Jenn’s Life

There’s nothing like having a condition that, when you mention it to a physician for the first time, they instantly say something like “Eww” or “Yuck” or just sadly shake their heads. That’s because physicians are the only ones outside of the patients and their immediate families that know how unpleasant such a condition can be. Not that other conditions don’t elicit a similar response, but with all the health issues I’ve had throughout the years, gastroparesis is the one that has rendered more doctors speechless with a certain combination of pity and dread than any of the others.

That’s because gastroparesis generally stinks.

For the uninitiated, gastroparesis is a motility disorder—break the word down, and you have gastro (stomach) and paresis (paralysis)—basically, “stomach paralysis.” Depending on the severity of the dysfunction and the individual digestive traits of the person afflicted, symptoms can range from mild discomfort and bloating to severe pain, nausea, vomiting, and malnutrition. Either way, eating becomes a constant source of tension and apprehension, with a side order of psychological torture.

So somewhere between health and now, my stomach surrendered its given function in favor of idleness, and what a healthy stomach does in about ninety minutes, mine takes a little over sixteen hours to do. In the meantime, whatever I eat kind of sticks around, ferments a bit, and then often makes a grand reappearance via nostril.

For me, it started in 2003, right after I turned 31. A day of hard physical labor in preparation for Memorial Day weekend left me sunburned and oddly appetite-less. I didn’t think much of it until my appetite didn’t return, and I began experience pretty severe nausea whenever I’d eat or drink anything. Unfortunately, I have an eight-years-past history of anorexia nervosa, which significantly prejudiced every medical opinion we sought. By September, I’d lost 35 pounds, was dehydrated, and my (thankfully strong and overwhelmingly compassionate) husband had to carry me up the three flights of stairs to our apartment. And still the doctors stalled.

I finally had a gastric emptying study—a wonderfully pleasant experience when eating is the bane of one’s existence. Basically, the study involves eating some scrambled eggs with salt and pepper and irradiated bits of stuff, then lying on a cold hard table with an x-ray pointed at your belly for 90 minutes. Every five minutes or so the x-ray takes a shot of the contents of the stomach, marking how much of the irradiated food has actually made its exit. The test came back “mildly abnormal” (a.k.a., “doesn’t explain anything”). However, a subsequent upper endoscopy revealed a large ulcer right at the exit of my stomach in the small intestine. Aha! We innocently thought. The source of the problem! We’ll heal the ulcer, and life will return to normal!

It did return to somewhat normal—I only gained back about half of the weight I’d lost, and my appetite never fully returned, but for nearly a year I was OK. But hey, this is life—expect the unexpected.

The summer of 2004 brought a return of symptoms—this time with pain and profuse morning vomiting of completely undigested food (hey, you’re the curious one—don’t blame me for the revulsion). Once again, the weight started dropping rapidly, and the doctors stalled. When a follow-up upper endoscopy showed the ulcer entirely healed, we were devastated. Without the ulcer, we had no explanation, no foundation for our arguments against an eating disorder relapse, nothing.

… I felt silenced, confused, despairing. Lost.

I went to my follow-up appointment with my tail between my legs, knowing that I was most likely going to get a referral to a psychiatrist. While that did come up, he also suggested a follow-up gastric emptying study—not that we expected any changes, since there was no evidence of food in my stomach during the endoscopy, but it would be good to know nothing had changed there, too.

So I ate the irradiated eggs, and lay on the table for two hours, and hoped against hope that something would show up abnormal.

The next day, I went to work (the hospital where I worked was affiliated with the hospital where I had the test done) and with some trepidation checked to see if my results were in. When I pulled up the report, I was dumbfounded. I scanned it quickly… picked up a few key words… then printed it out to make sure I wasn’t misreading something.

But there it was, in black and white—I had a diagnosis. Not a great diagnosis, not a very pleasant or hopeful diagnosis, but a diagnosis that was NOT psychiatric. As I mentioned before, a normal stomach empties half of its content within 60 minutes. There, at the bottom of my radiology report, was the proof of my misery: Estimated gastric emptying half-time 492 minutes. My stomach was literally eight times slower than normal.

I have gastroparesis.

Click here for “Intro: Part II”

So we had a diagnosis. Unfortunately, the relatively few motility agents available all caused some undesirable side-effect: Reglan caused unbearable agitation, anxiety, and a firm belief that at any moment I would, quite literally, crawl out of my skin. Erythromycin left me doubled-over with abdominal pain, in addition to the nausea and vomiting. Domperidone (a drug only available outside the United States) caused my heartrate to climb to 140-150 beats per minute, again on top of the nausea and vomiting. The only hope left was something called a gastric neurostimulator, a relatively new device that, when implanted in the abdominal wall, sends electric stimulation (much like a heart pacemaker) to the stomach muscles, causing them to contract in some semblance of normalcy. Insurance battles aside, I was at least a candidate for that.

