A Few Things I Learned from Advances in Inflammatory Bowel Diseases (AIBD) 2024 As a Patient
By Maria Rouse from NC, USA
Disclaimer: This piece is not intended to serve as medical advice, but as a reflection on strategies for patient advocacy. Always talk to your GI provider before making any changes to your diet, medication regimen, or any other aspects of your health care.
I recently had the amazing opportunity to attend the annual Advances in Inflammatory Bowel Diseases (AIBD) conference in Orlando with CCYAN. Living with ulcerative colitis for 15 years now, I thought that my personal realizations about living with it might be fairly limited moving forward. AIBD helped me realize the power of knowledge and community support in developing new insights about my disease journey and what I hope for my future. Whether this information helps inform your self-advocacy for you or your loved one’s care, or simply is empowering to know as you progress on your IBD journey, I hope that sharing what I learned from AIBD as a patient provides you with another tool in your toolbox for managing the complexities of living with IBD:
#1 Do not assume your voice is automatically less important than your provider’s. The patient-provider relationship should be a partnership. Advocate for your needs the best you can as the best expert on your body.
Do not be afraid to share with your provider if you feel that you are not doing well on a medication they have prescribed you, whether it be because of recurrent symptoms, side effects, or another factor. Your experience matters.
You may have already encountered this reality during your IBD disease journey, but it may be helpful, as it was for me, to hear it concretely said: the way you feel might not always be indicative of your disease activity or whether you are truly in remission. It is possible for you to be feeling well but have your labs and other biological markers show that your disease is active.
This does not mean you shouldn’t trust your own intuition, but that our bodies are complex. As frustrating as this reality is, our providers can help us uncover when things are not going as well as we perceive.
#2 It is important to be aware that IBD can sometimes affect more than your gastrointestinal system.
If you feel that your IBD may be connected to health issues occurring in other parts of your body like your eyes, joints, or skin for example, do not be afraid to share these concerns with your provider even if they do not specifically ask about them. While it can sometimes be difficult to tell if other health issues are related to your IBD, if they are, there may be treatment alternatives that can help address these issues in addition to your IBD.
While everyone’s IBD is different and one person’s experience doesn’t represent everyone’s, I have found it enlightening and often comforting to talk to other people with IBD about less commonly discussed symptoms (e.g., problems with hunger, mobility, and skin issues) I have experienced, to know I am not alone. It has helped me feel more comfortable proactively bringing up such topics with my provider to both ensure my disease is under control and identify ways to potentially alleviate symptoms and improve my daily quality of life.
#3 Managing your diet and nutrition can sometimes feel like the bane of your existence, but they can be key supportive elements for managing your IBD.
In my opinion, IBD dietary and nutrition advice can feel overwhelming and frustrating, because it’s impossible to identify dietary guidelines that work for everyone with IBD. While diet and nutrition are typically supportive components of an overall treatment approach, they are still important elements for overall health and wellness.
Do your best to follow guidelines from your provider and nutritionist, if you have one, and listen to your body’s needs. At the same time, however, do not stress too much if you don’t get it just right, or it takes a while. It’s a journey, and sometimes our needs can evolve over time.
#4 If you identify as a woman or as gender non-conforming, the field has a long way to go with prioritizing research and care at the intersection of IBD and reproductive health.
There is a lot of unclear or flat-out misinformation out there, and providers do not always bring up issues such as painful menstruation, fertility concerns, or sexual functioning issues that can be associated with IBD. Do not be afraid to bring up any concerns or questions you have with your provider, whether that be your GI provider or your reproductive health care provider.
There is a lot of emphasis on research and care related to pregnancy and IBD, which, while important, does not represent the whole spectrum of needed reproductive care for people with IBD.
Some examples of topics that we need to advocate for further attention towards as patients include exploration of potential connections between IBD and endometriosis, management of painful periods, and clearer guidelines on safe and effective contraceptive use.