• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

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  1. imaboveitall

    Update on Violet: RELAPSE

    Hi everyone, After a CLEAR PILLCAM, clear scopes, on Jan 24, V has relapsed. She was on BOTH Remicade and Imuran when this happened. She was six weeks out from her last Remicade (Jan 21) when symptoms returned. She is 4mos post d/c prednisone (d/c Nov) She is steroid dependent. I cannot...
  2. imaboveitall

    Update on Violet, Good News

    Finally got pillcam results at follow up, and they are great! Doc was happily surprised to find that the small bowel was unremarkable throughout, showed healed areas from last year's disaster in there and is overall much improved. Why the areas of disease in the stomach seen at scopes, then? No...
  3. imaboveitall

    Starbright World: site/forum for chronically ill teens

    Hey all, There's an excellent site for kids with ANY chronic illness, ages 13 and over, called Starbright World. Just thought I'd let you guys know. Violet loves it. There are kids on there with all sorts of illnesses and (sadly) plenty with IBD.
  4. imaboveitall

    Looks good Feels good/but disease is progressed!

    V had her scopes today plus cap endo (is still wearing belt, will return at 5pm). Doc right before procedures: "should be pretty quiescent in there". labs done on Jan 21: PERFECT. CRP, neg. Stool inflammation markers, NEG. Hgb, platelets, etc, PERFECT. Scope results: stomach (where she has...
  5. imaboveitall

    For those worried about Remicade/Imuran etc; our success

    Hey all old and new friends. I've been on and off for awhile; am coming on now to share our present success with dual therapy of the scary drugs, for those worried to try it. My old posts about being so afraid of Humira, then Remicade, then dual therapy, so much anxiety as Violet trialed all...
  6. imaboveitall

    Update on V, case in point for silent disease progression

    Hello all. My target audience for this thread is the parents of kids whose docs say they are in remission based upon labs, and those whose docs refuse to scope or do a capsule endoscopy. This disease fairly OFTEN does NOT reflect in labs, and less often but common enough not in clinical...
  7. imaboveitall

    Update on Violet

    Helloooo all! :hug: I haven't read anything here in ages so I'm clueless as to how all are doing. I shall do so after I post. Old Violet continues SYMPTOM FREE after six months on pred. Some will recall her invalid status of last winter/spring. Within six hours of starting pred in April she...
  8. imaboveitall

    Weird Crohn's Part 2 OR NOT?

    It feels wrong when threads I start get over 3 pages so I keep starting new ones as things change...:shifty-t: Now The Saint seems to be coming around to what I've been saying...that V's malaise was not from IBD. The latest LFs being higher and her presentation not aligning is why. V HERSELF...
  9. imaboveitall

    PRED is Our Frienemy

    WOW, today V feels MUCH better, almost normal. Day 3 of a short 6 day pred course. She walked with me a half mile or so; two days ago she could barely walk to the kitchen from her room. She says the "brain fog" has lifted. Here's my new idea: Maintain her on a low dose of pred, start...
  10. imaboveitall

    Who wins the Oddest Crohn's Presentation Award?

    ...it's...VIOLET :award2: Unlike being on the honor roll, this is valued only on certain foums wherefrom others may benefit from her peculiarity. short version per The Guru: Atypical presentation and constellation of symptoms all due to manifestations of active Crohn's. Unequivocally so, no...
  11. imaboveitall

    Weakness ONLY symptom?

    Reposted from Parents forum at one mother's suggestion. Thanks in advance for any replies! hello, sanity savers. Well, as it is DAY 10 post initial Humira and not even a jot of change, not a speck, not an iota, I am again doubting that V's Crohn's is solely responsible for her generalized...
  12. imaboveitall

    Heading Back Down the Differential Dx path

    hello, sanity savers. :heart: Well, as it is DAY 10 post initial Humira and not even a jot of change, not a speck, not an iota, I am again doubting that V's Crohn's is solely responsible for her generalized weakness (her only symptom). To this end, I've made an appt with an...
  13. imaboveitall

    Second guessing Humira/Panicky

    I was up late last night having an almost panicked feeling about V starting Humira. She's had ZERO change since the loading dose Fri. I KNOW it can take awhile. But I expected...something. A small increase in energy, less brain fog...something. Her doc, without saying so, implied as much. He...
  14. imaboveitall

    V.'s Loading Dose Exp

    Violet had her loading dose this a.m. Four syringes. The nurse did the first one in her thigh and she cried with the pain, said it felt like a "knife dipped in acid". Now, this is a kid who passed a kidney stone last week with two ibuprofen. And I cannot recall when last I saw her cry. V. did...
  15. imaboveitall

    Newbie Intro/14y/o daughter w/Crohn's

    Hello all, I've just joined as my 14y/o daughter w/Crohn's is about to start Humira tomorrow. She was dx in Sept 2008 and has been on nighttime formula feeds via NG ever since, (she places the tube each night and removes it upon awaking), which has allowed her 3.5 med free years and normal...