Dear newly diagnosed ulcerative colitis (UC) patient,
Hey, nice to meet you. I’m Jackie, and I’ll be your UC spirit guide for the start of your journey. As a veteran patient myself, I have a few nuggets of information that I’d like to share with you because you’re probably feeling pretty overwhelmed right now.
I remember what that was like when I was first diagnosed. I didn’t know anyone with UC, and I didn’t know anything about the condition. I just knew I was miserable, I was in pain, and it felt like that pain would never stop. Well, I’ve got good news: It can and does stop. While there will inevitably be ups and downs overtime, don’t worry — we’re going to walk through this together.
First thing’s first: Go find yourself a great gastroenterologist (GI)
You need a great doctor. And I’m not talking about whatever GI just so happened to be free the day you made your appointment. Do some research in your area by talking to other people with UC, and find out which GI will take the time to get to know you and treat your disease. This is so important, and can really change your entire experience with UC.
Next, go find some support
We live in a great time for patients because there are so many ways for us to connect with each other. This list of organizations is a good place to start, and there are so many other Facebook groups, forums, and support groups you can find out there. And I mean it when I say this: Finding support will be the single most important thing that you do for yourself with UC. Finding groups of people who I could identify with, who could share advice and just relate to me, was an absolute game changer for me. If you’re lucky, your friends and family are standing by your side during this time, but they will not always be able to truly relate to you unless they too have UC. So go find your people. You don’t have to do this alone.
Be mindful when seeking online information
Before you go diving into the great white internet, remember that not every experience you read about will be your experience. In your journey to find support, you might find a lot of negative or scary things online, but just remember that everyone is on a different UC journey. Some people live with mild UC and have very normal lives, while others (like me) have their lives flipped upside-down — and there are others living with every possible scenario in between.
So while the internet is an excellent place to find support and information to educate yourself about your disease, don’t let the bad stuff scare you. Because here is a secret: Even those of us who have had the worst experiences with UC still came out the other side. Sometimes it feels like I went to hell and back — but I did come back. And you will too.
It’s possible that you’re the only person in your family or life that has UC, so you’re just trying to learn everything you can right now while trying to stay healthy. It can be a heavy lift, but learn everything you can. Read articles, ask questions, and learn the facts because there is a lot of misinformation out there, and there is no sense in anticipating the wrong things. The more educated you are about your disease, the easier and more natural it will be to educate other people in your life. If you cringed at the idea of telling other people… I feel you. I hid my disease from everyone until I was too sick to handle everything on my own.
Telling people is your choice, but I really do recommend telling people in your life and giving them the opportunity to support you. Living with UC can be really isolating, which you probably already know, so give those who love you a chance to keep you involved in the world. It may be hard or embarrassing, but you will be surprised at how many people just want to help you regardless of why you need the help.
There are so many more things I feel like I could tell you but you’re already in a good place for information and support. Take some time to read the articles about UC on HealthCentral, reach out to the organizations I mentioned, join a few groups, and, if you’d like, you’re welcome to contact me.
It’s been nine years since I was diagnosed, and while there were a few bad years in there, there were also some really amazing and unforgettable moments too. This journey is all about perspective and attitude, and the good news is that you are in control of both of those things, even when you may not be in control of your body. And on the days when you just feel out of control of everything, your community is here for you. Lean on us.
I’m sorry that you’ve had to join our club, but believe me when I say you’re in good hands. We’ve got you.
We’re in this together,
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Jackie Zimmerman is a multiple sclerosis and ulcerative colitis patient and the founder of Girls With Guts. Since diagnosis, she has blogged her IBD journey at Blood, Poop, and Tears. Jackie has worked hard to become a strong voice in the patient advocacy community. In her free time (what free time?!) she spends time with her two rescue pups and plays roller derby. She’s online @JackieZimm.