Initiating a New Physician

Of all the bloody things to do, my gastroenterologist changed medical centers, and I had to start all over again with a new doc.

Damn it.

I admit I went into the first appointment a little naïvely; but the outcome was exactly what I wasn’t looking for.

First, my primary care doc has already been trying to whittle down my monstrous medication list to only the really necessary ones. Not that I mind this, but I’m constantly have to justify myself. “Yes, I really have that much nausea.” “Yes, I have terrible Restless Leg Syndrome.” “Yes, my stomach hurts that badly at times.” “Yes, I need that much Ritalin to stay awake.” Yes, I need medications to get me through the day.

But breaking in a new GI doc is excruciating. I’ve been having infrequent and untraceable severe abdominal pain, and I assumed it was merely “Dumping Syndrome” from eating too much sugar or fat. But apparently pain is not associated with that, so we got down to trying to find out the cause of the pain. Since it’s infrequent and comes on without a definite cause (other than ingestion of something, even small amounts) she ordered a CT scan to be done the next time the pain hits. How very convenient.

The next thing was about occasional diarrhea, which I also (it seems correctly) identified as Dumping Syndrome. I use tincture of opium to treat it, and it just so happens that the opium is the only thing that helps the abdominal pain as well. But she wouldn’t prescribe the opium without knowing the source of the pain, also noting that I take Miralax on a regular basis to regulate my completely motility-challenged GI tract. (Just FYI, there’s no danger of me becoming addicted to the opium; it is the most powerfully bitter and strong tasting liquid I have ever put in my mouth, and use it only when absolutely necessary.) Fortunately I still have several doses left until I’ll need a refill.

Now we get back to the nausea. I shouldn’t be having nausea because I don’t have a stomach. Well, I do have nausea—whenever I ingest anything—and it doesn’t seem to matter that my stomach is no longer with me. “Everything should be going right through—there’s nothing to stop it.” I KNOW THAT. There is no pylorus valve regulating the release of food into my intestines anymore, so everything—especially liquids—should flow right through. Unfortunately, liquids pose the greatest problem for me, requiring IV saline a few times a week to keep my hydration up (my kidneys are already angry with me). I can’t explain it; I’m just reporting what I know: my body and how it works (or, more aptly, doesn’t work). Her reactions made me feel she didn’t quite believe me, that I didn’t really have these symptoms to this extent. Eventually, I stopped talking unless she asked me a question.

Which was the next round of “Here We Go Again.”

“Did you ever try j-tube feeding?” Duh. I had a j-tube for four years; was on tube-feeding for four months before my GI tract failed—it’s all in my chart. “Have you tried supplemental drinks like Boost™ or Ensure™?” Of course I have—but the calories are 90% fat and sugar, and fat+sugar=Dumping Syndrome, completely aside from the nausea from daring to ingest something. “Liquids should be the easiest thing to process.” No further comment. “Do you ever vomit?” Fortunately, no. I offer a rare verbal answer to that one: “I did right after the surgery, but not anymore.” Why is it not surprising that I experienced nausea immediately after the surgery, but surprising that I am still experiencing it now? The plumbing is the same, right?

Then came the dreaded TPN talk. After learning that I had tried tube feeding and had had both a j-tube and a g-tube, she asked (again) why we didn’t continue j-tube feedings instead of TPN. “Because I couldn’t tolerate them. They tried everything, even the elementals, but I couldn’t tolerate them. They just went straight through me. I couldn’t even tolerate a 10 mL flush.” No comment from her this time. “So you had a gastrectomy. Did they remove the j-tube? “Yes; the goal of the surgery was never to get me off of TPN; it was to keep my port safe because my gastric tubes had been infected for over a year, despite being removed and re-placed.” To which she onerously replied, “The goal is always to get off TPN.” It was then that I knew I was in trouble again. All of my other docs have finally come to accept that I am permanently on TPN. We have tried everything. Even if I weren’t on TPN, I’d need my port-a-cath for IV nausea meds, because I’d be eating all the time. The goal of my gastrectomy was to remove the danger of infecting my port via the infected gastric tube sites. End of discussion. But now I have a new doc that wants to start from scratch and try everything all over again. As if after seven years of trying everything and seeing over 20 specialists, she’s going to solve the problem. I’m just not up for that. Only two of my clinicians have the goal of getting me off TPN: my new GI doc, and my hospital dietitian. No one else, even my Infectious Disease doc, has the lofty goal in mind anymore. They’ve all accepted it; why can’t these two?

