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  1. CarolinAlaska

    What do I expect from Humira

    My daughter, now 22, is failing sulfasalazine due to low white count. She has already failed 6MP for same reason 3 years ago. Her rheumatologist wants her to start Humira soon for joint issues. What can we expect as far as side effects? Is it usually well tolerated? Also, does anyone know...
  2. CarolinAlaska

    Back to the drawing board

    We did the scopes and got the biopsies back today. All normal. We are moving on in a nonCrohn's direction trying Linzess to help with visceral hyperalgesia and considering esophageal manometry for food and pill getting caught on their way down.
  3. CarolinAlaska

    Back to the drawing board

    Only the scopes. Originally she was diagnosed from pill cam.
  4. CarolinAlaska

    Back to the drawing board

    After moving to IL and seeing two new sets of eyes and having two sets of scopes that were negative, Jae's GI took her off of her 6MP all together when she was having low white counts from it, then pretty much wrote her off. We ended up eventually seeing a GI motility specialist...
  5. CarolinAlaska

    Looking for a new adult IBD specialist in north central Illinois/eastern Iowa

    My 20 year old has outgrown her pediatric gastroenterologist. We'd like an adult one closer to home. Can anyone recommend one near Peoria, IL, Bettendorf, IA, Sterling, IL? We'd be willing to go back to Iowa City if there is a good recommended one there too.
  6. CarolinAlaska

    CT scan - some thickening of proximal duodenum?

    I'm so sorry to hear this. It sounds very frightening. I'm sorry she had to get so bad before she got someone who sould take her seriously. Jaedyn has a diagnosis of Ehler's Danlos now, but her specialist who knows EDS has moved out of state.
  7. CarolinAlaska

    Low dose naltrexone is working for me.

    How is this going? Are you still doing LDN?
  8. CarolinAlaska

    LDN (convince doctor)

    Sorry I can't help you, because I am at the same place as you. You may want to post on main general thread to see if you can get more visibility. How did your appointment go?
  9. CarolinAlaska

    Low Dose Naltrexone (LDN) Support Group

    Hi. New here to the idea of LDN. I've seen others using it for years, but never took this path. My daughter is 20 now. She has Ehlers Danlos Syndrome, chronic joint pain issues, IBS (was diagnosed with Crohn's in Alaska, but here in IL they discounted that diagnosis and she's not been treated...
  10. CarolinAlaska

    Cleaning my NG tube

    I am wondering if anyone has some good instructions for cleaning Jae's NG tube? She takes it out most mornings and replaces it each evening. She has had it going for 2 weeks now and it is started to get stinky in spite of washing it in warm soapy water and flushing it with clean water. Anyone?
  11. CarolinAlaska

    NG tube and heartburn

    My daughter is on an NG tube again with peptamen 1.5. She is having heartburn that ranitidine is not helping with. Would it be okay to do Maalox or Tums? It is not EEN. She just can't get enough calories to sustain herself without it right now.
  12. CarolinAlaska

    IEP or 504

    Does anyone have a copy of an IEP or 504 plan for school that I can look at?
  13. CarolinAlaska

    Low White Count

    Jae had blood work in the ER last Wednesday and her white count was 1.3. The next day it was 1.7. I think it was suppressed from a virus she had been fighting. She was then in the hospital (not GI related) and it was never checked again. The hospitalist who discharged her said that she...
  14. CarolinAlaska

    Four years today

    Today is the 4 year anniversary of the first pediatric GI visit she had before being diagnosed with Crohn's. It was the first time any doctor suggested Crohn's might be the problem. It was the first time we weren't blown off for her symptoms. She was 13, 5'1" tall and 68 lbs. She could...
  15. CarolinAlaska

    Where we are now and how freaked I am

    Sometimes I am happily spinning my numerous plates on various levels and all of them are doing their thing. Each one represents one of my children's many issues. For Jae, I have many plates spinning and they are all very close to one another. If one plate gets a little bit out of balance, the...
  16. CarolinAlaska

    To go to the hospital or wait?

    Jae has been suffering for weeks, getting worse for the past several days. Evenings are definitely worse. She can't eat or drink without pain. She has a GI appointment on Wednesday. Should I wait or bring her to ER? She has lost at least 5 lbs.
  17. CarolinAlaska

    Jae's Update: Food Allergies and POTS

    After my youngest daughter was diagnosed with a corn allergy, we finally started making strides towards health improvements for her. This got me wondering about Jae and what might have been missed. I asked her allergy/asthma doctor about whether she had been tested for corn too. She hadn't...
  18. CarolinAlaska

    Update on the girls and resetting for a new, and much better, year

    So, Jae is at Camp Oasis where last year she started with a year of health issues that went from being sent home early from Camp to four hospitalizations from September through April. I've decided to hit the reset button and start off much better this year. So far, things are looking good...
  19. CarolinAlaska

    Change in flavor of food...

    Help. Jae has lost taste for any food. She gets her favorite foods, then doesn't want to eat due to it not tasting right or tasting badly. Currently her meds are 6MP, escitalopram, Symbicort, Flonase, Claritin, B complex, vitamin D, and bone nutrient supplement (mag, calcium and D). Any...
  20. CarolinAlaska

    6MP and appetite

    Jae's 6MP was increased last December. Since then she has had a lack of appetite that made her very picky. Now she doesn't want to eat anything - not because of pain, but because nothing looks good to her. I read that mercaptopurine can take away your appetite. Has anyone else experienced this?
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