5 Essential Tips for Newly Diagnosed Patients.
Last updated: December 2021
Finding out you have a chronic illness comes with a lot of feelings; from the moment you are diagnosed with Crohn’s disease, your world forever changes. In the past you may have identified yourself by various roles in your life such as son, daughter, parent, student, employee, spouse, softball player, AstroTurf lover, and so on.
Now you have to add Crohn’s disease patient to the list and perhaps you don’t even know what that means for yourself and your future. Don’t worry, I’m here to help!
Today I hope to make things a little easier on you by sharing my best advice for new patients that I’ve learned from being a long-time Crohn’s disease patient myself (I was diagnosed when I was a child), and from leading a community both online and out in the real world as a patient advocate and educator.
A new diagnosis comes with so many emotions
At the time of diagnosis, it isn’t uncommon for a new patient to experience depression, anxiety about their new diagnosis and what it will mean for them, and depending on the severity of disease at the time of diagnosis, the patient may even be feeling a loss of identity as if they are missing their “old self” or “old life.”
If you are feeling similar to this know that you are not in the minority and that most patients with Crohn’s disease have felt this way at some point. There is help available and I promise to point you in the direction of some useful resources below.
So now that you know that you have Crohn’s disease, you probably want to know how it’s going to affect your life and how you can manage it so that you can get back to feeling well. Below are my 5 essential tips for newly diagnosed patients.
5 essential tips for newly diagnosed Crohn’s patients:
1. Approach the internet with caution:
The internet can be both wonderful and helpful but also damaging and scary to a new patient. There is so much information available online but how do you decipher which information is correct, especially when you’re a new patient?
One patient seems to be telling you one diet to follow and the next will say that you should follow another, and the next will tell you that diet doesn’t matter at all.
There are people claiming certain products or supplements cured them and there are well-meaning patients giving out bad advice and misinformation. There also seems to be a lot of "horror stories" floating around that may frighten a patient from seeking necessary medical treatment.
Some of the best advice I can offer to a new patient is to not take most of the internet seriously when it comes to Crohn's disease. There is a lot of good information out there but you have to know how to find it, which brings me to my next tip...
2. Learn as much as you can about Crohn's disease:
It is extremely important that you understand your illness since it is life-long. Understanding Crohn's disease will help you take a more active role in your health care, help you make decisions about your treatment, help you advocate for yourself at work, school, or to your friends and family, and more.
It is important that you learn well- this means that you learn from credible sources that provide accurate information. If all the information you are learning is wrong that could send you in a lot of bad directions. To find good information the first place to start is with your doctor.
Ask your GI if they provide educational resources for their patients or if they can point you in the direction of sources they would recommend. Some health centers even host patient education nights. Since it's difficult at first to figure out how to find good information, I wanted to start you out with some of my favorite resources for new patients:
- The CCFA's Newly Diagnosed Kit.
- American College of Gastroenterology's Patient Education & Resource Center.
- IBD School by The University of Michigan's IBD Center.
- You and IBD Video Series.
- Inflammatory Bowel Disease Video Playlist from The Mayo Clinic.
- About IBD.
Searching PubMed is usually a safe bet for good information along with using MedNexus, a medical search engine that has a section on published research.
3. Find a support system:
While the internet can be tricky when it comes to finding good information, it's a beautiful thing when it comes to finding support. There are tons of Facebook support groups and pages, personal blogs, YouTube channels of patients sharing their experiences, patient forums, and even Instagram accounts where patients come together to share their experiences and offer each other support.
Having Crohn's disease can be a very isolating thing and many patients deal with it in silence not able to talk with their loved ones. It's a highly beneficial thing having someone else there to say "me too." Just remember that it's nice to hear patient experiences, but do not use it as medical advice or assume that others' experiences will be the same as yours.
If internet support isn't your thing there are also plenty of patient events offered in-person ranging from traditional support group settings to casual meet-ups and fun athletic events. Here are some to check out: Team Challenge, Take Steps, Girls with Guts Retreats, Get Your Guts in Gear, GBM Gut Together's, and CCFA Support Groups. I even co-founded patient meet-up events called Gut Over Here, You Guys!
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4. Find the right doctor:
The right doctor to treat your Crohn's disease can make all the difference. When I was young, I went many years with an unqualified GI and my health suffered greatly because of it.
When I finally was able to switch to an IBD specialist, I couldn't believe all that I had been missing out on in terms of managing not only my intestinal inflammation but all the other things that can often occur with having IBD like arthritis, malabsorption and malnutrition, iron deficiency anemia, bone loss, and so on. Check out this guide I provided to patients on how to find a good doctor to treat your Crohn's Disease.
5. Become an A+ Patient:
Years of research have shown that the longer active disease goes untreated that the higher the risk of complications becomes. This means if your disease is not being managed properly by controlling intestinal inflammation then you are at higher risk for permanent damage such as fistulas, strictures, bowel perforations, hospitalization, and surgeries.
It's a big change when you go from hardly ever seeing the doctor to being diagnosed with a chronic illness and having to take medications regularly and seeing the doctor often. Being an A+ patient means being compliant by sticking to your treatment plan.
You will need to take your medications consistently, every single day, or whatever the rate they have been prescribed. You will also need to keep all of your doctor's appointments even if you are feeling well. One thing new patients may not realize is that you might be feeling well and not be having symptoms, but there still could be active intestinal inflammation present. Keeping your doctors appointments will help your gastroenterologist monitor those things and keep you feeling well and help prevent serious complications.
A new diagnosis is scary. We're here for you.
I hope that these tips help. When you are first diagnosed it can be a very scary time in your life and no doubt you have been looking for information wanting to understand what this means for you. Though it can be overwhelming it helps to take it one step at a time and I promise as time goes by you won't feel completely lost. There are lots of resources out there that can help you live your best life possible with Crohn's disease.
Are you newly diagnosed or do you have any advice for someone newly diagnosed?
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