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Does anyone alse ever feel helpless

  • By Rob Russell

    Lately I’ve done all I can do for my health as far as diet and medications. I have had multiple resections. Have had crohns since i was 14 and am 39 now. Have developes hypothyroidism, RA, gastroparesis, malabsorption. I was hospitalized in january for a small bowel obstruction. They also told me at that time my crohns has spread to my jejunem and I no longer am a candidate for an ostomy. Its kind of dangerous to mess around in the jejunum. It started in my colon spread to my ileum and now is in my jejunum. I had a cat scan yesterday and the doctor asked me if surgery worked for me in the past. I am currently on a Tpn through a picc line. I can’t eat solids at all or am in extreme pain the new steroids are keeping me up at night with the worst heartburn ever and I have acid reflux coming up into my mouth when I lie down. I have had the hiccups for about two weeks straight and every time I hiccup ibfeels like it’s ripping my insides open.

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  • By Piper

    Yes. I was diagnosed with severe Crohn’s at age 20, and am now 55. I gave had numerous bowel resections. I also had a Nissan Fundoplication because of the terrible reflux. My esophagus was attached to my stomach with that surgery, as the flap that is supposed to close and keep acid under control, was not working properly. When that was done (1986), some of the nerves that release acid were clipped. It helped, but I still have problems from time to time.

    I have active Crohn’s all the way through….starting in my mouth.

    It is miserable, it is a deal breaker in the dating arena, it caused me to leave the job I loved, and live on disability. I feel hopeless, and helpless. That said, it us what it is. After 35 years, I am still learning to live with it. I don’t think we ever completely learn, but we still have something to contribute every day, to everyone.

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  • By Piper

    Also, elevating the head of your bed is helpful. Just a little bit to keep the acid down. That might calm the awful hiccups as well.
    How long have you been on steroids? They have nasty side effects as well, after taking them for a long time. I know. Have you talked with your doctor about injectable biologics? Like Humira? Cimzia?

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  • By Rob Russell

    I’ve been on and off of steroids for over 25 years. At one point I was up to 80 mg of prednisone a day. My bones and teeth started to demineralize. Now I have horrible teeth that I am so ashamed of and weak bones. Currently I’m on humira and medrol. Among other meds for my related diseases. The humira isn’t working I’ve been dealing with a bad flare up since January and with repeated cat scans through out the months. Nothing has changed. Doctor isn’t sure whether I need another surgery or to try a different biologic.

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  • By Jay Baruch

    Hi Rob, I’m sorry that your battle is really, really bad with CD. My experience with disease is in the colon, so I don’t have a lot of medical pieces to share that are directly related to how you have been and are now suffering. I was diagnosed back in 1998 after nearly bleeding out, and the first couple of years were terrible. 6MP finally helped me but became so toxic I had to quit it, and now my disease is more active with the development of fistulas and more frequent bowel troubles than I’ve had in a long time. Hoping that Humira will help my symptoms, but it hasn’t had any impact in the first couple months.

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  • By Rob Russell

    Sorry to hear that jay. I’m starting to hear more about humira not being very effective for some of us. It worked great for me at one time now not so much.

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