I think it's benign so maybe worth a try if...
  16. X

    Heard from Doc today

    Do you know and if so, can you possibly explain where exactly the wound vacuum is being placed and what that entails? Is there any judgement or expertise needed to do this? Having a local surgeon taking care of her seems essential.
  17. X

    Heard from Doc today

    We need a way of giving a hug and a like at the same time! Glad things are improving inside and oh no! to the black outs. Is she dehydrated? Does she have a large ileostomy output?Heart rate? Bp? BUN/Cr? Or is it anemia?
  18. X

    Heard from Doc today

    🚿 🌛 before 🛏?
  19. X

    Heard from Doc today

    it would be good to know what her normally hydrated hemoglobin is. Does she need a transfusion? Did she have a medical consult when she was dizzy? If it happens again ( hopefully not), pls ask for that . Vertigo is one type of dizziness. The differential is different depending on the type of...
  20. X

    Heard from Doc today

    Sounds to me like the medical team discharged her prematurely. You are not at fault AT ALL. What is her nutrition plan to help her gain weight back do she can recover fully? Malnutrition inhibits wound healing. She will have more NPO times etc. Seems like she will need some supplements...
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