Deja Vu . . .

I left work yesterday because of stomach pains, good ole cramps.  Bleeding has been back and looks like it won’t go away until I start some new meds or go back to my dear friend Prednisone! The bleeding came back shortly after I weaned off the drug . . I think my GI lied to me when he said I was in remission. . . Is it normal for it be so short lived? 1 month after colonoscopy symptoms came back . . . sighs . . Exactly a year ago I was experiencing stomach cramps and other similar symptoms. Those symptoms eventually got worse during the month of March which led to my first ever hospital stay last April. April 2015 will always be a permanent memory in time.  I hope I won’t be going back to the hospital anytime soon.

I guess my Crohn’s is definitely moderate-severe, I’m no longer considered a mild case. Been on Humira for the past 5 months has not been my saving grace since it worked 3 out of the 5 months. So what’s the next step? More Humira shots? Or the forbidden word in my vocabulary, Remicade! I’ve heard Remicade has done amazing things and my GI has mentioned it more than once,  but I don’t like the idea of sitting in the hospital for 3-4 hours hooked to an IV, sounds like chemo therapy. Will I be in a room with cancer patients? . . gees, how depressing. I’ll find out for sure the next steps when I see my GI in two weeks. The conversation with my GI will probably sound like this, “Krystal why didn’t you inform me as soon as the bleeding started? You should have came to see me.” How’s the job?  Are you stressed? You better not be stressed, I’ve told you, you have to reduce your stress”. My responses will probably be, “I’m sorry, you’re right I just don’t want any new meds. Job is crappy and I’m beyond stressed, but I moved closer to reduce the stress of commuting . .  can I get points for that?!”

As always, living one day at a time and remaining hopeful.

6 thoughts on “Deja Vu . . .

  1. Remicaide is given at an infusion center- not always at a hospital. And yes, cancer patients are present for their chemo. But Oddly enough at my infusion center, the other people in the room are there for severe migraines and getting treatment for that. Overall- it’s not as scary as one would think.

    As for the humira- your doctor can increase the frequency of which you give it to yourself and/or your doctor can add an immunosuppressant (6-MP or imuran; possibly methotrexate) to help the drug work better.

    You still have options. Stay strong!😊

    Liked by 1 person

  2. My Daughter is on Remicade. The 3-4 hours hasn’t been a problem, bring something to do though. You likely can pick your infusion center, find one that looks the most fun. My daughter likes it because the center has cable tv at each station, which we don’t have at home 🙂

    It does tend to energizer her immediately after and then knock her out the next day. So a Thursday or Friday infusion is best for her (though the center tends to reserve Fridays for more frequent visitors)

    The biggest frustration I have with Remicade is the price. My insurance covers the treatment, but there are so many co-pays to go with the treatment. I think we get 3 bills, 1 for the drugs, 1 for the center, and 1 for the administration or something like that. I guess it probably works out the same overall out of pocket as Humira though – since we are on an 8 week cycle.

    Liked by 1 person

    1. Thank you Ed! this is very helpful, I just hate hospitals and only wanted to be in one while giving birth. lol but have a feeling this will be the next in treatment.


  3. Ugh, I’m sorry the funk is coming back. I’ve seen it’s possible to develop antibodies to biologics which can prevent them from working as well, but it usually doesn’t happen with biosimilar ones like humira and cimzia. I just started Imuran to take along with Cimzia, as it’s supposed to help it work better, and certainly prednisone will do the trick. I hope you get Crohn’s AND the stress under control soon! Hang in there, lady 🙂

    Liked by 1 person

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