How a Negative Eating Disorder Treatment Experience Turned Into Positive Recovery Opportunities
One and a half weeks ago, I was feeling so hopeless that all I could do was sleep and wish I’d never wake up. I was on a locked unit at an eating disorder treatment center, with alarms and locks on the doors, and mostly frosted windows, so light came in but I couldn’t see any nature or life outside. I had just spent two weeks in a hospital before transferring to this treatment center and hadn’t been outside except once to cross the road between hospital buildings. I came to the hospital in rough shape. I was malnourished, had hit one of my all-time low weights, could barely walk because I was so weak, couldn’t keep any food down and was terrified to let the nurses hook me up to my feeding tube. I was fixated on my weight and shape and whether I would gain weight too fast.
After three and a half weeks on this eating disorder unit, I realized the program was not equipped to meet my complex medical needs. They were also doing things that bordered on malpractice. They were feeding me three of their largest snacks a day, just to have me throw it all up afterward for hours due to severe gastroparesis. Gastroparesis is a motility disorder of the gastrointestinal organs. My colon and stomach are completely paralyzed and so I live with an ileostomy and a J-feeding tube that goes directly into my small intestines. The only part of my GI tract that functions is my small intestines, and even they are slow at moving nutrition through.
The treatment center did not believe that my vomiting was unintentional. They were convinced it was anxiety, so I was put on high doses of benzodiazepines that sedated me. All that did was cause me to puke on myself while asleep.
After an unfortunate episode, in which the team I was working with told me they were going to put me on a feeding formula I’m allergic to, as well as stop crushing my medications and no longer administering them through my tube so I could absorb them, I decided this was not the right place for me to be. My mom flew across the country and picked me up three days after I told my team I could no longer stay because they were putting my health at risk by forcing me to use formula I’m allergic to, as well as making me take my medications orally, which meant I was going off all 15 prescriptions cold turkey since I would just throw them up.
My outpatient team was skeptical of me returning home to outpatient treatment and were worried I would simply relapse since I was at the highest level of care and still completely tube dependent. My dietician and therapist told me they could not see me unless I went through the levels of care. When I told them I was coming home, they wanted me to find another treatment center to go to as soon as possible because I had received no therapy for the eating disorder at the treatment center. They know me well, and they know I have never been able to gain or maintain weight outpatient, so I don’t fault them at all for being cautious and worried. They have my best interest at heart and they truly want me to recover.
While I was at treatment, I met another young lady with many of the same diagnoses. We were both in similar mindsets: we wanted to get our stomachs working again so we could eat food and truly recover. She gave me the name of her PCP, who she thought was great. I figured I’d call her office and see if she was even taking new patients. When her office manager answered the phone, she said, “wait one second, let me get Dr. Klein on the phone to answer your questions.” That has never happened before, where the doctor can answer a question in real-time.
After I was discharged from the treatment center, we made an appointment with Dr. Klein for two days after we called, and drove to Boston to meet with her. She met with us for over an hour and a half. She listened to my entire history and she asked, “Why? Why do I have all these illnesses?”
This has been my question for the past 10 years. Why does my stomach not work? Why do I have such severe gastroparesis? Why do I have postural orthostatic tachycardia syndrome (POTS)? Why do I have mast cell activation syndrome (MCAS)? Why do I have Hashimoto’s thyroiditis? Why do I have chronic fatigue? This doctor was curious to find out. She was also realistic and told me she couldn’t promise she’d be able to find out what is underneath all my illnesses, but that she promised to help manage my symptoms.
It was clear to her that the gastroparesis triggered the eating disorder. She confirmed the treatment center’s approach of force-feeding me, for me to only puke it all up unintentionally for hours afterward, was not helpful and actually very dangerous. I’ve had a Malory-Weiss tear in the esophagus before, from vomiting, so I want to avoid vomiting as much as possible. The treatment center kept telling me if I didn’t use my stomach, I would lose all function. This doctor said, “It can’t get any worse than this!” She was basing her evaluation on my symptoms and observation that food and liquids that I consume orally stays in my stomach for 10 to 20 hours, and then I puke it up. I have tried many gastric emptying scans, but I haven’t been able to get past two hours without puking up about half of the radioactive eggs and having the test terminated.
This doctor told me medical marijuana is more effective than Marinol, which I’m prescribed for nausea. And I have noticed the effectiveness of medical marijuana as well, compared to the effectiveness of Marinol for my body. She suggested I depend on my tube feeds 100% for nutrition for now. She said to not deny myself a few bites of something that I want to eat, but to not force it. She doesn’t want to risk ripping my esophagus, and she doesn’t want me to continue to vomit multiple times a day like I was at treatment. She is referring me to a gastroenterologist who specializes in motility in the Boston area. She was so validating and completely understands feeling “crazy” when doctors can’t figure out or fix the problem. She even told me she will sit and eat meals with her patients who are actively struggling with their eating disorders. She is willing to carry my case and be my advocate. I couldn’t be more blessed with such a competent doctor now on my team.
I spoke with a doctor in Massachusetts who specializes in post-traumatic stress disorder (PTSD) the other night, about trying MDMA for healing purposes. However, I am currently on an antipsychotic and an antidepressant, and there are contraindications for MDMA and these types of medications. So, she suggested I look into ketamine infusions. There happens to be a clinic near where I live, and my parents know one of the professionals who work with clients there. Ketamine treatment will hopefully treat my depression, anxiety and obsessive-compulsive disorder (OCD) enough so I can get off the antipsychotics and antidepressants so that by 2021, I can do an MDMA treatment to start healing from complex PTSD. I’ll be starting Ketamine in late March of this year and feel hopeful about this possibility.
While I was at the treatment center, the same young lady who gave me her eating disorder doctor’s name gave me her geneticist’s name as well. I called their office assuming the doctor would be booked out for months, if not years. But they were able to get me in to see the doctor in early March. This doctor will be checking for Ehlers-Danlos syndrome (EDS) and mitochondrial disease, as well as any other genetic illnesses that could explain my diagnoses and symptoms. And Dr. Klein is looking into congenital diseases that would normally show up in early childhood but can show up later in life.
I feel like I finally have a team who is curious and interested in helping me figure out how to live the best life I can. I feel supported. My dietician and therapist have agreed to see me again after they speak with Dr. Klein and my other PCP, and after we come up with a plan for relapses, which are part of the recovery process.
Today, I found out I have gained weight since last week. There is a part of me that is nervous about gaining more weight since we are at our low range of “healthy” for my body and height. But I was able to fact check and realized I had just had a bag of saline intravenously at the hospital where I was getting my feeding tube exchanged for a low-profile button.
I got a call today from the other treatment center I am looking into, and I found out they do carry the formula I can tolerate, and that they do crush medications and put them through the tube. But — and here’s where it gets exciting — the team does not think I need inpatient level of care at this time. I have gained enough weight this week and a half to stay home, continue to recover and avoid using behaviors, as I’m doing now.
I’ve never been able to gain weight outpatient, and avoid using other eating disorder behaviors. Today, I can say I have gone the longest amount of time at home, outpatient, without using an eating disorder behavior and with not restricting at all, and still being able to even gain weight. I’m amazed by my strength. I know it may seem small to an outsider, but for me, this is a huge recovery win and proof for myself down the road that I have all the power I need to stay on track or get back on track.
Photo by Jake Noren on Unsplash