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Crohn's Disease Forum

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  1. rrhood1

    New and still a little lost with the disease

    Welcome Amberleanne. There is lots of information available through this forum and lots of support. Lots of us have done the Imuran, Humira, Remicade route. You have to see how you do on them - some people have no problems with them and others do. This is a very individualized disease -...
  2. rrhood1

    My story

    I'm so sorry, scum1 - that sounds like a whole load of pressure and stress on you. What tattoos do you have? Sounds like the artistic side of you is through those. Crohns can be very wearing on spouses - it's hard for people to understand what we're going through. Mine thinks that if I'm...
  3. rrhood1

    Fissures or abscesses? Or something else?

    Zebrina: Have you been diagnosed with Crohns or some form of IBD? Are you on any medications? I think you need to see your doctor. It could be something as anal fissures or it could be something more serious. Check in with your GI to be sure. Take care!
  4. rrhood1

    Confused about diagnosis/treatment

    My biopsies were negative but my GI said she'd bet her house, kids and husband that I had Crohns. She was right and the Remicade helped immensely. Good luck!
  5. rrhood1

    Ongoing body aches with Remicade

    My joint pain never went away with either Humira or Remicade. Finally my rheumatologist give me Sulfasalazine. It took a long while to work up to 2000 mg a day but finally the joint pain left & hasn't returned.
  6. rrhood1

    Newly diagnosed

    Denise - ask your doctor about taking ferrous sulfate - I can't tolerate ferrous fume rate either somthey switched me to sulfate instead. Worked for me. BTW, welcome to the forum. There's lots of useful information here and it's a good place to vent if you need to. People here understand...
  7. rrhood1

    Fatigue

    Acne eruptions after finishing Prednisone are common according to my doctor. I got a dabbler bottle prescribed for me for the month I had trouble with it. It stops when the Prednisone leaves your body. Fatigue with Crohns is also very common. Most of us find that the fatigue ranks right up...
  8. rrhood1

    Remicade Club Support Group

    I can't drink alcohol because of some of my medications but Remicade is not one of them. As far as I know you can drink while on Remicade.
  9. rrhood1

    Raising my white flag

    We're there for you, Dragonfly! Keep going. It will be worth it!
  10. rrhood1

    Temperature

    Humira must be stored between 2 - 8 degrees C. It can be stored for up to 14 days at room temperature but must be stored away from light. I used to inject it right out of the fridge. I was always warned against storing it outside of the fridge and was actually given a freezer pack in case I...
  11. rrhood1

    Crohn's Disease and Remicade questions general and specific

    I've been on Remicade for 2 years now. I felt okay after each infusion the first year but not like I was in remission. The second year has been great though. I'm in remission - very few secondary symptoms and my colonoscopy came back clear with only 2 small ulcers at the ileum. It works...
  12. rrhood1

    Remicade Club Support Group

    My infusion clinic gets my dose (1 large tablet in a bottle) and it has to be kept between 2 & 8 degrees C at all times. My pharmacy delivers it to the infusion clinic in a special refrigerator and it's kept in one at the clinic. My nurse mixes it with saline just before she infuses it.
  13. rrhood1

    Remicade Club Support Group

    You're not being paranoid. I've had the same thoughts. However with the Remicade, it has to be kept at such low temperatures that they'd have difficulty transporting it. I watch the nurse do my dose most times.
  14. rrhood1

    Remicade Club Support Group

    I haven't had any issues with feeling fatigued after my infusion. I feel quite well the next day..
  15. rrhood1

    Colonoscopy tips?

    Ick. I hope that's not how it will work with me. I just can't take 4 litres so salty fluid. I was hoping that would work better. Thanks for the warning.
  16. rrhood1

    How do you feel leading up to your next infusion?

    I can definitely tell whe it's time for my next infusion. My back hurts more, I'm tired and some D starts. However the Remicade is working wonderfully so I'm going to keep it going as long as I can.
  17. rrhood1

    Living with Crohn's disease

    Hardest to manage for me is the overwhelming fatigue and the joint pain. During my job, I have to do property inspections. The joint pain was so bad I had to sit down and rest 15 minutes after starting. I never catch up on my sleep - I could fall asleep these days sitting up in a chair...
  18. rrhood1

    Ridiculous euphemisms used by doctors

    While the nurse is putting an IV needle in - "just a little poke". Yeah right.
  19. rrhood1

    Tetanus shot: joint pains ever since

    Yes, I had to get all my vaccinations up to date before starting Remicade. I had the same thing happen. It took a couple of weeks for the joint pain to subside.
  20. rrhood1

    Colonoscopy tips?

    Just had my scope on Thursday, prep was low fibre for 3 days before. Then clear fluids the day before and start the prep at 6 pm that night. Do only half the prep and then the rest the next morning at 6 am. I really hated the Colyte. My GI says I can try Pico- Salate next time as the Colyte...
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