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I Have Ulcerative Colitis. Now What?

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Raise your hand if you’ve had some version of that thought after receiving an initial diagnosis of UC. I was 14 years old when I was diagnosed, so I honestly don’t remember my first reaction to the news. I think I was just relieved that we finally had an answer for my bloody stools, extreme weight loss and constant nausea. 

But over the last 20 years, I’ve met so many other people living with UC, and I’ve heard so many different stories about those first days, weeks, months and even years following the news. I’ve given speeches to large groups of people about life with UC. I’ve spoken on webinars about my experience. I’ve raised money for nonprofit organizations to support research and a cure. Most of my best friends have some sort of connection to IBD outside of me. I won’t say I’m an “expert” on the disease itself, but I will say I’m well-versed in navigating the “Now what?” of it all. Because I promise you, if you live with UC, you will have many “Now what?” moments. 

If you’ve been recently diagnosed with UC, take a deep breath. That’s the first step. Here are some next steps after that:

  1. Remember that it can and will be OK. I can’t speak for everyone’s experiences, but I can speak for mine when I say: it’s possible to live a full life with UC. Especially in the immediate moments following those fateful words, it’s important to breathe, let it sink in and remember that there are steps toward being OK that can be taken.
  2. Celebrate having an answer. I’ve heard so many stories about it taking months, even years, for people to finally land on UC. The symptoms can be linked to many different causes, and research and expertise surrounding inflammatory bowel disease are still developing. So now that you know what’s going on, you and your care team can begin to tackle it!
  3. Give yourself a few days. There is much that can and will be done, but it’s important to take some time to just process the news. Some people need to grieve, others need to rest and many just need to take a long, slow exhale for the first time in days. I still do this today after bad days or periods of a flare-up. I give myself space to grieve and also celebrate coming out the other side.
  4. Gather information. No, I don’t mean diving head first into studies and convoluted medical jargon (but if you want to, go for it!). I mean Googling and reading trusted sources (like The Mighty or .org, .edu or .gov websites). The Crohn’s and Colitis Foundation has a lot of good information for new patients. Knowledge truly is power. When I was first diagnosed, my mom took me to a symposium. I met some incredible people my age and joined a training program that day.
  5. Find support. This can be one of the scariest things to do. The story many of us tell ourselves is that No one wants to talk about the bathroom. And I totally get it! However, I tend to lean into the “rip the bandaid off” approach. Your close friends probably already suspect something was up. Tell them! Facebook has several groups available too, and The Mighty community has one you can join with the app (fun fact: I’m a group leader!).
  6. Participate in your treatment. Chances are many options are being thrown your way regarding treatment. Depending on the severity of your disease, some may make more sense than others. Don’t be afraid to read up on the options and ask your doctor questions. I’ve been at this for almost 20 years, and I still ask what every single medication, scope, test result or recommendation means. 
  7. Adjust your goals, don’t delete them. Did UC derail or postpone your plans? I feel you. I’ve been through that over and over. It’s important to be realistic, but don’t let UC take away your dreams entirely. There are ways to work around bathrooms, medication, energy levels and anything else. Will it take some trial and error? Probably. But it’s doable. I ran my second marathon after a rough patch with my UC, and my goal simply changed from running a certain time to just finishing. 
  8. Remember that everyone’s story is different. The most common question people ask me is what type of medication I take. And I never like to share the answer, because every single case is different. We are working toward more personalized care when it comes to UC, but we are not there yet. 
  9. Know the future is unpredictable. In college, I lost a friend to cancer who also had UC. It was a complicated story, but I remember feeling so scared that I would die of UC or colon cancer. I carried that fear around for years. Over time, with therapy and a lot of self-growth, I was able to let go of that. The truth is, the future is unpredictable. You’re here now, reading this, which means you have a good life to live ahead of you. 
  10. Buy really good toilet paper and baby wipes. Trust me. 

Regardless of where you are in your UC journey, I hope this list is helpful to you. It’s going to be OK, and you’re doing a great job.

Originally published: January 15, 2021
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