3 Tips If You've Just Been Diagnosed with UC
As someone who was diagnosed with ulcerative colitis (UC) 20 years ago, I have experienced a lot. I also know firsthand how difficult it is to navigate a new diagnosis that you probably don’t know much about.
After all, most people can’t truly understand the complexities of living with a chronic illness until they develop one. Or, in some cases, have a loved one who suffers.
A new diagnosis of ulcerative colitis is overwhelming
When you hear that you have a lifelong illness like ulcerative colitis, it can seem incredibly overwhelming. After a person is diagnosed, the majority of doctors will try to explain what the disease is, share what medications he/she believes are right, and/or recommend some lifestyle alterations.
While those things seem pretty standard, they can still leave a person and their loved ones extremely confused. This leads many people to scour the internet in search of information, education, alternative ways of healing, etc.
Connecting with other people for support
It is also common for newly diagnosed patients to read articles, watch videos or scroll through social media with the hope that they will understand their disease better through other patients. Depending on the person, there might also be a desire to join support groups (online or in-person) in order to connect with other people experiencing the same struggles.
Doing those things is perfectly natural and valuable in many ways. Connecting with other people who suffer from Crohn’s disease or ulcerative colitis has shown me I am not alone. It is what caused me to go from keeping my disease quiet for 12.5 years to opening up about it.
However, there is still an enormous amount of information about UC and it is often difficult to tell what is accurate and what applies to you as a newly diagnosed patient.
Tips to handle a new UC diagnosis
Below are three tips if you have just been diagnosed with ulcerative colitis:
1. Remeber that everyone is different
Your ulcerative colitis (UC) is not necessarily going to manifest the same way as other patients. Inflammatory bowel disease (IBD) in general is not a one-size-fits-all disease. Just because you hear of something happening to someone else, doesn’t mean it will happen to you.
2. Find an IBD specialist
Find a gastroenterologist who specializes in Crohn’s disease and ulcerative colitis. I know in some areas finding a GI who specializes in IBD patients is next to impossible. If that is the case, I recommend choosing a doctor who has a great bedside manner, isn’t afraid to say he/she doesn’t know something and stays up to date on the latest research.
3. There is no cure for UC
Understand that there is no cure for ulcerative colitis, even if you come across countless websites that tell you otherwise. While there are stories out there of someone who changed their diet, incorporated a new supplement, adopted a more active lifestyle, and feels great without any medication... that is rare.
It also isn’t the whole picture. And, for the record, that person you read about has not CURED themselves but rather is lucky enough to be in remission.
New treatment options on the horizon
There are also so many new treatment options out there that are so comforting to know. More and more research and awareness are being done to help those like you who are suffering. While I can’t say the majority of people know what UC is or understand the disease, there is more awareness.
Many physicians, medical researchers, patients, and pharmaceutical companies are working tirelessly to find new options for you. You will be okay.
Remember that you are not alone
For anyone reading this who just received a diagnosis, you are not alone. I know it can feel that way. I have communicated with and am connected to MANY patients who suffer from a form of inflammatory bowel disease (IBD) and I can’t think of one person who hasn’t shared that feeling in some shape or form.
Are you newly diagnosed with Crohn’s disease or ulcerative colitis? Do you feel alone? Has anything helped you through this challenging time? Do you have any questions for the community?
Do you have any advice for someone newly diagnosed or seeking diagnosis?
Do you have a diagnosis story to share?