Colonoscopies are not fun to prepare for but they are critical in understanding what is going on inside the colon. For those of us living with IBD it is important to adhere to routine colonoscopy screening to monitor inflammation levels via biopsies. The biopsies that are analyze by pathology. The biopsy results determine how active or inactive our IBD is along with picking up on other possible abnormalities of the cells. Colonoscopies in IBD patients are also important because of our increased risk for colon cancer which colonoscopies screen for and the biopsy results report out on. Even if our clinical symptoms are under control, inflammation can still be present, thus explaining the importance of taking a look inside to see what is going on at the cellular level. For non-IBD patients colonoscopies are important for ruling out IBD, screening for colon cancer, finding and removing polyps and uncovering a slew of other conditions that impact the large intestine. I know the prep isn't fun and I personally dread it very much, but colonoscopies can provide pertinent information.
I feel so honored to have my story on the Crohn's Fitness Food Podcast. Stephanie is a Crohn's warrior dedicated to raising IBD awareness, sharing IBD stories, and offering support for those with Crohn’s & Colitis. Our stories are different but we have the same mission on our minds. Sharing my story is liberating and I hope that by sharing I can help others feel less alone.
If you have been following me on Instagram for a while you might have heard me say, "preparation is key," a few times. I repeat myself because it really makes a difference in my life. I feel less anxious when I am prepared and less anxiety usually correlated to less symptoms.
I like to be prepared for everything. Sometimes that leaves me feeling more rigid than I would like but when living with IBD I think it is pretty natural to feel the need to prepare.
Some of the things I do to prepare myself:
I have always loved food. As a child I ate everything under the sun and my parents have countless pictures of me with food all over my face to prove it. What is wild is that I can go from craving all my favorite foods to being completely terrified to put any food into my body. This switch can happen in seconds and I call it food fear. This food fear I am trying to describe can turn my appetite upside down and inside out. I can go from super hungry to nauseated and from super excited to paralyzing anxious.
I experience food fear in a few different ways:
Association: If I get sick following the consumption of a certain food or meal I tend to associate sickness with that food. This breeds a sense of fear and anxiety that can be very powerful. When severe enough it can get to the point that I will not eat a certain food ever again or at least for a very long time. I am still struggling to find the courage to eat at one of my favorite Thai restaurants for I am still traumatized from becoming violently ill following my last meal there. I am not sure I will recover from that one. As crazy as it sounds sometimes just the thought of eating a food that has made me feel ill can make me feel anxious. When so many foods have caused you a problem it can make your "safe" list a bit too short and it takes a lot of work to heal from the associated trauma.
Public vs Private Food Consumption: Sometimes I am not necessarily afraid to eat a certain food entirely but I am afraid to eat it in public. I get really nervous trying new foods or foods I haven't had in while if I am in public. Sometimes the fear can ruin all the fun. Nobody ever wants to be sick. But let's be honest, being sick in public is significantly worse and can leave you with invisible scars. I have to tell myself I will be just fine in order to enjoy a meal out of the house, especially something new. Sometimes I am not willing to take any chances at ruining a good time so I don't eat or eat less or mostly at home. This can be really challenging when traveling. It takes a lot of mental dialogue and positive talk to help me through eating in public and trying new things while out and about. If I am in the comfort of my own home I am significantly less anxious and pretty brave when it comes to trying new foods and this can even lead to overeating.
"Good vs Bad Food": If you are like me and have been researching everything under the sun in an effort to have a better belly. When researching anything gut related it is so common to come across information about diet and what is "good" or "bad" for the gut.
First of all I would like to work on breaking myself of using these words to describe food because they can create disordered thoughts and eating. As someone that has struggled with my relationship with food and my body image for more than half of my life I am trying to be cognizant of how I address food in general.
Aside from my history with food, as an IBD and IBS warrior I find that there is a serious mental component. What I think will happen really impacts what I actually experience. If I get myself all worked up about eating what everyone is saying is a "bad" food or worse something I have convinced myself is a "bad" food, I am going to naturally feel remorse for eating it and possibly even experience some GI discomfort. The symptoms are not necessarily from the food itself but from the anxiety and fear. This might sound crazy but I promise you this is real and I know I can't be the only one that deals with this. Anyone relate?
Generalized Food Fear: Food fear comes in all shapes and sizes. Just like we all experience IBD and IBS differently, food fear isn't any different. My food fear comes and goes. Sometimes I am not scared to eat at all and other times I get really nervous.
