When I was diagnosed with gastroparesis, the last thing I ever thought I’d end up on was a feeding tube. I was told to take a double dose of my acid reflux medication, and if I was having more issues, then to take Reglan – a medication known for a very damaging symptom called Tardic Dyskenesia. I did what I was told, I took my medication. My first stomach emptying test came back at 88%. That meant that my stomach emptied at 88% over 4 hours, which meant I had a very mild case of gastroparesis.
Later that year, however, I relapsed hard from my anorexia, remember? Not even much later, it was in the next three months. I began drinking with little to no food in my stomach which was the worst thing for me and my gastroparesis. I would begin to vomit non-stop and suddenly I was losing friends because I as ‘toxic’ from my eating disorder. I’m not going to lie, it hurt.
2015 didn’t start out badly with my gastroparesis, but I did hit my lowest weight from my eating disorder. Slowly though, I started to gain weight, and with it a lot of bloat, and I realized it was from my gastroparesis.
By the time I attended Dragon*Con, I was 106 pounds. By the time I came home, I was so flared from my gastroparesis that I weighed 122. My lower legs, feet, and ankles were swollen from edema, as were my face and hands. I took some diuretics and slept with my feet on a pillow to keep things controlled. At NYCC, it was the same way. It hurt to walk, some of my costumes were painful to wear, and I was just miserable. Thank god for adjustable Sansa Stark costumes, right?
LI Who 3 was the worst. My stomach had ballooned to the point where my skin was hyper-sensitive. It hurt to touch it, and it bend over. I remember our last night we were helping a friend shoot some B-Roll for a student project, and my friend A had to lace my Amy Pond Doc Martens for me because I couldn’t bend over to do it.
Two weeks later was Thanksgiving, and since I worked at Target, I worked Thanksgiving night. Having had Thanksgiving dinner, I was queasy as hell. I lasted barely any hour before I shut down my register and ran into the bathroom to puke. My LOD told me to go home, and while I was sitting in my car trying to calm down, I had to open my door twice to vomit into the parking lot.
I’m not going to lie, I went Black Friday shopping with A once I got home and changed. I’m a shit like that.
However, my body couldn’t take it any longer and I researched gastroparesis specialists at Thomas Jefferson University Hospital. The first one that came up I made an appointment with; it turns out that my mother grew up nannying his children and he lived a few houses down from them! Since then we’ve become very close, and I know I can text him with anything.
But back to the feeding tube situation. I met with him January of 2016, and he did an endoscopy with Botox. I was able to eat, but was still severely bloated. This kept happening right through June, where I spent the day in Philadelphia with a friend, showing her the sights. She’s a history lover (and a Hamilton lover), so she wanted to see everything. When I couldn’t run up the beloved steps of the Art Museum Rocky style, I knew there was a problem My stomach was distended, and again my legs, ankles, feet, face, and hands were swollen from edema.
That was the day I decided to stop eating.
I’ve said before that our mantra for Gastroparesis is #starvingforacure, and those words are more than true. I know women 60 pounds and starving because they can’t even tolerate feeding formulas, their stomachs are that far gone. I know girls who’ve died of the disease because their insurance companies have denied them coverage. And then there’s me.
I dropped 18 pounds in the first 10 days. I napped constantly. I tried to drink ensure, but drinking more than 1 made me sick. I was dehydrated and felt faint constantly. Do you know how hard it is to force yourself to drink water when you’re starving yourself? Do you also know how hard it is to purposefully starve yourself rather than your brain forcing you to? Anorexia vs gastropareisis is a terrible thing, and then anorexia took over, and then it was both diseases.
I did another stomach emptying test, and this one came back at 12%. My crappy stomach worked at 12%, digested at 12%, did everything at 12%. The people running the test were so shocked because I simply stopped digesting at 2 hours out of the 4, and called my doctor because they were worried I had a blockage. He had just seen me though, and knew I didn’t have a blockage, so they let the test go on. Meanwhile…
When I called my doctors office and told them I hadn’t eaten in 5 weeks, they booked me for an endoscopy two days later. They didn’t find anything but did more botox. I was then referred to a general surgeon for a pyloroplasty.
The surgeon..let’s just say she wasn’t Meredith Grey. She was a raging bitch and I hated her. She suggested a feeding tube after surgery but I freaked out and said I’d think about it.