In the meantime, though, I was very sick. A horrendous initiation into the world of labyrinthitis brought me back to the local emergency room, extremely dehydrated and unable to walk from the vertigo. (They sent me home again anyway.) A week later, I was finally hospitalized and TPN (Total Parenteral Nutrition, or IV nutrition) was started. (See “TPN: The Initiation” for details on that experience.) A few weeks later, my insurance approved the neurostimulator (TPN costs over $500 per day, and insurance was more than happy to find any other means of sustaining my life). Surgery was scheduled, hopes were raised, and I was due to be off TPN by the first of the year (2005, that is). No such luck. The stimulator, while helpful, averages a 40% decrease in symptoms over a 12-month period. So that basically translates into being able to eat 7 soda crackers before throwing up, instead of 5.

Not exactly normal.

Over the next ten months, I remained on TPN (feeding through my superior vena cava), trying to eat as much as I could, but still suffering from immense nausea and occasional vomiting. As a result of the concentrated nutrition running through my bloodstream, I got three serious infections—each one requiring hospitalization and IV antibiotics and placement of a new central IV line and various and sundry other complications.

The last straw came in September of 2005, when my temperature suddenly spiked from normal to 104.7º in less than thirty minutes. After a few days in the hospital and some serious deliberation, my husband and I decided that IV nutrition was no longer an option—the risks of infection and the overwhelming intrusion was just too much to continue. We decided to give “oral feeds” (sounds like a horse, doesn’t it?) a try once again.

So here I am, scratching and clawing my way to a triple-digit weight, still nauseous whenever I eat, still vomiting, still wondering what my life will ultimately look like. It’s no secret that I am enjoying the relative freedom of not being on TPN—no life-threatening bloodstream infections, no dressing changes, no weekly lab draws, no anchor to drag around. But there is a definite cost, and that weighs more heavily than any scale can measure.

P.S. As of July, 2006, I am “TPN-dependent.” Suffice it to say I tried everything…

OK, so (as per my routine) I turned the one-nighter in the hospital into a two-nighter, but at least I have my j-tube!

So far, I am enjoying tube feeding (yes, you read that right, enjoying). It is monumentally easier, safer, and more convenient than TPN, and requires much less stress, energy, and projectile vomiting than trying to eat. It hurts more than I think it should, and it looks kind of freaky, but I feel better than I have in a long time. I’m tolerating the tube feeding formula (Jevity 1.2!), and the simplicity of the whole daily routine beats the heck out of TPN. The only problem I’ve had is a new-onset problem that may be related to the j-tube partially blocking my small intestine (the surgeon denies the possibility, but my symptoms—including immense bloating and vomiting 2+ liters of fluid in a single episode—indicate otherwise). At any rate, it’s not major emergency, since I’m getting plenty of thin liquids by mouth, and all my nutrition from the tube feeding. I see my motility doc next week (not my favorite plan of action) to check the neurostimulator (again) and try to convince him that this is NOT the same as before, nor is it an eating disorder (which he loves to blame everything on, despite the fact that I’ve been 100% “clean” of ED behavior for a full decade now).

The other major wrestling match we’re having with the docs is over a venting gastrostomy—a tube (similar to the j-tube) implanted into the stomach with a “pressure release” valve—so when the pressure builds, I can release the contents of my stomach through the tube, and avoid vomiting (and ruining my teeth in the process). A month ago, when we were chatting with the surgeon re: the j-tube, I asked about a venting g-tube, and he blithely said that my motility doc could easily place it in an office procedure (I knew it was a simple thing). This past Monday, however, he COMPLETELY changed his story (seems common with the docs at the medical center I frequent) and said he would NOT recommend it since another patient who did get one got a life-threatening infection around her neurostimulator. Now, I truly understand their caution, but I’ve had four life-threatening bloodstream infections from TPN. I know how to take care of various tubes and appliances. I am aware of the risks—AND the benefits. I’ve done it the doctors’ way for over two years—this isn’t a split-second, uninformed decision. It’s about my quality of life, my acid-washed teeth, and my belly swelling up with three liters of fluid just waiting to exit my oral and nasal passages in one long, painful explosion.

Now, it should be clarified that a venting g-tube is not a bulimic tool—it doesn’t act as a purging mechanism, since only liquid can exit the tube. It is merely an “emergency pressure release valve” that prevents erosion of tooth enamel and the other various unpleasantries of projectile vomiting. Besides, I still get ALL of my daily nutrition and calories via the j-tube; any oral eating is strictly “recreational.” But I would like to be more recreational than tea and chicken broth. Before the j-tube, I could at least eat baby food, well-soaked crackers, tofu, and hard candies. Now, any one of those things can cause a minor “blockage,” resulting in fluid accumulating in my stomach until I literally explode from the pressure. I weigh a mere 101 pounds, and the 2+ liters that accumulates is significant.

So, Monday, February 27, I’ll see my schizophrenic motility doc (sometimes he’s nice and pleasant, sometimes he can bring both my husband and me to shamed tears) and see what he says about the NEW symptoms and the possibility of a venting g-tube. Regardless of his response, I WILL get a g-tube. I know the potential risks, and, for me, the benefits outweigh them. So either he can implant the tube himself and be assured of its careful and sterile placement, or he can let someone else do it, and risk damaging “his” neurostimulator (I’ve never felt like it was mine—it’s always been about him and his FDA protocol). It’s his choice.

Meanwhile, I’ll be continuing my tube-feeding routine, happy for the guaranteed nutrition in spite of the increased nausea and vomiting.

Such is the gastroparetic life.