- CASE FILE
Suffering for 11 years from severe, undiagnosed digestive disorder that caused me to almost die due to severe weigh loss.
ABOUT THIS CASE FILE
My crazy story begins in August of 2008, at the age of 25. I had a very energetic 20 month old and was a single parent working full time to support both my daughter and myself. I was diagnosed with a benign tumor that was wrapped around my descending aorta and my entire world was flipped upside down. I began radiation treatment in an effort to shrink the tumor from the aorta thus saving me from a potentially large surgery and long recovery. After 2 months of radiation, I was sent for a pet scan and it didn't appear that the tumor had shrunk. My cardio-thoracic surgeon refused to operate on me and I was left with a single option of leaving my now 2 year old and traveling to Baylor Medical Center in Houston, TX to have the tumor removed. This is where my real fight began. I am, at this time, 5'5" and 165lbs.
On December 18, 2008, I had the surgery that would change my life forever. 11 hours long, I was out for more than a day. Pulling the breathing tube out caused my lung to collapse after surgery and that is my first memory coming out of anesthesia. Once put on a liquid food diet, I was unable to hold down food properly. I would have severe diarrhea or vomiting after eating anything. I spent 2 weeks in the hospital having never kept down more than a bite or 2 of actual food without becoming violently ill. I was released after 2 weeks, spent a full week recovering at a family member's home and then flew back to Arizona. During this entire time, eating was still a significant struggle but it was assumed the highly invasive surgery simply took a larger toll on my body and with healing would come an appetite and an ability to hold down food. It didn't.
Within 3 weeks of my return to Arizona and most meals consisting of crackers and gatorade, I was extremely ill. I had a follow up appointment with a cardio-thoracic doctor for my surgery. I was wheeled into his office in a wheel chair, unable to hold up my own body weight from lack of nutrition. He took one look at me, stated my color was almost gray and had me admitted to the hospital immediately. I spent yet another 4 days in the hospital with severe malnutrition, still suffering from constant loose bowel movements or vomiting. They ran multiple tests during my 4 days there and yet everything came back completely normal. I didn't have a bacterial infection, I didn't have a viral infection. They simply had no answers. On my last day, I managed to get a 1/2 banana down and they released me to go home. I had no more answers than the day I arrived.
I would cry almost daily from being so hungry but yet so afraid to eat due to the effects food had. I couldn't hold my child, I couldn't sit and play with her. I couldn't be a mom and I was the only parent she had. I saw the effects my illness was beginning to have on this innocent little girl. I would try to eat and then would spend upwards of 30 mins in the restroom. I could feel my body contracting which made the nausea even worse. Sometimes I would vomit directly after using the restroom. The only way to describe it is having the stomach flu every day of your life.
I began seeing a local gastroenterologist shortly after my hospital stay. He ran multiple tests, including an upper and lower GI. Everything he came up with would come back normal. He never attempted to treat my symptoms but when he couldn't figure out the problem, he began ignoring my phone calls. I would call repeatedly without getting calls back. I ended up showing up to his office without an appointment. I had to demand to see him and demand a referral to the Mayo Clinic for further help. This physician would have let me die than own up to the fact that he simply didn't have an answer. It is now April of 2009 and I am hovering just over 100lbs and can no longer function at my job. I'm now 25 years old and on disability.
I was finally able to see a physician at the Mayo Clinic in May 2009. Dr. Shiff said to me "How has this changed your quality of life?". That was the first time anyone had cared how my life had changed. I was not even 26 years old and I had gone from a vibrant, fun loving individual to disabled and embarrassed to go out. I was almost completely stuck laying in a ball on the couch by this point. I wasn't able to absorb enough nutrition to do more than breathe. If I tried to walk, I was so dizzy I would fall down. I used an office chair to get around my house, especially if I needed to be up for longer than a few seconds. Dr. Shiff chose to start treating my symptoms while also trying to find the root cause. At this time, I was prescribed Asacol (6 capsules), Lomotil (12 per day) and Imodium (16 per day). This cocktail of meds offered me the first chance in several months to be able to eat more than 300-400 calories per day. I was able to sit up for longer than 10 mins. I was able to get around without the use of an office chair. I could visit a grocery store with my mom and my child. But, I was still losing weight. My overall caloric intake wasn't making up for the months of starvation and wasting. And I was still struggling with the diarrhea up to 15 times per day. The only positive is the vomiting had stopped but I was still dealing with severe nausea.
