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Newly diagnosed

  • By Sofinium

    So I’ve been struggling with stomach problems for 10 months now and the doctors kept on trying to tell me it was something else. After finally being tested I’m being referred to hospital to get more answers.

    Obviously I’m worried but also relieved. How did people cope when they first got the news. Also what should o expect from the first few months

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  • By Brooke Abbott Moderator

    Hi Sofinium,

    I’m sorry that you’ve been dx with IBD, however, I’m glad you actually got a proper dx and welcome to the community. You’ll find that while having to live with this disease, you will also make new friends.

    People act differently when they are diagnosed. I for one am glad I had someone there with me, because I went into complete shock and denial at first. And then forgot what the doctor said, because I was in such shock and denial, from fear. The first thing you should know is that this is a very personalized disease. You may have things, feel things, respond to treatments differently than anyone else. So do not feel discouraged or compare your disease space to others. You should also know that you cannot cure, IBD. But you can put it in remission with whatever treatment option your body responds to. Diet, exercise, or surgery will not cure IBD. But for some it can help keep symptoms at bay or put people in remission. I would try and find what works for you…it may take a little while, and that’s okay. Keep journals and document what works and what doesn’t. Be patient with yourself. Make notes and take them into your doctor’s appointments. Make sure you have a IBD specialist as a GI. And try to include your family and friends into your diagnosis. Give them as much information as you. And educate yourself as much as possible.

    And remember we are here for you!
    -Brooke
    (inflammatoryboweldisease.net Team Member)

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  • By Julie Marie Palumbo Moderator

    Hey Sofinium!

    First, you are being wise by connecting with individuals on here to gain information and support 🙂

    I am happy to hear you are getting a proper diagnosis, and hope you have some answers soon!

    I agree with Brooke in making sure you have your support system informed and on board. One of the first things I did when I was diagnosed with Crohn’s Disease in 2009 was reach out to my closest family and friends and leaned on them many times for support (and to celebrate when getting good news, as well!)

    Another important step that I took was to do a little bit of research about the disease, but not too much as every patient is different so keep in mind that the symptoms one person experiences is not the same for everyone. Also, be sure that your research is done through credible resources (like here!).

    Lastly, the one thing I did that truly helped, and that I coach others on doing is creating a firm foundation of self love and gratitude. There may be times that you just don’t feel like the best version of yourself so creating a gratitude journal where you list 3-5 things you are grateful for every day will truly help on the days that you are just not 100%–and allow you to see that your life is truly a gift 🙂

    Continue to reach out if you need anything else!!
    –Julie

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  • By thedancingcrohnie Moderator

    Hi Sofinium,

    I’m sorry about your diagnosis, but just know that you aren’t alone and that it is totally possible to gain control and thrive with IBD.

    I agree with everything Brooke and Julie said so I’ll just add on.

    A main thing I would suggest is doing your own research and tackling your disease from all angles. In other words, don’t just rely solely on medication or don’t just rely solely on diet and holistic treatment. Do it all! Diet is so important. Supplements, probiotics and other treatments are great too. For example, I use essential oils on the daily and they give me incredible relief. But IBD is a tricky disease and the more tools you use to dismantle it, the better off you will be. Of course, I’m just speaking from my personal experience.

    Also, if you are not liking a doctor and not getting any results. Don’t waste your time. Go for a second opinion and keep it moving. You always need to be comfortable with your doctor, it is so key!

    And don’t be hard on yourself. You will have days where perhaps you don’t make the smartest choices, like reaching for the pizza you are craving or pushing yourself to be social and paying for it the next day. IBD is hard. We all have those moments where you just want to feel “normal” again and in turn “slip up.” Just forgive yourself, pat yourself on the back and get back to following your routine. We are all human.

    Overall, you will get through this. You have a community here. Don’t hesitate to reach out for support, that’s what we are here for! Things will get better.

    Always dancing,
    Elizabeth (team member)

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