Tubes, tubes, and more tubes

Having chronic illnesses isn’t easy. I’m constantly told how brave I am, how amazing I am, how strong I am. Let me tell you, you don’t feel brave, amazing, or strong when you’re puking up a Starbucks frappuccino in your GI doctors office (this actually happened to me a couple hours ago). You feel weak, letting your illness overwhelm you in such a way. You feel helpless, knowing that no amount of medication is going to stop the vomiting, nothing will stop the pain in your gut, and nothing will get the disgusting taste out of your mouth.

Around this time last year was when my gastroparesis first became more than just this annoying thing causing bloating and regurgitation. It became this thing that caused me to put on 25 pounds in a day, that made everything from my knees down swell painfully and rock hard from edema, and made me want to die in general from the way it made me feel. It was this time last year that I stopped eating for my health. Yes, you heard me. For my health. You see, one of the only ways to get out of a gastroparesis flare is to starve it. You starve away the bloating and water retention. You do liquids only, and limit the salt (that came back to bite me in the ass in the form of POTS). In ten days, I had lost 18 pounds. By August I had lost 25 and my GI doctor decided I needed a pyloroplasty, where they cut open your stomach muscle so that it doesn’t have to contract every 2-3 minutes to let the food flow through.

I was told the surgery was a success. I was in the hospital for five days, before I went home. I laid in bed in pain, vomiting for 36 hours, before I was rushed back to the hospital. I was diagnosed with Superior Mesenteric Artery Syndrome, or SMA Syndrome, for short. This basically meant I had a blockage of my stomach to my bowels. A NG drain was shoved down my nose (it stayed there for 5 days) and this was my first tube. It was the most uncomfortable thing I had ever felt. Constantly swallowing with a tube down my throat was horrible, and I was glad to see it go.

But it was replaced by a GJ tube.

This GJ tube was the bane of my existence. I woke up from surgery after a nurse yanked my intubation out, leaving me screaming from the pain in my throat, until I realized how much my stomach hurt. Every time I screamed, I could feel the tube seemingly suck against my back. Weird to explain, but that’s how it felt to me. I remember screaming and crying for an hour, and no pain medicine would help me.

Cut to the next two weeks of hell. They tried starting me on feeds the next day, at 5ml an hour, and even that was too sensitive for me. I think I only got up to 15ml an hour before it started alarming, and that was the start of the never ending clog-unclog-reclog cycle that was my GJ tube. I never got anything in my, and I dropped dangerously down from 101 pounds to 90 pounds, because I wasn’t getting any food/nutrition in me, only ‘comfort foods’ like broth and water ice, and that ran out whenever I vented the G portion. They tried to pull the J tube out at bedside, but it was still sutured in so they literally had to shove it back in, which hurt like hell. Eventually they did an X-ray, and found out that it was twisted and kinked in my jejunum, and that’s why it was getting clogged so much. I was eventually sent home with the tube the day before my 27th birthday.

The following Monday I found myself in the ER, because we were pulling green gunk out of the tube with a syringe, which wasn’t normal. My doctor downtown was frustrated and we finally got me set up for a tube removal and a PICC line to be placed, with TPN set up.

I loved the TPN. It gave me freedom to do what I wanted. I could disconnect and go to dance class if I wanted to, even if I had a bit of movement restriction. I was so malnourished and skinny, it scared me, a recovering anorexic, but eventually I started to build muscle again. However, I wasn’t gaining weight and I seemingly had an entirely different body type than I previously had (I still can’t gain weight and I still have this impossibly small body – it’s like a pre-teen before puberty).

My picc line got infected after two weeks, and I stopped TPN and began eating again. I went away to NYC for a weekend and was able to tolerate everything, eating to excess, and I was fine. I was fine until a week before Thanksgiving, when all my symptoms hit me like a truck again. I was barely able to eat Thanksgiving dinner before getting sick and crawling into bed. It continued this way for a few weeks before I landed in the hospital the week before Christmas. I was begging for the TPN back, but they thought it was all in my head because there were no physical signs of me being sick. So what did they do? They called psych on me. And one of those doctors was one I have a horrible relationship with. They told me it was all in my head. Literally. So I made them do another gastric emptying study and guess what? It showed up that I was delayed again. So fuck you still, it’s not in my head.

I went home and ended up in the ER a week later, and a few weeks after that I ended up on TPN again. That time, however, I ended up getting a septic fungal infection in my picc line, and was in the hospital for 12 days. That was when they decided to stop screwing with picc lines and gave me a power port.

Since February, I’ve been doing TPN with my port successfully. I absolutely love my port – I was in the hospital three weeks ago and there were no needle sticks – everything is through the port, even blood! I can wear long sleeves, I can take off my shirt, everything is so freeing. My port is the best medical device I have besides my insulin pump.

Today though, I had an appointment with my GI. Things haven’t been going so great. Sunday night was somewhat of a deal breaker – I cried on my moms bed to her for almost an hour over how nauseous I was, and I knew things weren’t looking good for me. My handle on food is getting increasingly bad, to the point where I’m basically playing Russian roulette with my stomach – it’s give or take whether it’s going to go sour, but lately everything is horrible. I almost ended up in the ER Sunday because of uncontrollable nausea.

Anyway, today. I spent a lot of time with the nurse practitioner before my doctor came in. He was solemn and upset, telling me that he has no idea what to do with me, that nothing is happening the way he wants it to (you’re telling me, Dr. Cohen!) Honestly, don’t tell your patient that, because chances are they already know and they’re already as fed up as you are. We discussed tube options – I want a separate G and a J, but he wants a GJ again. We battled back and forth, with him getting annoyed at me seeking help in friends and support groups, and referencing my other diseases, which outrages me. My other diseases are important and central to my gastroparesis. They affect it, they affect the seriousness of it, and they affect the outcome of it. I also believe that my tube options should be my choice since it’s my life, my lifestyle, and I’m the one who has to live with the damn thing.

So, on the 20th my mom and I go back to him and I learn my fate. But since August, my life has been nothing but tubes, and I only foresee tubes in my future.

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