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Newly Diagnosed with Crohn's at 21 (Need advice please!)

Hi everyone,
I have been newly diagnosed with crohn's and I have been feeling bad about myself since then. I have been battling with stomach pains, fatigue, anxiety, and depression for almost eight years before I finally demanded to get a colonoscopy because I just couldn't handle the pain anymore. After getting a colonoscopy, ct scan, and blood work I was diagnosed with Crohn's. Although I am so glad I had found an answer to my pain, it has been hard for me to deal with mentally. I am young and just beginning new phases in my life and I feel like it has now been taken from me. It's also hard when it seems that no one understands or believes the pain you are going through. I constantly have people around me trying to tell me how to eat and it's been frustrating to deal with because no one knows what it is like. Has anyone else dealt with this? Any advice for how to handle situations where people are constantly trying to tell you how to eat and what you're doing wrong? Any tips on how to cope after finding out you are chronically ill?
Advice is greatly appreciated 😀
Thank you

  1. I completely feel you pain ! I was diagnosed with Crohn's in my early 20s and spent much of that decade trying to figure out what medication worked and spending lots of time in the hospital.
    When it comes to living with this disease, I would say educate yourself but be mindful of not to Google too much about it as some symptoms that are listed may never happen to you (ex: I have never had blood in my stool in the 12 years that I have had Crohn's which is a common symptom for most) so it will only cause more anxiety and depression for nothing.

    Regarding other people, the bottom line is they are just trying to help. They know they cannot fix it for you so to them, the best way they can help is to offer advice (which probably isn't helpful). I like to just say "ok" and do what I know works best for me. The hardest part about Crohn's is that everyone is affected differently so what works for one might not work for others.
    These articles highlight the issue with unsolicited advice as well as finding support that you may enjoy:
    https://inflammatoryboweldisease.net/living/crohns-unsolicited-advice

    https://inflammatoryboweldisease.net/living/find-tribe

    https://inflammatoryboweldisease.net/living/people-comment-eating

    Lastly, just be patient with yourself. This is a major event that you are adjusting to in your life so it will take time to adjust. Just be gentle with yourself and do your best to focus on little "wins" throughout the day 😀

    Thank you for being here! Please keep us posted on how you are doing!

    --Julie (Team Member)

    1. Thank you for taking the time to reply! I greatly appreciate your advice and will keep these thoughts in mind. I am excited to look through these articles! Thank you

    2. my pleasure!! Stay well and stay positive!


      --Julie (Team Member)

  2. ,

    I'm sorry you have been diagnosed. I know it is so much to process in the beginning. I was diagnosed at 21 right after I graduated college. It was a lot to take in. You might find this post helpful: https://inflammatoryboweldisease.net/living/elizabeth-letter-to-self

    As far as how to handle food advice from others, that's tricky. I tend to always lend an ear to advice and I feel like maybe one day someone will say something worth while--still waiting lol. But mostly I just remain polite and say something like "thank's for the advice but at the moment this food is what doesn't cause me pain" or something like that. That usually makes them understand.

    I also highly recommend seeing a therapist to talk through living with a chronic illness. I wish I would have done this sooner. I see a therapist now and it has made such a huge difference in my journey with Crohn's.

    I hope this helps some. Just know you have support here always and if you have any questions just feel free to message us.

    Things will get better.

    Big hugs, Elizabeth (team member)

    1. Thank you for taking the time to respond! I appreciate your advice and I will definitely keep therapy in mind.
      I am grateful for the support thank you 😀

    2. I’m going to second ’s advice to get a therapist. I was diagnosed when I was 11, and if I could snap my fingers and go back, I’d tell my parents to put me in therapy immediately. Having a chronic illness, especially if it comes with pain, can really mess with you emotionally. Outside support could be a huge relief for you as you process all of this.

  3. Hi Miza,
    This must be so hard for you! I want to remind you that you're allowed to cry. It's so overwhelming. It feels like your life is not going to remain the same. You're never going to be like everybody else, and it's very hard to face it. This morning had me crying after I scheduled my first appointment with a rheumatologist. We don't want to be different, and we don't want to be weaker or disabled. We just want to be normal!!!
    I'm letting you know that it might take some time to find the right medication. But hold on, stay optimistic. One of the best things to do in difficult situations is to find the good in them.
    It's important to have a support network of people to share and be open with, especially with your anxiety and depression. Therapy is a great option. You can just talk to someone like a friend, except you don't have to feel guilty for overloading them with your problems.
    It's great that you learned to stick up for yourself and demand a colonoscopy! Most people have a hard time with that, but sometimes you need a take-charge attitude in life.
    All I can say is I feel you. It's hard, but you'll get through it. God loves you, He loves us all! I hope you'll get well really soon, and please update us when you feel better.
    Jochebed

    1. Thank you so much for your response. I really appreciate you taking the time to respond. It's very hard to stay optimistic sometimes but I am learning to destress in healthy ways and I am considering therapy. Thanks for the support! God bless you!

  4. I remember feeling like I was handed a life sentence when I was diagnosed at age 30, like it separated me from the pack in a bad way. Crohn's is something that afflicted me for many years prior to that, but nobody could put a finger on it until I had a colonoscopy. A Barium swallow lead to a misdiagnosis of diverticulosis which lead to the recommendation of All Bran which lead to a bad blockage, a trip to emerg and a proper diagnosis. Being a laid back guy nobody thought I knew how to take care of myself so I always had dieting tips being thrown my way. I generally listened politely while sifting and sorting through the information. Some of the tips I knew would land me right back in hospital, people who have never had a narrowing in their plumbing have no idea. However, someone did recommend the SCD diet which worked for me though I found it difficult to stay on it. I coped by very slowly improving my exercise and diet regime and kicking a 25 year tobacco addiction. Now I can jog short marathons and do distance cycling, though sometimes I get a bit scared when no toilets are near. I've been able to work a physically demanding fast paced job as a front line manager ever since my diagnosis. It's been 17 years since my last severe flare up, and I'm hoping to come out better after this one. I have a moderate flare up every time the seasons or weather changes, so I never quite forget I have Crohn's. Wishing you the best in your journey with this

    1. Thank you for sharing your journey! I am glad you found a way to improve your symptoms and avoid a flare up. I have never heard of the SCD diet so I will look into it and see if that will help me! Thanks for the support I greatly appreciate it.

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