RARE BUT WORTHY: MY BATTLE WITH SUPERIOR MESENTERIC ARTERY SYNDROME AND AN EATING DISORDER
Written by Teryn Brodish (she/her)
I am sharing my story as a woman, a student, an athlete, and an advocate for mental health and Project HEAL’s mission. As someone who has dealt with several different chronic illnesses, I understand the hardship of trying to function in daily life while healing from an eating disorder.
I remember waking up from the surgery. I had five laparoscopic scars. Simple little lines that will fade with time. The meaning they hold in my heart is far greater than their presence on my skin. I fought what felt like a never ending battle, and I survived. I will have that meaning forever.
I struggled with an eating disorder for years. It was rooted in a fear of food and fear of my body due to a debilitating medical disorder I did not know I had. Often when I ate, I experienced pain that was chronic and kept worsening throughout my early twenties. Soon, the pain became constant and sharp. It was accompanied by severe abdominal bloating and swelling. It would last for hours. I used to describe it as “someone wringing out my organs like a wet towel.” I was told by many physicians that I had IBS, a gluten allergy, dysmenorrhea, food anxiety, thyroid issues, and stomach ulcers. No matter what treatments or medications I tried, my symptoms never improved. I felt like I had tried everything (which I truly had) and I was hopeless. This journey triggered forms of orthorexia and anorexia.
I was deep in disordered eating and had to find ways to pull myself out. I thought it was my fault. I thought the chronic pain and my body’s reaction to food was my doing. Food did not feel good in my body and that was my reality. I found it hard to trust my body. I was afraid of food.
I was in the emergency room and urgent care multiple times. I was given strong pain medication to help me get through the day, but it never truly eased the pain I’d get after eating.
This past January, about three years deep into chronic pain, I was diagnosed with Superior Mesenteric Artery Syndrome (SMAS). This is a very rare vascular compression disorder that causes small intestine obstruction via compression of the third part of the duodenum by the superior mesenteric artery. This is due to the loss of the mesenteric fat pad (a collection of fat that protects hard arteries from squeezing soft intestines). My fat pad was gone and the angle between my artery and duodenum was dangerously small, making it incredibly hard and incredibly painful for me to digest food.
My doctors explained to me that Superior Mesenteric Artery Syndrome was common in young people who had struggled with eating disorders because this condition makes it nearly impossible to digest food normally and elicits a fear of food in those who have it. SMAS can also be amplified or triggered by EDs due to long-term restriction resulting in too much internal fat loss (a reminder that we have fat for a good reason). The mesenteric fat pad seldom comes back once it is gone, and mine did not come back. It was something I needed surgery to fix if I didn’t want to be in debilitating pain every time I ate.
At this point, my pain was continuous. It was taking over my life. I would bawl in pain under my heating pad. I did not have a social life; I was resentful, angry, and sad. I felt like a shell of myself, and I was incredibly sick. My body was in constant pain and on top of that, I was trying to battle disordered eating behaviors. Until I met with my GI and surgeon in January, seldom did any medical professional ask about my eating disorder or how the eating disorder may have impacted my body’s ability to function.
This is so vital for us to all understand: just because an eating disorder is technically a psychological disorder or mental illness does not mean the body does not undergo physical ramifications from improper nutrition, debilitating anxiety, and other disordered behaviors that lead to hormone irregularities and loss of internal organ protection.
Doctors told me that I was so “young and healthy”, and they were confused about the source of my pain. They were right in a sense. I’m an avid runner and biker; I was in my early twenties with a degree and working full time with no previous medical history and normal blood work.
However, it’s frustrating when the medical community makes assumptions regarding your health based on age and how you appear on the outside and on paper. At the end of the day, I was not healthy even if that is how I appeared. When my surgeon performed the procedure to reroute my small intestine, he had to remove my gallbladder and scar tissue from my GI tract as well. The surgical team claimed my gallbladder was “disfigured and swollen” and covered in scar tissue as was my large intestine. So, in addition to SMAS, I was experiencing repeated gallbladder attacks. My surgeon told me the scar tissue could’ve been there for years and triggered my initial pain and discomfort around food and may have been a huge contributing factor in my SMAS and ED development. Without the amazing help and explanation of my surgeon and GI physician, I would’ve never known what was going on inside of me and why.
Let me serve as living and breathing proof that you should never give up if you feel that something is not right in your body or mind. Never stop advocating for yourself, and never feel upset after explaining yourself and not getting the response you wanted. Don’t feel ashamed for asking vital questions about your own bodily autonomy and not getting thoughtful answers.
This goes for medical conditions and mental illness as well. If you feel your ED affected or is affecting your biological bodily functions, tell your doctor and if they don’t help you, firmly ask them to refer you to someone who can. If they give you advice to engage in a behavior that is triggering for your ED, firmly say that treatment method is not an option for you. If they give you any backlash, please find a new doctor that is more accepting; I promise they exist!
No matter what you are trying to tackle right now, you deserve to feel safe and comfortable in your own body at the very least. Whether that requires medical doctors, psychiatrists, therapists, or a community of like-minded people, you deserve it. If you don’t know where to start, being here with Project HEAL is a wonderful first step. I also want to raise awareness for rare disorders and diseases similar to SMAS. These diagnoses can be elusive yet life-changing. It takes a while to find the right medical professional who understands them. It also takes time to understand how to care for yourself when you have a debilitating condition. I am just a few weeks out from a surgery that bypassed part of my small intestine. Learning to function, eat, work, and move my body again feels like being a newborn baby, and it’s trickier than I thought, but I’m ready for this path in healing. I’ve waited for so long.
My eating disorder took a lot from me. It did permanent damage that I can’t undo. I’ve accepted that. Superior Mesenteric Artery Syndrome also took a lot from me and carried permanency. I’ve also accepted that because I am here, alive, and supported. I can live my life in significantly less pain. I can finally heal my relationship with exercise and food. I can focus on my dreams and my new path ahead now that I have the brain space and energy to do so. And I know my body did everything it could to protect me throughout this entire journey. I’m working on being more grateful to her for that. Bodies and brains are so resilient.
Today, your body is doing the absolute best it can to keep you alive. That is worth celebrating. There is a light at the end of the tunnel. If you don’t see it yet, remember that you are still worth fighting for. Your pain, fear, and vulnerability are always valid.