Just Diagnosed with IBD? These 5 tips are for you!

Written by: Tatiana Skomski 


You may already know this story if you’ve been following me for a while now. But for those who don’t know, I was diagnosed with Ulcerative Colitis at the end of 2015 after a pretty traumatic reconstructive jaw surgery. I had been sick for pretty much my whole life, I just could never get an answer as to what was actually wrong with me.
When I had my first flare (at the time I didn’t know it was a flare) immediately following surgery, the doctors did a colonoscopy and said it was one of the worst cases of Ulcerative Colitis they had ever seen. They told me I would probably have to have surgery to remove my colon because the meds probably wouldn’t work. Now, as a 21 year old girl in college who was just admitted to the hospital the day before, this was earth shattering news. Yes I had been sick my whole life and I wanted answers to what was wrong with me, but a chronic illness with no cure? No, thank you.
I definitely went through a period of denial when I was first diagnosed. The gravity of the situation was just too much for me to mentally handle, so in turn I pretended it wasn’t happening. Once It finally settled in that it was definitely happening and there was nothing I could do about it, I learned to embrace my diagnosis. Years later I actually realized I wouldn’t be the woman I am today without it. But that’s a story for another time.
These are all things I wish someone would have told me when within the first year of my diagnosis.
  1. You are your biggest advocate - When it comes to speaking up about your disease or how you are feeling, I know it can feel scary and overwhelming. But once you learn that not only is it okay to speak up, but that it’s actually the only way you are going to get the things you need, you’ll wish you would have done it sooner. And whether this is to your doctor, family, or friends, taking the control back over your health is the most powerful thing you can do for yourself. Remember, you can’t expect people to know how you feel or what you need. Only you know that.
  2. Practice self care and self love as much as possible - Being diagnosed with IBD (or any chronic illness) doesn’t make you any less of a person, it gives you incredible strength, but it takes time to know and learn that. And not everyday is going to feel that way. Be patient with yourself and love yourself as much as possible. Whether that means doing one thing each day to make YOU happy (which I highly recommend, by the way), or picking a day each week or month you totally dedicate to self care, taking time to LOVE YOURSELF is critical in coming to terms with your diagnosis.
  3. Lean on those around you for support - Whether those people are your friends, family, roommates, significant others, or other people living with IBD, lean on them during good times and bad. It’s really easy to internalize this disease because it’s invisible, so it’s important to remember that you don’t have to do everything alone. And it’s okay to ask for help! Also, try and find a community of other people with your disease (hello Instagram). This is something I have done recently and it has been a GAME CHANGER. I now have a handful of women my age who have the same disease as me I can call or text when I need someone to talk to who just knows exactly what I’m going through. If you don’t know where to start, I’m here to support!
  4. Don’t be ashamed - You didn’t choose this disease and it doesn’t make you any less beautiful, sexy, powerful, capable, etc. For me since I have IBD, people have a hard time talking about anything involving poop, but that doesn’t mean I feel shame talking about my disease. People can get over it. And once you accept that, you’ll probably actually realize that a lot of people want to learn more and understand what you’re going through. The more you talk about it with others, the more comfortable you get and in turn less ashamed. ROCK THAT BLOATED BELLY BABE!
  5. Listen to your body - This one may seem a bit obvious, but it’s just too important not to mention. For so long before my diagnosis, I ignored all of my body’s signs that I needed to slow down and rest. I think it’s so easy to just pretend like nothing is wrong when you want to feel “normal.” Even after my diagnosis I went through a period of time when I was in denial that I had a chronic illness. I tried to force myself to do things when I wasn’t feeling well or not mention to people that I was actually in a lot of pain because I wanted to put on a brave face. Over time I realized that when I don’t feel well or I’m in pain, that’s my body’s way of telling me something is wrong and therefore I need to rest. So take it slow and know that some days you won’t feel well. I know it can be frustrating but it will pass! The more you ignore your body, the worse it will get.
There’s obviously a lot more advice I could give, but these felt like the right place to start. We’re all so different and our chronic illnesses will need different things from us, but overall I think these were the things that helped me the most in the beginning. Remember that you are never alone and that you will get through this. It may feel like your world is ending, but take it from me that you’re on your way to greatness.