The Timeline

February, 2007: We’re doing well. Though I was hospitalized three times between Thanksgiving and Christmas (twice with sepsis, and once for IV support before getting a new port), I am discharged December 23^rd, just in time for some last-minute Christmas shopping. I’ve been doing well on TPN, using my j-tube for medications (including tincture of opium to help manage the severity of the diarrhea) and my g-tube for gastric decompression. The neurostimulator has been in place for over two years, and since it has not helped, we’ll probably have it removed when the battery runs out (estimated to be 5-8 years after placement). We’re hoping that with time the technology will improve, and that greater information about gastroparesis and its treatment will prove beneficial.

In the meantime, we maintain a busy life—reviewing movies, publishing books, and still working full-time in mainstream vocations. Thus far I have no symptoms or indications that TPN is adversely affecting my liver or other organs; and we’re very hopeful that the port will keep my tendency toward line sepsis at bay (I’ve been septic six times).

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Memorial Day weekend, 2003: I start having digestive troubles—nausea, early satiety, weight loss. A few tests are done, nothing definitive.

September, 2004: I am finally diagnosed with profound gastroparesis. I try all the available medications, each of which causes side effects that are untenable and/or dangerous (tachycardia, agitation, pain, etc.).

October 2004: I am admitted to the hospital to start IV nutrition (Total Parenteral Nutrition, or TPN). We hope that this is temporary—a mere stepping stone until I get a gastric neurostimulator, which is the latest, greatest treatment for gastroparesis. November 2004: I undergo surgery to place the neurostimulator, with hopes of eating again (after a year and a half of misery) looming over the horizon.

January, 2005: Despite our hopes, I am unable to eat anything yet. Still experiencing extreme episodes of nausea and vomiting, still on TPN. Late in the month, I have my first face-off with line sepsis: candida growing from my PICC. A few high fevers and several days in the hospital get me back to “normal,” if fragile.

March, 2005: Still on TPN, still unable to eat more than a few crackers without horrendous nausea and vomiting. Yet another line infection lands me in the hospital yet again, with doctors trying everything they can to convince me that I don’t need TPN. My GI/motility doc continually accuses me of relapsing into an eating disorder (a problem I have been literally delivered from as of 1996); other docs question my TPN-dependence. It is an awful period of self-doubt and ingrained fear of the medical system.

July, 2005: Just before a scheduled vacation to our beloved Scotland, I spike a fever and am hospitalized once more. The blood cultures, however, never turn up anything concrete, so after nine days of captivity and arguing with condescending physicians, residents, interns, nurses, and anyone else who refused to believe that I was still having major symptoms of gastroparesis, my husband and I take our trip to Scotland—TPN and all.

Labor Day, 2005: I go to work, and within 30 minutes my temperature escalates from normal to 104.7̊. We head for the hospital, where blood cultures confirm line sepsis again. At this point, we decide the risks of TPN are outweighing its benefits—I am weak, tired, and the line infections are taking their toll emotionally as well as systemically. We decide to forego further TPN, and I am discharged without a central line. For the first time in eleven months, I feel the freedom of not having an anchor to drag around, not having to keep my arm dry in the shower, not having to worry about infections all the time.

February, 2006: My health is downright failing. I’ve had to cut my full-time hours at work to part-time, which affects my self-esteem as much as our income. I’m struggling to maintain any semblance of a healthy body weight. I’m eating as much as I can, drinking sickeningly sweet supplements, nauseous 24 hours a day. Even my dreams are invaded by nausea and vomiting. We research, talk, and decide to try tube feeding via a j-tube. While our physicians aren’t overwhelmingly supportive, we insist, and on February 7^th I have the surgery.

I like tube feeding. I am able to gain some weight, feel stronger, go back to full-time hours, and have the energy to enjoy myself for the first time in months. The reduced stress of not having to force-feed myself is dramatic. Despite increased GP symptoms when I do eat, I am less concerned since anything taken orally is “recreational.”

March, 2006: The increased symptoms threaten to cause dehydration, since often I cannot keep down enough fluids to supplement the 24-hour tube feeding. After much debate and an x-ray to “prove” that I still have profound gastroparesis, my GI/motility doc agrees to place a venting gastrostomy, to decompress the contents of my stomach and reduce actual vomiting spells. It is a blessing, and increases the amount and variety of food I can eat “recreationally.” Since I am unable to tolerate a high infusion rate, I tote around a backpack with my tube feeding all day. It’s annoying (I call it The Anchor), but it works.

March–July, 2006: Tube feeding is wonderful. Though I often resent the 24-hour anchor, I feel better than I have in years. Unfortunately, I start having symptoms similar to tube-feeding intolerance, so I reduce the rate in hopes of stabilizing. I lose some weight, get dehydrated, and have constant diarrhea. A test comes back positive for Clostridium difficile (“C. diff.” to most people), and ten days before we begin a six-day Grand Canyon raft trip, I am hospitalized again to restart TPN, temporarily—just until the infection clear and I can tolerate my tube feeds again.

July 26–31, 2006: We raft the Colorado River for six days, on TPN. The few, the proud, the uninhibited-by-major-health-issues.

November, 2006: The intestinal infection clears, but the symptoms never do. I am officially deemed “TPN-dependent,” and after yet another battle with PICC-line induced sepsis (Pseudomonas this time), we decide to have a more permanent central line placed. I get my first implanted port, we donate my tube-feeding supplies to a medical mission in Morocco, and we settle into the permanence of TPN.

 

Intro to Jenn & GP: Part I

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”

 

Intro to Jenn & GP: 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…