Advocating for Yourself with IBD

taking notes on how to advocate for yourself with ibd

How to advocate for yourself with IBD

It can be unsettling to discover you have IBD. As a lifelong disease, you will have to make daily adjustments to cope with symptoms and stay healthy. But knowing how to do so will empower you to manage your condition and live a full, quality life.

Growing your knowledge of IBD, finding the right care to support you, and ultimately, learning to advocate for yourself (and your condition) is the best way to take back control. Only by understanding Crohn’s disease and ulcerative colitis can you effectively achieve remission.

Here we share how to become an IBD expert and take charge of your health, your way.

4 ways to advocate for yourself with IBD

IBD, or Inflammatory Bowel Disease, refers to a group of chronic conditions that cause inflammation in the intestinal tract. This causes uncomfortable and sometimes painful symptoms such as diarrhea, cramping, bloating, and constipation. 

Being diagnosed with IBD can feel scary and overwhelming, and while there are challenges to face, with the right treatment and support you can get back to normal life. The first step is learning to advocate for yourself.

Do your research

The best way to manage your IBD is to understand it. Learning everything there is to know will help you to feel in control and improve your mental health. 

Start by finding out about the causes of IBD, what’s best to eat and how to reach remission. There is a wealth of information online so make sure to seek our expert articles from the likes of the Crohn’s and Colitis Foundation of America and our blog here at Crohn’s and Colitis Dietitians.

It’s also helpful to keep up to date with new research. Studies into the impacts of and treatments for IBD are ongoing, with various clinical trials into everything from sleep quality to new medications. Head to the Crohn’s and Colitis Foundation to learn more.

Find the right support 

Enlisting the help of medical experts is crucial to effectively managing life with IBD. You need a group of partners who care for your recovery and can provide tailored guidance every step of the way.

This includes your primary doctor who will be with you throughout your journey and be able to refer you to specialists such as psychologists and dietitians. Each can help with the emotional and physical effects of IBD. We each live with IBD here at Crohn’s and Colitis Dietitians, so are fully empathetic to the challenges you face every day.

It’s equally important to seek support from others with IBD who can relate to your struggles and experiences. Speaking about your condition will help you to feel less isolated and alone. You can also share this guide with your friends and family to help them understand how to best support you.

There are over 300 support groups in the USA as well as hundreds of blogs and social media groups sharing advice and words of comfort – find out more at Crohn’s and Colitis Foundation of America. You can also ask your doctor about groups or mentor programs at your hospital, and especially good resource when facing difficult decisions such as surgery.

Keep detailed notes

Everyone with IBD will have varying experiences, from their flare-ups and triggers to effective treatments. It will help to progress your recovery by keeping track of these areas over time.

Stay organized with a notebook or folder of information that you and your medical team can refer back to. We suggest having different sections for medications, diet, symptoms (and anything you think caused them), appointments, and any other issues you want to discuss such as your mental health. Looking back on this data can help you to spot patterns or remember concerns that you want to discuss with your specialist.

Write down anything that seems important – you never know what may help in the future. Keep note of plans made during appointments, the research you find, and any changes you make to your lifestyle.

There are also a number of apps that can help you to manage your IBD by inputting everything from flares to bowel movements. These include My IBD Care and MyCrohnsAndColitisTeam.

Trust your gut

There’s no one-size-fits-all treatment for IBD, therefore not all options will be the right one for you. Make sure to be proactive, ask questions, and decide on treatments that you’re comfortable with. This includes asking about issues tied to the impacts of your condition including relationships, self-confidence, and body image. 

If you feel like you’re not getting the support you need, don’t be afraid to speak up. It’s perfectly acceptable to ask for a second opinion or to be referred to a specialist. Having an active approach to your care means you’ll get the best outcome for yourself.

It’s best to put agreed treatments and appointments into an actionable plan that encompasses your short and long-term goals, whether it be to reduce flare-ups or manage IBD-related anxiety. 

And remember, if you’re nervous about remembering information or opening up during appointments, ask a friend or family member to attend with you. They can help to take notes or advocate for your needs.

Get help with your IBD today

Having IBD isn’t easy, but there are plenty of resources and support out there that can help to improve your quality of life.

Here at Crohn’s and Colitis Dietitians, we understand first-hand what it means to live with IBD. Our team of licensed gut specialists have each been diagnosed with the disease – and now help hundreds of people find relief through evidence-based nutrition plans.

Get in touch with us today and let’s start your journey to symptom remission.

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