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Newly Diagnosed

Hello everyone.


Just joined this forum and I was diagnosed with Crohn's yesterday (for the second time). Back in July 2020 I got very sick for 10+ days and ended up having an ulcer in my large bowel. After having a CT scan, my first doctor diagnosed me with Crohn's and put me on Mesalamine. My next appointment I told him I still didn't feel well and he wouldn't do anything about it and said it was the other medications I was on and to talk to my primary care doctor. I didn't like this answer and his general attitude and how I had to pry information out of him so I decided to find a new doctor.


Before I get to that, I just wanted to explain that most of my life I have had stomach issues (I'm 37 now). I can't say it was Crohn's for sure, but in first grade I used to go to the nurse's office all the time because I didn't feel well. After nothing happened I eventually stopped talking about it and just lived with it. I was a very shy and timid kid and didn't push the subject with my mom (my father wasn't really in the picture). I also didn't have health insurance. In college I eventually just self diagnosed myself with IBS. I decided this because while my bowel movements were usually soft, I never really had bouts of diarrhea that were out of the norm, so I didn't think it could be IBD. I'd also like to point out that I used to suffer with anxiety/depression. While it's still something that is kinda there (more anxiety than depression), I wouldn't say I "suffer" from it anymore. This lead me to start using opiates, first oxycodone/oxycontin and later heroin. One of the reasons I was hooked so easily is that it helped with my stomach pain/issues. I have been on methadone for a few years now without a relapse, although I wouldn't say I'm clean because of the methadone use. Anyway, enough of this tangent 😀


So, I found a new doctor, had another colonoscopy w/ biopsy done and the doctor said everything looked fine. That threw me off because I didn't feel fine. I got an MR Enterography and then bloodwork and a stool sample and my sed rate/C reactive protein/calprotectin were all elevated while infectious bacteria cultures were negative. I was pretty sure my first diagnosis was correct and I was just waiting for my appointment to go over the MRI and bloodwork. This brings me to yesterday and my second diagnosis of Crohn's.


I took my first dose of prednisone this morning and my doctor is working with my insurance to get me approved for Humira as I also think I have psoriasis. The idea of finally getting treated for something that has made me feel awful for a lot of my life is amazing. I already knew I had something that was going to affect me the rest of my life, so while Crohn's isn't a good diagnosis, it's still a diagnosis, and I can start treatment. I feel hopeful for the first time in quite a while. I may even be able to get off methadone soon.


I apologize for the long post, I know everyone on here has a story with similarities. I just wanted to introduce myself and hopefully we can help each other get through the bad times and enjoy the good. Thanks for listening.




Rob

  1. Thank you so much for sharing your intimate story, Rob, and for being so open. I am so sorry that you struggled for so long without a proper diagnosis, and I think you nailed it with the attitude that while being diagnosed isn't great, at least you have a diagnosis that you can start treating.
    When under control, living with Crohn's is not bad at all. Maybe a few inconveniences occasionally, along with routine labs or imagining, but nothing quite like what you have been living with.

    I hope the Humira helps and that the Prednisone in the meantime at least eases your symptoms and allows you to take control of your mental and physical health. Thank you for being here and please keep us posted on your journey!

    --Julie (Team Member)

    1. thanks so much for sharing your story so openly and honestly! I am glad you are feeling hopeful! I will cross my fingers that you see a decrease in symptoms really soon. The Pred is usually good at that! 😀


      ~ Sahara (team member)

      1. Your experiences with getting diagnosed reminds me of my own. I was sick for 3 years before a diagnosis. This was 1975. They considered then that colonoscopy a precarious procedure. Prednisone & Imuran saved me for many years. Now that biologics are available, maybe there's light at the end of the tunnel. They are not without risks. I recently had a 2 month flare & I am improving. My advice to all suffers is be your own advocate. Read, read everything available. Explore how our bodies function. Take care of your mental health by counselling & proper meds. It will make a difference.

        1. Thank you for the positive words . I believe that advocating for yourself is so important! I wish I would have been my own advocate much sooner in my journey. I hope you are feeling okay today. Hugs, Elizabeth (team member)

        2. pretty solid advice!
          Being your own advocate is so important, and to do that, you do have to have a reasonable knowledge of your condition. More importantly, you have to have a good knowledge of how your disease effects YOU!

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