Just Diagnosed With Crohn’s Disease or Ulcerative Colitis? Advice from Patients Who Have It, Too!
Welcome to The IBD Family!
If someone hasn’t said it already – welcome to the family! If you’re feeling scared, confused, and overwhelmed you’re not alone. Every single one of us living with IBD has stood where you stand now as a new patient who has just been diagnosed with Crohn’s disease or ulcerative colitis.
Like most people one of the first things you probably did after being diagnosed was Google your health condition to learn more about it. If it’s left you even more confused than you were when you started there is good reason for it. There is an overwhelming amount of information online about Inflammatory Bowel Disease and so much of it is misinformation. Most likely you will also find that a lot of the information is contradictory. You go to one website that says one thing and the next says the exact opposite! How do you sort fact from fiction when you’re a new patient?
*Deep breath* It takes time but you’ll get there through experience, time, and the amount of effort you put into wanting to learn. In the beginning it’s best to be patient with yourself and take it step by step so that you don’t get too overwhelmed which can easily lead to frustration and giving up. If you’d like you can check out my IBD 101 posts which are articles I have written that I consider to be the building blocks to a better understanding of inflammatory bowel disease.
For now I’ll leave you with some of the advice I have for new patients along with advice that the Inflamed & Untamed community shared for new patients over on our Facebook page.
My personal Advice for New Patients
EDUCATION
One of the most important things you can do is educate yourself with accurate, evidence based information about your Crohn’s disease or ulcerative colitis. A good understanding of IBD will help you explain your condition to family, friends, teachers, employers, significant others, or anyone else in your life that you need to disclose your situation to. When you have a chronic illness advocating for yourself is something you will have to do time and time again and a good understanding of your health condition will help you put it into words.
Your “IBD education” can also help you make treatment decisions, have productive conversations with your doctors, and feel more confident and in control than you would otherwise. When you have a chronic illness it’s very easy to feel like you have no control at all but you can take some of
the control into your own hands when you have the right information.
You can begin by asking your GI if they host any patient education events or if they can recommend some good sources of information.
Connect with Other Patients
Making connections with other patients can be very beneficial. These people have gone through similar things and it’s nice to have someone to talk to when no one else in your “real life” can relate to what you’re going through. My life did a 180 when I met other people who have Crohn’s disease. The value of hearing “me too” can be priceless. If you’re not ready to talk just yet it can be helpful to silently observe conversations online.
APPROACH THE INTERNET WITH CAUTION
The internet is a wonderful and scary place when it comes to information about Crohn’s disease and ulcerative colitis. There is A LOT of bad information being put out there by people who act like experts. As a new patient it can be difficult to know what information is correct and what is crazy. Heck, even people who have had IBD for decades are misled by misinformation on the internet. When you’re sick and suffering it’s easy to want to try anything to feel better but beware of what you’re getting into.
Learn about pseudo science and how to spot it, use critical thinking, don’t believe everything you read, and remember that headlines are often sensationalized click bait and you actually need to read the article. Approach the internet with caution and always remember to talk to your GI before you try anything. Don’t let the horror stories scare you and remember that one patient’s experience will not necessarily be yours.
LEARN TO BE A “GOOD PATIENT”
With a life long illness it becomes very easy to want to stop taking your medications, especially if you’re feeling well. It’s also easy to skip appointments, ignore symptoms, and wait until you’re doing very poorly before you do anything about it. Being a patient is hard work – it is a lifetime of filling out paperwork, making phone calls, taking medication, trying to get insurance to cover your treatment (or trying to get insurance period), communicating with clinicians, having uncomfortable procedures, and on and on and on. Unfortunately ignoring things doesn’t make them disappear and I speak from experience because I’ve tried that more times than I care to admit here.
Being a “good patient” is important in order to avoid complications, surgeries, and hospitalizations later on. One of the first things you’ll learn about IBD is just how destructive chronic inflammation can be to the digestive tract. With IBD the things you want to avoid like surgery, fibrostenosis, perianal disease, etc all stem from chronic inflammation so you and your GI need to do what you can to control that inflammation and you have to be a good patient in order to monitor it properly.
LEARN TO ADVOCATE FOR YOURSELF
Every patient is going to encounter a time where they will need to advocate for themselves. This may be at school if you are a young person who needs accommodations or it may even occur with a member of your medical team who isn’t giving you the appropriate care you need. When you have IBD there are many situations that come up where you will need this skill. Knowing how to advocate for yourself effectively circles back to education because without educating yourself you can’t advocate for yourself very well.
Advice From Other Patients
Advice for new patients from established patients that was given on the Inflamed & Untamed Facebook page
Remember that I am here for you guys and if you need any help finding information, support groups, or anything else that I’m only an email away!
Sara
