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Kinda Wishing I Had Skipped That Appointment Now

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  • Kinda Wishing I Had Skipped That Appointment Now

    So yesterday I had an appointment with a gastroenterologist (Dr. S) that my surgeon had put a recommendation in for. I thought it might be some good news about possibly getting my colostomy reversed, since over the phone his receptionist had mentioned that he wanted to discuss my colonoscopy during the consult.

    I went to the appointment, but instead of good news, I got some meh news, and some bummer news.

    Meh News: For the time being, I'm still gonna have the colostomy. He wants to see me again in four months time.

    Bummer News: In addition to the pills my surgeon prescribed for my crohn's, Dr. S also wants me to take an immunosuppressant (sp?). Apparently it can also be used to treat crohn's, according to the info he gave me to read.
    While anything that keeps my crohn's in check is a-ok by me, this means that now I'll have to be really careful that I don't catch anything, since I won't have an immune system any more. And I work with the public, so I'm gonna have to become paranoid about every little cough or sneeze someone has.
    my favourite author is neil gaiman. - me
    it is? I don't like potatoes much. - the chatbot I was talking to

  • #2
    Your post made me actually join. I have been a long time lurker. I have crohns and my mom also has it so I am very familier with it. I am guessing you were put onto Remicade as the immunospressenant. I had been on Remicade for about 3 years and my mom has been on it over 10 years now so if you have any questions or want personal experinces just message me. I did get a few more sinus infections than I did before but honestly I loved Remicade (minus the infusion time) and would have stayed on it if I didn't become allergic to it. I am sure your doctor told you it is very important to get your flu shot and also TB tested but neither are bad. The great part about the Remicade route is that it treats the damage that the disease caused rather then just treating the inflamation.

    I myself have stoppped using Remicade (evil throat closing) and then was switched to Humeria which I actually liked better (one shot every other week at home) but I had a bad reaction to that (numbness in the toe) so now I am on a new drug. I much prefer a shot or an infusion rather than having to remember a pill every day. In my opinion it makes the disease less of a part of my life.

    I am no doctor this is from personal expereince and I feel that everyone should know at least one person with Crohns to help them throuh. My luck was that my mom has had it since 1976 so I had a resident expert.

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    • #3
      My husband had Ulcerative Colitis. His was really bad and the medication that he was put on barely worked for just a few months. He ended up having his colon taken out at the Mayo Clinic and had three surgeries altogether. He had to wear the bag for the first year and during the third surgery they were able to actually remove it (due to the J-pouch his surgeon formed during the first two surgeries). He's a lot happier and healthier now. Good luck with it all! I want to eventually join the cause to help find the cure for Crohns and Colitis because of how heavily impacted we were by Colitis. If you ever need to talk or anything then send me a message!

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      • #4
        Thank you both for your support.

        amchurch, I was put on Azathioprine, not Remicade, although I haven't actually started taking it yet. I have an appointment with my family doctor tomorrow morning (I can't believe he's working Christmas Eve, but I'm not complaining, since that means I don't have to thanks to the appointment! ) and I'm going to discuss things with him before I actually start it.

        I was given a list of side-affects and risks when I left Dr. S's office, and it scares the shit out of me, so I decided to wait and hear what my doctor has to say first. If he feels that the negatives outweigh the positives, I won't take it, especially since I'm managing just fine on my current medication (5-aminosalisyclic acid). But if he feels that the positives outweigh the negatives, then I will.

        Sunsetsky, I'm glad to hear that your husband is doing fine now, and that he was able to have his bag reversed.
        my favourite author is neil gaiman. - me
        it is? I don't like potatoes much. - the chatbot I was talking to

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