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Crohn's Disease Forum

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  1. lookame

    23andMe IBD study - your help needed!

    I think in my case the suppliments that may be benificial would be b12 or vitamin d, though I don't know if I'm actually deficient in either so it may or may not be worth it. I'll do some digging...
  2. lookame

    23andMe IBD study - your help needed!

    They are the single mutations. I haven't supplimented withings folic acid unless I was pregnant but I think I may start adding in a suppliment. I inputted in promethese.com and it's pretty interesting seeing what I'm at a higher risk for (it also tells you basically what you look like-in my...
  3. lookame

    23andMe IBD study - your help needed!

    So my base genetic whatever came back and I'm confused by it but from what I understand...I have the MTHFR C677T and MTHFR A1298C mutations(in the +/-) and I guess the VDR Bms mutation (+/+)...a lot to do with vitamin b12, folate, and vitamin D...
  4. lookame

    Pregnancy and Remicade

    I was on a double dose Remicade every 7 weeks however 2 infusions in after I found out I was pregnant I became allergic to the treatment (I was on it for 2 yrs, got pregnant and became allergic). I had no other adverse effects with my pregnancy regarding the Remicade. I highly suggest seeing...
  5. lookame

    Avascular necrosis?

    Ok...I just read up on it and it sounds lIke my previous comment was very much incorrect :/
  6. lookame

    Avascular necrosis?

    Pottytime- have you tapered off the steroids or are you still on them (even a small amount)? How are your other symptoms? I'm curious if you stop the steroids and started taking suppliments for joints if it'll slow down the process. I'm not familiar with it though... On the flip side I'm glad...
  7. lookame

    The worst advice

    While pregnant I was seeing maternal fetal medicine for growth ultrasounds to make sure my little girl was lnt suffering from my absorption issues From the ultrasound tech "I have a friend who went completely raw vegan diet and she is cured of her crohns, have you tried that?" From my well...
  8. lookame

    When the meds fail

    I have a consult scheduled on April 7th. I'm on state insurance like medicaid and unfortunately that leaves a narrow window of doctors who accept my insurance. The surgeon I've been referred to only goes over referrals twice a month and is only in office on thurs so it's taking a longer than I...
  9. lookame

    How do you make the decision for surgery?

    I am on the verge of surgery as well. I've been questioning whether it's the right direction or not right now. It's a difficult decision, especially if you consider that you've been worse. Like you I had a recent scope which showed no improvement with the treatment I'm on and I'm also running...
  10. lookame

    Flexible sigmoidoscopy - sedation or no?

    I've had 2 colonoscopy especially with full sedation, a flex seg without sedation and a flex sig turned colonoscopy with full sedation. The first colonoscopy with sedation they had to give me a little more because I woke up in pain, second colonoscopy I don't remember, first few sig without...
  11. lookame

    Mortified at work

    I've been there... There was a time when I wasn't doing so hot but I made a 2 hr trip with some friends and shared a hotel room with them. When we got to the room I went to the bathroom and they commented about the smell. Thankfully my then fiance (now husband) took the fall and said it was...
  12. lookame

    What do you describe as "your new normal"

    I was diagnosed Aug 2010 but had CT scans and a colonoscopy from Aug 2009 until my official diagnosis. The CT scans essentially tracked the disease getting worse (it's a long story). Anyway at my worse I was going several times a day, waking multiple times a night and having lots of cramping...
  13. lookame

    Combating prednisone side effects

    I took the prednisone earlier yesterday(I've been trying to avoid taking it during the day because I'm breastfeeding) anyway after I took it I had eye pain and blurred vision and light sensitivity but I was able to get a decent amount of rest last night. so much better than tossi ng and turning...
  14. lookame

    Thoughts please

    That is strange but it's also good. I think that is the tricky part of the disease...it causes these infections and things when it's active but when it's not in an active state you are fine. The antibiotics have probably helped a lot as well. I hope you are on the mend and the disease isn't...
  15. lookame

    Combating prednisone side effects

    I'm currently on 30 mgs a day, weaned down from 40 mgs. I was suffering from pretty bad blurred vision. Now I'm dealing with insomnia, blurred vision (not as bad) and mood swings. Since weaning down I've seen more blood and mucous and it's pretty painful to have a bm. If I could get some rest...
  16. lookame

    Crohn's - Please help me understand my wife's suffering

    What are her symptoms? Is there blood? Mucous? Does she have pain before/during bowel movements? Is she expiriencing diarrhea? Does she have any deficiencies such as iron deficient, vit d ect? I am on a combination therapy. Usually they start you on a base drug as a maintance drug something...
  17. lookame

    Should I Avoid Sushi?

    I love sushi! I had some last night...I will say though if your intestine are raw/in a flare the harder veggies in the roll may be harder to digest. In that case Philly rolls and Alaskan salmon rolls which don't have the veggies would be better (or rolls with avacado ect)
  18. lookame

    Prometheus Anser IFX Antibody test

    I had the test. I showed I needed to be on a double dose of Remicade. It helped bUT 2 yrs later I became allergic to it...it was kind of a sudden thing and I was recently pregnant so that may have had something to do with it.
  19. lookame

    Crohn's with C-Diff Support Group

    I don't think you always require hospitalization if you have c-diff, only if you require iv fluids. I did a 10 day coarse of Flagyl at home and didn't go to the hospital...though it was pretty painful and I had a fever of 102...probably should have gone to the er...
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