On the day of my surgery, August 17th, I arrived at the hospital at 6:30 am. By 8 am or so I was in the OR, intubated. I don’t remember what time I came out, but I had an NG drain down my throat and a PCA pump of dilaudid to press every 6 minutes. My stomach hurt. I couldn’t pee for three days. Everything hurt.
They pulled the NG out after a day, and the huge gauze bandage off my stomach a few days after that, to expose the steri-strips on my stomach. I had four scars and then one point in my bellybutton. I hated them. But I went home after five days and I was so excited. Except…
I ended up in the ER less than 36 hours later. I was vomiting non-stop and couldn’t even keep water down.
I was quickly diagnosed with SMA syndrome, and given another NG drain. I was sicker than I had ever been in my life. I had a severe stomach blockage due to losing so much weight so quickly, and in the middle of the night they rushed me back to Jefferson. I was so out of it, I don’t even remember getting back to Jefferson. I laid in bed, sometimes being transferred (painfully) to a chair, where I’d just fall back to sleep. I was in their ICU for 3 days, and then spend over two weeks in a bigger step down units. After being there for five days…I was taken to get my first tube.
I was given a GJ tube. Most people do well on these tubes, but mine was hell from the beginning. I woke up because they were taking the tube out of my throat, and it hurt like hell. It wasn’t a gently detubing, it was a “i’m going to yank this tube out of your mouth as hard as I possibly can”. After that, I was in so much pain I was screaming and the nurse was the biggest asshole – which is one reason I hate male nurses. I feel many lack compassion. I was just told to shut up and stop screaming, but YOU try having a foreign plastic object in your stomach all of a sudden!
I went upstairs and they gave me more medication, but I was just in agony. They didn’t start feeds until they next day, and I don’t remember when it started clogging, all I remember is that it clogged and didn’t stop. We were always able to get it unclogged until one day when the tube just gave up and I was expected to deal with it.
Not okay. How do you tell a patient to ‘deal’ with a faulty tube when she can’t eat?
I went home 9/8/16, the day before my 27th birthday. I spent my birthday in bed, with my cake brought to me. I don’t even remember if I could HAVE cake, but I know I was surrounded by my siblings, parents, and nieces and nephews, and was drugged out of my mind. Monday I landed in the ER again because we were pulling green gunk out of my jejunum, and my GI doctor had had it. He scheduled me to get a picc line for TPN and to get my GJ removed!
The picc proved to be it’s own issue. After only two weeks I got an infection and it had to be pulled. Bye bye, tube feeding.
I was able to eat, though, and when I went to NYC for NYCC I ate. And ate and ate and ate. There was no end to my eating, and I didn’t gain a thing. It was amazing. But around Thanksgiving, my symptoms came back. Bloating, severe weight gain with food. Doctors brushed me off until I landed in the hospital before Christmas. With that hospitalization came a psych consult, because they thought I was making up my symptoms. I was furious. I ended up in the hospital again on New Years Day, and then again a month later, for 12 days.
When I was in for 12 days, I had a septic fungal picc line. I went into DKA the second night there with a blood sugar of 743, and was rushed to the ICU. To say my stay was scary is an understatement, but I got an amazing thing out of it: a port.
In my last post I said that my port is the best thing I’ve had, and it’s true. It’s made my life so much easier. They take my blood from it, they run saline through it if needed, and most importantly, I feet into my chest/heart from it. I’m able to do my TPN, which stands for Total Parenteral Nutrition and is another form of a feeding tube, whether by port or picc/central/hickman line.
I am a Spoonie Tubie and I’m not ashamed. In public I carry my TPN in a pink floral Vera Bradley backpack and I am not ashamed when my tube shows. Why should I be? It’s a part of me, it’s an extension of my body, and it’s keeping me safe and nourished.
The thing is, though, I will always be underweight. At 101 pounds and 5’4′ I’m more than underweight. Sometimes I catch a glimpse of what I really look like and it scares the hell out of me. I look like I have a bobblehead. I’m malnourished. I don’t fit in the clothes of an adult.
But I’m alive, and that’s what matters. I don’t have to starve myself in order to feel better with my stomach anymore. I have zofran in my TPN bag that helps me with that, among other forms of anti-emetics. I may or may not always need a tube; we don’t know that yet, but for now I’m a tubie, and I’m not ashamed.
Life will always find a way to have an out.