Overcoming food fear:
I wish I had a magical answer that took all food fear away, but I don't. I still struggle with it myself. What has helped me the most has been trying foods at home in a relaxed environment and working on positive self talk. I feel like I miss out on a lot of experiences especially dining out over my food fear that really became bad last year. I remind myself that there is a restroom just in case I need it. I tell myself I will be fine and that it is just food. I give myself a pep talk literally. I try to breathe deeply to reduce stress and anxiety. I try to focus my attention on something else. What am I going to wear, what is something I am excited about and use those positive thoughts as a distraction from the food fear. I also try to acknowledge that the food could be an innocent bystander to stress or other causes for feeling ill. Trying not to blame the food unless it is obvious, a repeat offender or simply horrific. I can do all of these things and still be too scared to eat but I am working on it. This is a journey so be kind to yourself along the way. Celebrate the victories not matter how small. Love yourself and your body for what it can do for you. Take care of your mind as it plays a huge part in our relationship with food and our mental health. Send me a DM if you have questions!
I am so thankful I was brave enough to start sharing my health journey with the world. Sharing has helped me grow as a person and has been far more rewarding than I could have ever imagined. Connecting with other people who simply get what I am going through or who have been through something similar is powerful. I genuinely love listening to other people's stories and learning
I feel empowered when I share and helping others is my true calling. Sharing my journey more openly with my close friends has strengthened our relationships and helped us all grow and become better people.
I am so glad I started going to an in person support group and even more proud that I am now a co-moderator. I am trying to grow our support group so that more IBD warriors can feel supported. Every new face I see is a step in the right direction. The stronger our community and the more comfortable we get in talking about our journeys the more we can help one another. I always leave support group feeling empowered. Empowered I was brave enough to show up to a support group by myself and talk about a very embarrassing disease with strangers. I am proud I now lead this group and am able to make folks feel comfortable sharing. When someone who never speaks at group starts sharing, smiling and laughing, my heart just about explodes. There is so much power in community. Find the community you feel best with. Share your journey, lift others up when they are down and let them support you when you need it most!
For more information on the Atlanta Crohn's & Colitis support group send me an email or direct message on Instagram.
It felt so good to get back to therapy today! My psychologist took the summer off so today was my first day back with her in several months! Wow!! It felt so good to get back to digging inward and personal growth! Since my appointment this morning I have been reflecting and taking mental notes of all the things I want to work through and learn about that only have to do with...ME! Who I am. Who I want to be and how to be the best version of myself!
If you don’t work with a mental health professional that is alright! Just know that when you are ready don’t be scared. Don't let what other people might think or say keep you from doing what is best for your health.
There can be a great deal of stigma around seeking therapy but I want to change that and thus why I share! I find therapy to be one of the most important and most rewarding things I have done for myself! I have seen myself change and become a better version of myself! It’s pretty darn magical when you think about it! I find it especially critical to find a therapist you like and trust if you are living with a chronic illness. My current psychologist has helped me morn the loss of my "normal" body and to accept my chronic condition. These are not easy things to tackle. I lived with IBD for 5 years before I met her and began to really understand the importance of accepting my "new normal" and reality. This important work can be painful and challenging but so very rewarding.
If you are curious about counseling/therapy, give it a try! You might have to shop around to find the right practitioner for you but that is like everything in life: doctors, dating, homes, jobs...you get the idea! Let’s take care of our 🧠’s like we take care of our bodies! 🧠
The Crohn's & Colitis Foundation asked me a few questions about my experience talking to my legislature about the needs of IBD patients and step therapy reform. Here is our Q + A! I highly recommend getting involved. Send me a DM on Instagram if you need encouragement or have questions!
Q: How did the scheduling process go?
A: The scheduling process was simple. I didn’t expect to receive anything beyond an automated email reply much less a personal email and sit down meeting. I was shocked. The Senator’s staff assistant emailed me to set up the day/time of my meeting with the Chief of Staff. This process didn’t take long at all. The staff assistant was polite and professional. When I asked for the location details I was provided with a comprehensive explanation of how to find the office which worked out perfectly on the day of my meeting.
Q: Were the materials provided helpful/what other resources from the foundation did you use?
A: The materials provided by the Crohn’s & Colitis Foundation were instrumental in preparing for my legislative meeting. The foundations infographics and educational handouts helped me gain the confidence I needed to speak to step therapy reform and greater healthcare needs for IBD patients. I browsed several pages of the Crohn’s & Colitis Foundations website prior to my meeting, all of which was helpful and well organized. I talked to other IBD warriors on my social media platform and in my community to gain their insight on what they feel needs to be brought to the legislatures attention. From there I narrowed down talking points with the Crohn’s & Colitis Foundations Education Director a few days prior to my meeting. Having the support from the foundation propelled my excitement to another level, while helping to make my first legislative meeting a success.
