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  1. Dyana

    Stricture, Poor Diet, Healthy Ideas?

    I survive on tuna fish salad with mayo on crackers- no fruit or veg except cooked to wilting. TERRIBLE diet but it works.
  2. Dyana

    Home Remicade infusions- pros/cons/ your experience?

    I have been having home infusions for almost 2 years. They fit MY schedule. No waiting. extremely happy with the care AND my insurance PAYS ME $500 each infusion for saving THEM money.
  3. Dyana

    CVS Caremark cooler

    Call the provider- They would know what is allowable and /or replace it if needed!
  4. Dyana

    My Crohn's Jigsaw

    WOW- That took some TIME I don't know some of the terms used- sorry What is Banding 2012-2014 and BAM 2014
  5. Dyana

    Vulval Crohn’s Disease

    Wow, That's informative. Thank you for the information
  6. Dyana

    Advise please

    I had the SAME thing- from chow mein! never eat sprouts! Ride it out. pain meds if you must -That is what ER will give you after a CT scan and hold you at least overnight. takes a couple of BM's use miralax. Good luck
  7. Dyana

    Cramps question

    I have the same cramping problem. I call it a crohn's attack. about every 3 to 6+ weeks something will get "stuck" usually something I have eaten before with no issues. I have a partial blockage, appears to be from old scar issue and inflammation. GI surgeon would like to wait for surgery if...
  8. Dyana

    Combo therapy? (infliximab and azathioprine)

    I take both also. I also took the aza with humira and when I changed primary meds ( had anti bodies) continued with aza- so started remicade with aza at same time. on both about 2 years now. aza does not improve the remicade it just lowers the chances of anti-bodies being formed to the Remicade...
  9. Dyana


    welcome! I think "incredibly warped sense of humour" is your best feature! I have nothing to offer you medically. 30 yrs Crohn's. Never your meds and temp ilistomy - reversed now. Good luck and someone with med info should answer soon.
  10. Dyana

    Overweight with Crohns?

    I am giant. always have been. Crohn's for 30 years. 4+ surgeries. Humira, cimzia now remicade. A typical but still crohn's. There are exceptions to every "rule". No case is the same.
  11. Dyana

    Need advice again.

    Yes, the nurse mixes the remicade and sets up the IV and monitors the entire time. Very relaxing.
  12. Dyana

    Need advice again.

    I had humira and cimzia through injections. Hated the "snap" of Humira- my hand would always jerk at the sound- My sister used to hold the wand to make sure It connected- I have heard they changed it since and you can get a type that does not SNAP now. Cimzia was fine- self injections and no...
  13. Dyana

    Stricture and post flare up help!!!!

    I have a narrowing and the surgeon wants to wait also. I have had 3 surgeries already so waiting as long as possible makes sense. When something gets stuck and the pain is incredible I take a tramadol and if that doesn't help I take a 5mg oxy and ride it out. Going to the ER is useless- they...
  14. Dyana

    I can’t cope with this.

    Some times you need help from the outside. have you looked into a support group that has meetings you could attend? some hospitals have such meetings. For Crohn's or other longterm conditions? Sometimes there are meeting for family of the person who has a longterm condition- somewhere your son...
  15. Dyana

    Flare after 6 month of succes with Humira, what's the next step?

    My 1st biologic was Humira with very low Aza to help fight antibodies, When it appeared to not work as well it originally did. They took an antibody test. Here they send the blood to prometheus labs in California- the test is not covered by my insurance. I paid $250 each for 2 tests. Antibodies...
  16. Dyana

    Short term immune response just before infliximab infusion starts

    I have always prepped with 2 tylonol and a benadryl. Maybe that would help. I wonder why you are not getting the pre meds.
  17. Dyana


    I have had Crohn's over 30 years. 6 surgeries and multiple pcp's and gastro doctors. Now on Remicade for 3 years. I just changed gastro's because the one I had was very far away and really didn't appear to be the least bit interested in anything but the actual intestines. Like most people I have...
  18. Dyana

    Ileostomy reversal soon

    I also had a temp for 6 months and then a reversal- I don't think I lost my ileocecal valve. It went well. no issues other than problems until it healed. stools can occasionally be formed. I am on Remicade since. good luck- It is SOOO nice to have indoor plumbing again!
  19. Dyana

    Weird pain

    I have had Crohn's since 1989, multiple surgeries including ostomy and reversal. 5 times this year I have had intense lower right abdominal pain- bad enough to rush to the E.R. after suffering for hours. During this pain I have tried Heating Pads, Massage, repositioning, Cramp RX from Gastro Dr...
  20. Dyana

    Falling asleep at work

    I work a desk job and find it very fulfilling. I have plenty of work to do and can self manage my day. I usually have "lunch" between 11 and 12 at my desk while working. Everyday I have to fight to stay awake in the afternoon. I literally fall asleep sitting at my desk while struggling to stay...