Jenn’s Life

FREQUENTLY ASKED QUESTIONS

Your pictures show that you have a g-tube, a j-tube, a gastric neurostimulator, AND an implanted port. Why so many gadgets? Do you use them all?

Well, yes and no. The gastric stimulator is still in there, and I know it’s performing its given duties because every once in awhile I have a day where I can feel the electricity every five seconds. But it doesn’t help, per se. The j-tube is used for medications only, though I’m considering switching my meds (as many as possible) to IV, so I can have one less orifice. The g-tube is very useful in that I have to drain my backed-up stomach of fluid and gas and whatever else is hanging around in there at least once a day. And the port is my primary mode of receiving nutrition, hydration, and some medications.

You seem to know a lot about your illness. Is this by choice?

Very definitely, yes. I have always been fascinated my medicine—in fact from the time I was 12 until I actually started college, I had my heart set on becoming a doctor. As a child and teenager, I read medical books for pleasure (and I became a fantastic hypochondriac in the process, as my beleaguered parents will have you know). I have exhausted the King County Library System’s store of non-fiction narratives about doctors being doctors, and have enjoyed nearly all of them, and my absolute bar-none favorite section of Discover magazine is “Vital Signs.” Needless to say, I’ve gleaned a lot of information over the years.

Before the gastroparesis hit in 2003, I was diagnosed with fibromyalgia syndrome, and I learned all I could about that—causes, treatments, current studies, etc. I even participated in a clinical trial for Mirapex (an anti-Parkinsonism medication). When my stomach gave out, I researched all the possibilities, and when the diagnosis of gastroparesis was finally reached (one which I actually hadn’t discovered on my own), I dug into that one, too. I still read up on new treatments, and I’ve researched other diseases and syndromes in the process. The human body fascinates me, and my job in a specialty hospital is yet another place for me to gather information and insight.

Your writing obviously reflects a pretty positive (if sardonic) approach to your illness. Do you ever get discouraged or frustrated?

No. I’m pretty much perfect. Nothing ever bothers me, and the various inconveniences don’t trouble me in the least. When my IV line gets tangles around me, or the IV pole gets stuck in the carpet and tips over, I just smile sweetly and gently twist the wheels until they move smoothly. (Just ask my husband.) I never burst into angry tears when I have to be hospitalized for blood transfusions or “septic events.” I’m always very pleasant when carrying my three extra bags of medical supplies for a two-day retreat, and I never complain about the fact that I’m paying for meals that I won’t even smell, let alone eat. I eagerly anticipate those lovely moments when vacations or social events are disrupted by violent nausea and/or fevers and/or exhaustion. And—best of all—my constant nausea and completely uncontrollable diarrhea don’t even phase me.

I’m sure the sarcasm is not lost on you. I must admit, the rather dark humor that characterizes my writing is often borne out of a sense of unwillingness to roll with the punches. Just ask any of my colleagues at work how much I enjoy unanticipated events. By nature, I am not an easy-going person. I am impatient, slightly too quick with words for St. James to approve, and somewhat less than free-spirited. Mess with my meticulously structured life, and you have a minor volcano on your hands. Any patience, endurance, forbearance, joy, even-temperedness, or acceptance you might see in my writing is entirely attributable to the Holy Spirit’s work in my life. On my own, I am a grudge-holding, entitlement-driven, I-don’t-deserve-this type of person. But the truth is that I am able to handle my illness with much more grace, tenacity, and insight than I would have expected of myself before it started four years ago.

I have bad days—really bad days. I cry. I rant and rave about the unfairness. I get snappy at family holiday gatherings as all my beloved friends and relatives eat themselves silly on foods I may never eat again. I use potty language when my plans (or my beloved husband’s plans) are superseded by my illness. I get tired of talking about it, yet I’m often self-righteously (and ironically) offended when people forget my limitations and offer me food. I still resent that I cannot fully participate in family gatherings and parties and social events. I fear the future, I regret the past. I get discouraged when the word “never” creeps into my mind in relation to when I might enjoy food again. It saddens me that I can’t remember the watery crunch of romaine lettuce in a bountiful, fresh salad. Likewise, the simultaneous texture-taste of roasted turkey evades my food-deprived memory. In some ways, it’s like a part of me has died, and already I have forgotten its place in my life.

Honestly, I am no saint. I am no Pollyanna. I am not as consistent in my positive attitude as I wish I were. I’m not as well-adjusted as so many people want to think I am. But I pray that, with time and the Holy Spirit’s help, I will become more and more adaptable, agreeable, and unflappable.

In the meantime, I’ll just have to be honest, I guess. And whatever perfection may be possible in this life will come later.

How compliant are you?

Do I have to answer that? Let’s just say that I don’t know very many people who enjoy being on a leash (my husband and I don’t lean that way), and I am no different. I have to psych myself up to run a full 12 hours of TPN, but I make sure I do that at least once a week. Since I work 10-hour days, I usually get about ten hours in on work nights, and do the full runs on my days off (when I can sit in my recliner and thus avoid those fabulous [IV] line dances).

Are you able to eat anything at all?

