I was in the prime of my life when I was diagnosed with ulcerative colitis (UC). I had recently bought my first house, and I was working a great job. I was enjoying life as a young 20-something. I didn’t know anyone with UC, and I didn’t really understand what it is. The diagnosis was a total shock to me. What would my future look like?
Getting a UC diagnosis can be scary and overwhelming. Looking back, there are some things I wish I had known before starting my journey with the condition. Hopefully, you can learn from my experience and use the lessons I’ve learned as a guide as you start your journey with UC.
I hid my diagnosis until I was too sick to hide it anymore. I was so mortified to tell people I had UC — the “poop disease.” I kept it a secret from everyone to save myself the embarrassment.
But I had nothing to be ashamed of. I let the fear of people being grossed out by my disease get in the way of receiving treatment. Doing so did significant harm to my body in the long run.
The symptoms of your disease do not negate its severity. It’s understandable if you feel uncomfortable to open up about such a personal thing, but educating others is the best way to break the stigma. If your loved ones are aware of what UC really is, they’ll be able to provide you the support you need.
Pushing through the tough parts of talking about UC allows you to receive better care from your loved ones and your doctor.
Hiding my disease for so long prevented me from getting the support I needed. And even after I told my loved ones about my UC, I insisted on taking care of myself and going to my appointments alone. I didn’t want to burden anyone with my condition.
Your friends and family want to help you. Give them the chance to improve your life, even if it’s in a small way. If you’re not comfortable talking to your loved ones about your illness, join a UC support group. The UC community is quite active, and you can even find support online.
I kept my disease a secret for too long. I felt lonely, isolated, and at a loss for how to get help. But you don’t have to make that mistake. Nobody has to manage their UC alone.
UC is no picnic. But there are a few over-the-counter products that will make your life a little easier and your butt a bit happier.
The best-kept secret in the UC community is Calmoseptine ointment. It’s a pink paste with a cooling element. You can use it after using the toilet. It helps with the burning and irritation that can happen after a bathroom trip.
Go get yourself a huge stock of flushable wipes right now! If you’re using the bathroom frequently, even the softest toilet paper will start to irritate your skin. Flushable wipes are more comfortable on your skin. Personally, I think they leave you feeling cleaner!
Extra soft toilet paper
Most brands have gentle options for toilet paper. You want the softest toilet paper you can find to avoid irritation. It’s worth the extra money.
A heating pad works wonders when you’re cramping or if you’ve been using the bathroom a lot. Get one with a washable cover, various heat settings, and an auto-shutoff. Don’t forget it when you travel!
Tea and soup
On days you need a heating pad, also have hot tea and soup. This can provide relief and help your muscles relax by heating you from the inside.
Some days, eating solid food will be painful or uncomfortable. That doesn’t mean you should skip out on meals altogether. Having supplement shakes on hand will give you some nutrients and energy when you can’t stomach food.
After my UC diagnosis, I trusted the words of my doctor like they were holy scripture and didn’t ask any questions. I did as I was told. However, finding the right fit for a doctor can be just as tricky as finding the right medication. What works for one person might not work for another.
There’s nothing wrong with asking your doctor questions or seeking a second opinion. If you feel like your doctor isn’t listening to you, find one who does. If you feel like your doctor is treating you like a case number, find one who treats you well.
Take notes during your appointments and don’t be afraid to ask questions. You’re the one in the driver’s seat. To get the treatment you need, you have to understand your illness and your care options.
At the lowest point of my UC journey, I was blinded by pain and frustration. I didn’t see how I could be happy again. It seemed like I was only getting worse. I wish I had someone to tell me that it would get better.
No one can say when or how long, but your symptoms will improve. You will regain your quality of life. I know it can be hard to stay positive at times, but you will be healthy — and happy — again.
You need to accept that some situations are out of your control. None of this is your fault. Take one day at a time, roll with the punches, and look only toward the future.
There are so many things I wish I had known when I was diagnosed with UC. Things I never imagined happening suddenly became a regular part of my life. It was a shock at first, but I was able to adapt and so will you. It’s a learning process. In time, you’ll figure out how to manage your condition. There are endless resources online and lots of patient advocates who would love to help you.
Jackie Zimmerman is a digital marketing consultant who focuses on nonprofits and healthcare-related organizations. In a former life, she worked as a brand manager and communications specialist. But in 2018, she finally gave in and started working for herself at JackieZimmerman.co. Through her work on the site, she hopes to continue to work with great organizations and inspire patients. She began writing about living with multiple sclerosis (MS) and inflammatory bowel disease (IBD) shortly after her diagnosis as a way to connect others. She never dreamed it would evolve into a career. Jackie has been working in advocacy for 12 years and has had the honor of representing the MS and IBD communities at various conferences, keynote speeches, and panel discussions. In her free time (what free time?!) she snuggles her two rescue pups and her husband Adam. She also plays roller derby.