A Young Woman Learning How to Live With Rumination Syndrome

Growing up, I guess you could say I was living my childhood dream. I was very close with my mother, was well liked by my peers, and did pretty decent in school. I spent a lot of time burning energy by hiking, martial arts, dance… anything active. I appeared to be a normal, healthy, strong young lady. The only thing my parents took note of was that I had a weaker stomach than most people. As a baby my family would go on road trips and I would be crying the whole trip. Eventually after multiple times of me vomiting in the car, my mom assumed that I was crying because I was car sick. As I got older and I was still vomiting quite frequently, my mom assumed that I was being too active too soon after meals. She just told me to wait awhile before I ran around and didn’t think too much more of it. We could have never predicted that these were early signs of a potentially life-threatening disease that I would be dealing with the rest of my life. 

At 15, while on vacation for Mothers Day, we noticed that maybe this was actually something abnormal.. After having a wonderful dinner a few blocks away from our hotel, we started to walk back. Engaging in conversation, we came to a crosswalk, and as my mom was talking, I put my hand out gesturing to hold on. I turned around and a large amount of food came up. My mom and I looked at each other confused. I had not experienced any nausea, no gagging, and I didn’t feel ill. These pauses happened frequently until we got back to the hotel. When it finally came to a stop was just expelling liquids, and was otherwise kind of hungry again.  

This problem continued for months and it was obvious that whatever was happening was getting rapidly worse by the day. By the time I finally went to the emergency room, I had lost nearly 10lbs (originally I stayed around 98lbs at 5’3), and was now unable to hold down anything, including fluids. I was severely dehydrated and lightheaded constantly, but what was really killing me was the unquenchable hunger I had been experiencing during these months. I literally felt like I was starving to death. 

Over the next 3 years, I was hospitalized and referred in every direction, from pediatric gastroenterologists to psychiatrists. I even tried seeing holistic doctors, but had no results. I continued to lose weight and deteriorate. I remember telling my pediatrician one visit,

“I don’t care if the problem is medical or psychological, please just help me fix it!”

I was becoming severely ill, extremely depressed, and knew I was dying. I was put on numerous medications, feeding tubes, IVS, and spent the majority of my high school years in and out of hospitals, all without a diagnosis. Now at less than 80 lbs my mother and I had accepted the possibility that I might not be alive to graduate. We started to give up on finding a cure.

As the next few years went on, I did the best I could to live a normal life. My friends were used to my situation and adapted to my odd response to meals. Over time I learned little tricks that seemed to help my involuntary need to expel anything I consumed. For example, I learned that the only thing that I could drink that would not cause me discomfort was carbonated beverages. I also started to self medicate. I was home schooled at this point, because I wasn’t just hungry; I looked terrible. My hair was falling out, my eyesight was going, and I blacked out nearly every time I stood up. I started using drugs in hopes that it would take the edge off the hunger pains and maybe give me some extra energy so I could hang out with my friends without fainting and ruining everyone’s time. The drugs helped me with that, and even physically I started looking healthier. My weight started to stabilize, and my skin had more color… as strange as it sounds, the doctors later told me that the drugs were probably helping my body absorb what little nutrients I was consuming at a much faster rate, basically helping speeding up my metabolism enough to maintain my weight.

Of course, we knew that this was not fixing my issue, but it at least eased the pain and allowed me to live a bit more comfortably, at least temporarily. At this stage in my life, all I was looking for was something temporary because I was under the assumption that I wouldn’t be alive much longer anyway. 

Fast forwarding past the legal issues that concluded my illegal use of controlled substances as my medication, I found myself at the age of 20 and right back to where I started with my medical condition. I was off drugs now, but my health seemed to plummet even quicker this time around. I decided that I would try again to see another specialist. I was now no longer a minor and that opened up a lot of options on where I could seek the best medical help.

I wound up seeing a specialist at USC, where I found myself re-taking a lot of the same tests. Three times a week I received intravenous nutrition and hydration. After about 6 months of seeing the same doctor and running every lab and test he could think of, I was diagnosed with rumination syndrome. But was then told that this was a field he did not specialize in and otherwise knew nothing about. This was the most hopeless I had felt in my life at this point; after finally knowing what my disease was, I learned that there was no treatment.

I am now 30 years old and have been living with this illness for 15 years, on again off again using drugs to slow down the deterioration of my health. Unfortunately this caused me emotional issues as well as legal issues, ending in several incarcerations. Meanwhile my health and weight still going up and down. I find myself an average 90-95 lbs, still living off diet coke; I’m in amazement that my body hadn’t hasn’t given up on me yet.

I wish I could conclude my story with a happy ending, but the truth is, I found this website because I am still looking for answers and wondering who else out there is suffering from these issues and if they are as lost and confused by this situation as I am.

It is incredible how many more studies and research has been done involving this underdiagnosed disease since I first started living with this disease. It is such a great thing that people are coming out about the issues they are experiencing and allowing the doctors more education on the subject. Eventually, they will hopefully find a way to treat rumination syndrome effectively. Every time I read a new article and realize that I am not the only person going through this, it gives me hope that I will eventually live a normal, healthy life someday.

One positive thing that has come out of this experience is that I can honestly say that the body is a miraculous creation, and shockingly, extremely adaptable. Here I stand, getting stronger somehow each day and adapting to the unimaginable. Let’s put it this way: if our world ever suffered through an event where our water supply ran dry, I can almost guarantee that I will outlive 98 percent of the human population because it feels like my body has somehow figured out another way to stay alive without the need of water. Maybe I’m an alien, maybe I’m a walking miracle; or just maybe the human body is underestimated and can withstand much more than we could ever imagine.

Thanks for allowing me to share my story. 

 

Amanda

Amanda

My name is Amanda, and I'm 30 years old, which Is kind of incredible considering when i was 16 i was told I would be lucky to live to see graduation. I have been battling a disease called rumination syndrome. This disease that took my dream childhood, and turned it into a battle for my life. My high school years were lost do to hospitalizations, severe depression, and hopelessness and anger.. this eventually lead to off and on drug use, legal issues, and a begging for this disease to just finish me off.. 15 years later, I am still alive and I want to share my story with anyone who wants to know, especially anyone else out there dealing with a similar story.

Share this post

Share on facebook
Share on google
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email