Q: How was the meeting?
A: The meeting was totally awesome! To be completely transparent, I was initially extremely nervous and questioned my qualifications for calling this meeting in the first place. Then I remembered, there is no credential more powerful than experience. As an IBD warrior that is what I brought to the table. After the initial introductions we got into the groove of flowing conversation. I began to really enjoy the opportunity to share my story and represent the millions of American’s fighting IBD. I was able to connect with the Chief of Staff and appeal to some of the issues that actually face the senator himself. Making a personal connection really does matter and I was proud to have found a way to do that. We asked that the senator support step therapy reform so that insurance companies cannot tell patients and providers what medications they have to fail before they can take the right medicine for their disease. I asked for research funding to continue so scientists and doctors can discover a cure. I spoke to the rising cost of pharmaceuticals and the toll that takes on those of us living with a chronic illness.
The Chief of Staff said that he would bring the information we presented to the senator for his review and will inform him of our conversation.
Q: How did you feel afterwards and would you recommend other volunteers do the same?
A: My first legislative advocacy meeting left me feeling empowered. I felt stronger, smarter and powerful. I could not be more proud in the moments following this meeting. I kept thinking to myself, “wow I did it. I stood up for myself and the 3.1 million American’s living with IBD.” I continued to smile the entire drive home. I was so excited to tell my Instagram community along with my close friends and loved ones. Standing up for what I believe in and advocating for Crohn’s & Colitis patients across the nation filled my heart with joy. This experience inspired me to continue to stand up for what I know IBD warriors need and to not stop telling my story and the story of others. I want to see improvement in the healthcare system, I cannot sit on the sideline and wait for change to come, I must be the change I want to see.
I highly recommend setting up legislative meetings, advocating and storytelling. Every IBD fighters story is different, we all bring something unique to the table. If we can all share, together we can make a difference in the lives of others.
Moving my body is just as beneficial as some of my medicines. I find moving helps every aspect of my being from my mental and spiritual health to my physical body inside and out. I schedule movement into my day by signing up for classes ahead of time and by wearing my Fitbit which helps remind me to get out of my office chair to move. I feel so much better when I get moving. I do listen to my body the best I can so when I am feeling unwell I gage whether or not it is best to take a class, walk, stretch or rest. On days I don't feel great I still try to get moving. Many times I feel significantly better once I have exercised and released endorphins!
If I am in an extremely tough flare my body needs more rest then movement. Stretching and walking is great but with the loss of so much liquid and blood I make sure I don't overdo myself. Plus bad flares can leave me with barely enough energy to get from the couch to the toilet and back. Listen to your body folks. It speaks to us every day!
Living with an invisible illness has pro's and con's. The great part is that on the outside you look normal and even healthy at times. Many times there are no physical indications on the exterior that would give anyone the idea that you are battling a chronic disease. I am very thankful I look "normal!" However, out of sight out of mind can be a real thing. People are not always understanding of what a person is going through if they can't literally see what is wrong with you. If I had crutches or was in a wheel chair people might let me cut line or help me in ways they don't as I look the way I do. Don't get me wrong I am so thankful I look the way I do and that my body serves me the way it does. I am thankful for so much. But people can't see my guts. They can't see my anxiety. They can't see the pain or the urgency and the fear.
This is where compassion comes in. I am beyond compassionate and I don't need to see someone is visibly ill for me to be compassionate towards them. IBD had taught me this.
Most people don't have compassion for something they can't see in front of them. They are not quick to ask if you need to use the restroom first. They aren't quick to lend a hand or understand if you need to cancel plans last minute. Unless of course you are battling something yourself and you have grown to be a compassionate person. IBD has taught me so much and one lesson I have learned is to be more compassionate and remind myself that I have NO IDEA what others are going through. Real talk though. We do not have any clue what someone else is battling so we must be compassionate towards one another including ourselves.
My advice for living life with an invisible illness is build a support group that is compassionate and caring. Surround yourself with people who are understanding and let the ones that aren't go. Advocate for yourself and stand up for what you need. Be kind to others and to yourself. We have to give ourselves some slack. It isn't easy being different or feeling burdensome to others.
Love yourself and your tribe and don't stop fighting for what you need for your body and health. Nobody else can speak to how your feel like you can so fight like hell!