Jenn’s Life

I love clambering! (Havasu Creek)

Though we didn’t realize it at the time, I had stopped sweating (part of my autonomic failure). So when the heat and humidity rose, so did my body temperature (up to 101̊̊ at one point).

Family Portrait! These are the people who who didn’t just make our trip safe and fun—they made our trip!

This is The Man!

SUCK RUBBER! (i.e., kiss the raft so you don’t get thrown off in the middle of the rapids!)

The falls at Stone Creek

The Clamberer strikes again!

This is the kind of scenery we had to endure for six whole days! Can you imagine??

Grand Canyon

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Implanted port (Portacath): This is a completely subcutaneous port which, when accessed by a (very large!) needle, serves as my feeding line for TPN. After numerous failed PICC lines, we decided to try a more long-term approach with this kind of central line (this one was placed December 21^st, 2006). Currently I run the TPN for 12 hours at night, which seems to work fairly well for me.

J-tube (jejunostomy, feeding jejunostomy): This is the tube I had surgically placed on February 7, 2006. It is implanted directly into the small intestine, well past the exit from the stomach, through the abdominal wall. It is used to provide nutrition for people whose stomachs are problematic (as is mine) or who suffer from untreatable acid reflux (causing them to choke and aspirate the fluid into their lungs). J-tubes are much narrower than g-tubes (see below), and the liquid nutrition must be pumped very slowly, as the small intestine is used to small amounts being released by the stomach at regular intervals (something my stomach, apparently, has completely forgotten how to do, unless 16 hours is considered an acceptable interval). So while I was on tube feeding for those five short months, all my nutrition came through the j-tube—the “entrance only” tube. Now I use it for medications, but that’s all.

G-tube (gastrostomy, PEG, percutaneous endoscopic gastrostomy): This is a tube that is implanted in the stomach itself, through the abdominal wall. Usually it is used to feed people who for various reasons cannot take food orally. However, as in my case, it can also be used to decompress the stomach—releasing gas, air, and liquid that is not effectively exiting the stomach via the pyloric valve. I will not be receiving any nutrition through the g-tube—it is strictly an “exit only” tube.

So what happens to the stuff I let out of the g-tube? Well, it’s kind of like burping and vomiting through my abdomen, without the muscle contractions, salivary overload, acidic nostrils, and other various and sundry experiences of a really good barf, so it goes, well, where that sort of stuff goes. I measure how much fluid I let out, and make sure I replenish it by drinking Gatorade-type drinks. I won’t be able to eat solid foods like hamburgers or pizza or anything like that—but things that turn liquid (like ICE CREAM!) and won’t clog the g-tube should I need to release them will be fun to have again. And not everything I eat will need to be let out that way. On good days, I may not need to use the g-tube at all. And sometimes some ice cream (or pudding, or mashed potatoes) may actually make it through the stomach. But those are merely bonuses—I am dependent on TPN for all my nutritional needs.

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.