Yes. My four food groups are decaffeinated coffee, hard candy, oyster crackers, and broth. Those are generally the only things I can tolerate, though still in small quantities. When I do “splurge,” I enjoy other kinds of crackers, baby food

(Hawaiian Delight is my favorite), cream cheese, and chicken soup with rice. HOWEVER, those are almost always vented from the g-tube at some point post-ingestion. I have learned recently that if I make sure it’s totally liquefied before I swallow, I can eat a few other treats like chocolate and such. Adding extra liquid to the mastication process is crucial to being able to use the g-tube for releasing what won’t go through. I always have to be conscious of ho

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thoroughly I am chewing—one sloppy swallow can cause a whole lot of misery if I’m not careful.

What caused your gastroparesis? Is there hope of your stomach ever functioning again?

My gastroparesis is idiotic—I mean idiopathic. There’s no obvious cause. It pounced on me suddenly nearly four years ago after a long day of physical labor, and no one knows why or how (see “Intro to Jenn & GP” for the details). For awhile the doctors connected it to my (long distant) history of anorexia, but the more time that goes by and as we learn more about my body and how it has and hasn’t functioned since my childhood, it would appear that I have had some

sort of neurological dysfunction my entire life, and my two brief (but severe) stints with eating disorders may have simply triggered the neurologic dysfunction first with my stomach, then the rest of my GI tract. What we do know is that I have a nonspecific somewhat progressive autonomic failure—the regulatory systems within my body just don’t work correctly (body temperature, heart rate and rhythm, smooth muscle function, reflexes, blood pressure, sleep cycles, and other “normal” patterns), and each time I get seriously ill (usually bacterial infections as opposed to viral),

something else goes hooey—sometimes permanently, sometimes temporarily. The most recent one was when I contracted a Clostridium difficile (intestinal) infection, and two notable changes occurred, one permanent, one temporary. First, I stopped sweating (right in time for our Grand Canyon rafting trip), but that gradually came back. Second, the diarrhea caused by the infection never cleared up, indicating that somehow the nerve processes in the smooth muscles of my bowels were permanently damaged, and now they don’t respond to normal stimulation.

As for hope of function returning, it’s not terribly likely. None of the permanent changes I’ve experienced with the neurologic problem have ever spontaneously resolved. The sweating did return, but it isn’t normal. Now I only s

weat in two places: my upper lip, and from the waist down (I get horrendous leg sweats at night that are particularly profuse) and I often overcompensate when I am hot, so my temperature drops to 96° or sometimes a little lower. So while I have regained the ability to sweat, my body isn’t exactly very good at regulating any part of the process. In short, I’m not holding my breath for my stomach function to return, and even if it did, I would still need TPN due to the intestinal failure and lack of absorption of what I do (attempt to) digest.

What else do you know is not right with the way your body works? Any other

underlying or overlapping conditions that complicate things?

Of course. I don’t know anyone who only has one thing wrong with them! But since you asked, in addition to gastroparesis and general GI failure, I have a nonspecific progressive autonomic nervous system failure; advanced osteoporosis; vitamin D deficiency; chronic anemia; fibromyalgia syndrome; migraine headaches; episodic vertigo; a stage four sleep disorder; weak fingernails; myopia; dry patches on my elbows and knees; creaky joints; tinnitus;

recurring tendinitis in my wrists; and limp, lifeless hair. But other than that, I’m perfectly sound.

Are you on a lot of medications?

Define “a lot.” I have fourteen active prescriptions at my local family-owned drugstore. (No—not MY family, but as much time and money as I spend there, they should adopt me as their poster child.) I have two for nausea, Zofran (ondansetron) and Ativan (lorazepam); Lidocaine (xylocaine) jelly for my tube sites; Calmoseptine ointment for my tube

sites and my poor over-worked bum; Prozac (fluoxetine) which I’ve been on for a decade; Prevacid (lansoprazole) for excess stomach acid; Remeron (mirtazapine) for a stage four sleep disorder; tincture of opium for diarrhea; ferrous sulfate elixir for iron supplementation; Maxalt (rizatriptan) for migraines; Boniva (ibandronate) injection for osteoporosis; and Vicodin (hydrocodone) elixir, Roxicodone (oxycodone) liquid, and Dilaudid (hydromorphone) tablets for different degrees of pain. A walking pharmacy.

Do you ever crave foods that you can’t eat?

You bet! I have seasonal cravings, and I’m not sure why. In the spring I crave sushi—California rolls (teppa maki) with that perfect combination of wasabi and soy sauce. In the summer I crave Mexican cuisine—shredded chicken with the chunkiest medium-hot fresh salsa, with plenty of refried beans loaded to the hilt with sour cream and homemade

guacamole. Add in a thick, chewy flour tortilla, and I’m in heaven. Winter is really the only time I crave meat—mostly the things I never had very often anyway, like New York steaks and prime rib. But I also crave a well-grilled chicken breast (a staple in my weight-watching days), hearty beef stews (I made some phenomenal crockpot soups in the years before the illness—I was becoming quite a good crocker), and barbecued anything. In the fall I crave fresh fruit and vegetables. I grew up on a small farm, and we had a large vegetable garden as well as fruit trees and berry bushes

from which we were allowed to snack any time of the day. I still crave carrots, pulled right up, rinsed with a garden hose; raspberries and blackberries straight from the vine; yellow delicious apples right off the tree; fresh corn on the cob; raw peas; vine-ripened tomatoes… Those are all pieces of my identity that I cannot reclaim.