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  1. Maya142

    Case Closed

    Glad you finally found an answer! I'm sorry to hear it is a chronic, difficult to treat illness, but I'm sure the relief of just knowing what it is and having your experiences validated helps some. I know how hard it can be to diagnose endometriosis and I'm so glad they finally found it and...
  2. Maya142

    Heard from Doc today

    Ah, I love "adult kids" (I really wish we still had the emoji that was banging its head against a brick wall repeatedly because that is what I feel like doing!!!) :rolleyes:. Mine wants off steroids ASAP, despite nearly going into an adrenal crisis which caused an admission last week...
  3. Maya142

    Heard from Doc today

    Oh geez! That's not good. Can you find them online? Could you find flushable wipes? Or even baby wipes in each bathroom (and a trash can for them!). Or tissues, I guess. Yikes! Running out of toilet paper truly scares me. I'm glad to hear O feels better hearing that her side effects are...
  4. Maya142

    Heard from Doc today

    M has actually been on cholestyramine (Questran) before - for a clean-out of an arthritis drug that was causing severe side effects. It was a long time ago though - long before she had a tube. She hated it - said it was gross and made her nauseous! That was only for 3 days though. Anyway, now if...
  5. Maya142

    Heard from Doc today

    Bile acid diarrhea...what is that? I ask for your O, but also for my daughter who had an eventful week of non-stop diarrhea and severe abdominal pain and has gallbladder tests scheduled! I'm sorry to hear O had to go home, but I'm so glad she did!! COVID is now so widespread I hear that even...
  6. Maya142

    Heard from Doc today

    I would also guess it's the Entocort. She's been on steroids so much that I would honestly consider seeing an endocrinologist and letting them supervise the taper. Of course, since getting her to even see her GI is so hard, I understand it might be very difficult for a very busy college...
  7. Maya142

    Back to the drawing board

    I would definitely do some small bowel testing, given that her disease was originally diagnosed by pillcam. You can't really know that she doesn't have IBD without looking at her small bowel. I would push for another pillcam and if that is negative, then look at other causes. Visceral...
  8. Maya142

    Silent Crohns

    Poor kiddo. I hope very much they will put her on biologics after the surgery!! Are they expecting her to need an ostomy? How is she coping with all this? I'm sure it must be a huge shock after many years of no symptoms or few symptoms.
  9. Maya142

    Perspective - Covid-19 and our ibd kids

    It is very nice of all of you to care so much about my girl :love:! Luckily, we have found a way for her to get the drug without flying (at least temporarily). We may have to go in a month or two to see that particular researcher in person, but her rheumatologist is also appealing since it is...
  10. Maya142

    Perspective - Covid-19 and our ibd kids

    Wanted to add - my daughter's specialists said the same thing, except they did not gave a % for her risk of complications, just said it was significantly higher. So hearing that it's 10-15% makes me feel better (although I know that depends on the kiddo and meds, but CIC, I will sleep a bit...
  11. Maya142

    Sibling being evaluated

    I agree - the fact that small bowel disease can be silent makes it really scary...I also cannot stop thinking about Catherine's poor girl. Leaving T with simmering inflammation seems a bit nuts when you know the dosing of Remicade that does work for her - 7.5 mg/kg every 7 weeks! I would...
  12. Maya142

    Perspective - Covid-19 and our ibd kids

    My kiddo may be the exception because she is on two biologics and two immunosuppressants (MTX and another one for her arthritis) but her GI and rheumatologist are quite concerned - perhaps because her school is in NYC and because she's on so many immunosuppressants and also has high levels of...
  13. Maya142

    Silent Crohns

    I'm so, so sorry to hear this. I know the system in Australia makes it hard to qualify for biologics and poor Sarah is suffering because of it. It sounds like she should have been put on a biologic years ago. If she has fistulae, my guess is that Remicade will be recommended, but Humira is...
  14. Maya142

    Please help - 4 yr old has fissures

    My kiddo was seen at CHOP but was diagnosed at 16, so was obviously not in the VEO clinic. I honestly think the VEO clinic sounds like the right place to be, given how young he is. IBD in a toddler seems to be different than IBD found in older kids and teens - in my experience (just based on...
  15. Maya142

    Silent Crohns

    My kiddo had an awful time with Imuran - first it wasn't at therapeutic levels so it wasn't doing anything and then we added Allopurinol and that got her to therapeutic levels, but then she got infection after infection. She's not a kid who normally gets sick (one cold a year is her norm) but...
  16. Maya142

    A Crohn's related skin question

    I don't think itchiness is always part of psoriasis - my husband was just diagnosed with psoriasis and he never complained of itching. His is scalp psoriasis but he also has nail psoriasis, which was misdiagnosed as a fungal infection for years. My younger daughter also has nail psoriasis but...
  17. Maya142

    Please help - 4 yr old has fissures

    I'm sorry to hear your GI downplayed the pain of fissures - my daughter actually teared up when I told her about your son and his pain and she is one tough kid - she has severe arthritis in addition to IBD, she's had 8 surgeries, including having joints replaced at 22 (she's a college student...
  18. Maya142

    Silent Crohns

    Wow, poor kiddo. It sounds like she probably needs to put her health first for a little while - I know that is the absolute LAST thing young adults want to do, but if her small bowel looks so bad, she needs to be on a biologic probably. She's been on Imuran for years, right? And it clearly...
  19. Maya142

    100mg imuran for a 13 year old boy. Suggestions please!!

    All meds do come with side effects. However, the side effects of Imuran and the increased cancer risk are the reasons why most pediatric GIs are now trying not to use Imuran or 6MP. Imuran increases the chances of regular Lymphoma, non-melanoma skin cancer and of a very specific type of T-call...
  20. Maya142

    Please help - 4 yr old has fissures

    Any news on the scopes? I hope the prep wasn't too hard on him, poor kiddo.
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