Dr. Shiff ran numerous tests, some of them numerous times. He commented to me that "on paper, other than being a little too thin, you're perfectly healthy." I didn't know what to make of this statement. How could all my tests be normal when there was something so obviously wrong. Well, Dr. Shiff wasn't giving up. He continued to treat my symptoms, hoping my weight loss would stagnate sooner than later. He continues to run test after test, using all the 5 star equipment available to him at Mayo. Everything continues to come back as normal. By October 2009, I am 89lbs and there is now serious talk of a feeding tube. 2 more pounds lost and he would have no choice. I was sent to another GI within Mayo for a second opinion. He insinuated that I was Bulimic or Anorexic and simply doing this for attention. I walked out, informed Dr. Shiff I wouldn't go back and that was the end of that. Dr. Shiff followed up the second opinion with a request for me to see a nutritionist. She was probably a wonderful doctor but due to my severe malnutrition, she was stuck on the idea that I needed to drink things with milk or milk derivatives to supplement my caloric loss. I don't entirely disagree with her, but having been lactose intolerant since birth, drinking anything dairy related just wasn't going to work. She then suggested high caloric juices that you order. I would need to drink 4-6 per day to supplement my caloric loss at a cost of $60 per 30 drinks. I hate to say it but I just laughed at her. I was a single parent trying to make it on $1000 a month disability. There was simply no way I could afford that. So back to Dr. Shiff and the drawing board.
I began just eating one half of a peanut butter sandwich. For one reason or another, it didn't make me ill. I would eat one for each meal and then try some crackers or small snack in between. I dealt with being sick and the constant diarrhea but I knew I just had to force food down. A feeding tube was not an option. It took me 3 months but I managed to gain 3lbs and that was enough of a kick start. 2 years later and I was finally back at 98lbs. My long term disability was denied and so I was required to go back to work. Unfortunately I couldn't. I wasn't ready and Dr. Shiff wouldn't sign off. I was then terminated from my job. I was off for another 6 months before being able to return to work.
I found a job within the Mayo Clinic. This offered me some peace of mind while also working in a field I had interest in.
I felt human again, I may have been very tiny and underweight but I could walk and be around people. I worked with some accommodations but functioned relatively well while still battling whatever was wrong with me. We are now into 2011 and I'm about 100lbs.
For the next several years, my life goes on. I'm no longer taking the Asacol and stopped taking Lomotil in 2012. I managed to find a good balance with Imodium but couldn't take less than 8 per day. If I did, I would be sick for the entire day. I got back to living my life. I met a wonderful man with 2 children of his own. He accepted my illness without questions and picks up the slack when needed. In 2015 we married and in 2017 he adopted my daughter as his own. Dr. Shiff still oversees my illness and I'm still heavily reliant on medication to not only control my symptoms but also to maintain my weight. I had significant struggles gaining weight after I got to 105lbs. Dr. Shiff intervened, found a medication to help and I was able to get up to a healthy 120lbs.
The biggest and most recent set back to my illness has been a change with the FDA and Imodium. I used to take 8 per day or approximately 240 pills per month. I would access the bulk Imodium from Costco. I could purchase 400 pills for $5.00. In 2019, the FDA changed their rules regarding the sale of Imodium. The allotted amount changed significantly and a person is only allowed to purchase 36 per purchase. My reliance on 8 per day meant that one box would last me 4 days. I began to panic, terrified of life without Imodium. Dr. Shiff once again jumped in to save me. He found a prescription to help supplement the Imodium thus dropping my daily amount from 8 to 4. I can now depend on one box for almost 10 days. Its not perfect, but I'm able to make it work. I am currently steady at 115lbs, still deal with my symptoms daily and have never, in 11 years been diagnosed. It would be amazing to finally know what is wrong, why and to actually treat a real disease rather than guessing and panicking when things go wrong.