Just to make it a little more clear why it would be nearly impossible for me to get off TPN and still have a life:

  • Because of my sleep disorder, I require at least 10-11 hours of sleep per night. That leaves me with 13-14 hours to eat enough to be healthy.
  • I’m supposed to eat six meals per day, a total of one cup of food each time, over ½ hour.
  • I’m supposed to drink 48 oz of liquid every day, up to 4 oz at a time.
  • I can’t drink anything for ½ hour before or after I eat.

Here’s just an idea of how my days would look if I tried to follow the post-gastrectomy diet with a 13-hour day:

TIME        ACTIVITY

  • 8:00        Wake up. Drink four ounces.
  • 8:30        Shower; prepare food
  • 9:00        Eat 1 cup
  • 9:30        No drinking
  • 10:00      Drink
  • 10:30      Stop drinking/prepare food
  • 11:00      Eat 1 cup
  • 11:30      No drinking
  • 12:00      Drink
  • 12:30      Stop drinking/prepare food
  • 13:00      Eat 1 cup
  • 13:30      No drinking
  • 14:00      Drink
  • 14:30      Stop drinking/prepare food
  • 15:00      Eat 1 cup
  • 15:30      No drinking
  • 16:00      Drink
  • 16:30      Stop drinking/prepare food
  • 17:00      Eat 1 cup
  • 17:30      No drinking
  • 18:00      Drink
  • 18:30      Stop drinking/prepare food
  • 19:00      Eat 1 cup
  • 19:30      No drinking
  • 20:00      Drink
  • 20:30      Get ready for bed
  • 21:00      Bedtime

Clearly, my life would be centered around food and drink. As a delivered anorexic, I can tell you right now that I don’t find the emphasis on counting calories and eating on a rigid schedule healthy or appealing. I’ve been on the food-obsession road, and it took years for me to find the way back to normal eating (before I got sick). I refuse to have my life dominated by food ever again.

Besides the eating six meals a day and drinking 48 ounces of liquid, there would be the constant nausea. Drinking is hard enough; add calories to that and the nausea scale increases dramatically. I currently eat once or twice a day—eating six times a day would push me past the limits of my nausea medications (which I’m supposed to be reducing as well).

And the biggest factor: where in that schedule do I get to have a life???? I’d have to prepare one-cup meals to take with me, as well as fluids for when I’m not eating. And it’s not like I can just eat anything—low-fat and low-sugar items are the only things my system tolerates, so planning a variety of meals would be a challenge, too. And I’d always be checking my watch to see if it’s time to eat or drink or not drink before eating. To get off TPN, I would literally be required to focus on food and drink every waking moment.

And I’m not willing to do that.

I know the risks of TPN, both short- and long-term. I know that my lifespan will probably be shortened, and Greg and I have discussed this at great lengths, and chosen quality of life over rigid food fixation.

My primary care doctor said I shouldn’t be too worried—that she didn’t make a big deal about the TPN in her rather lengthy dictation. That’s somewhat of a relief, though I’m fairly certain she’s going to try to get me to do night-time tube feeding to supplement my minimal daily intake. But I’m not having a tube put back in, and there’s no changing my mind on that. Removing my stomach was the only answer to getting rid of the infection-driven gastric tube sites and keep my port safe from the constant infections. I’m not going back to that, ever.

So breaking in a new GI doc is going to be a challenge. Right now I’m still anxious about her goal for me, but my primary is confident that she will be a team player, so there’s some encouragement there.

But of all the 20 specialists I have, why did it have to be the GI doc that changed? It seems like a cruel joke right now, but perhaps in time as she gets to know me and Greg better she’ll understand what quality of life means to us, and be able to respect that.

Here’s to hope…

About Jenn

While pursuing my literary and professional goals, I managed a severe form of gastroparesis (paralysis of the stomach) for six years, now complicated by full GI failure and a nonspecific autonomic failure of unknown etiology. In August of 2010, I finally had my stomach removed (total gastrectomy) to stop the 24/7 nausea and to lessen the risk of spreading infection to my central IV line (port-a-cath), as both of my gastric tubes (one G-tube in my stomach; one J-tube in my small intestine) were chronically–and extremely painfully–infected for longer than a year. I couldn’t possibly have survived the six-plus years of TPN (IV nutrition), surgeries, new (and unrelated) diagnoses, and being forced to go on disability without my amazingly supportive, encouraging, adoring, patient Care Partner and husband, Greg (married 1999)… Who reminds me of the unconditional, perfect love of God as shown through His Son, Jesus. My writing credits include The Da Vinci Code Adventure and Two Roads Through Narnia as well as several movie review compilations.

Not all of the entries are health-related. My conditions have finally settled into a quasi-normal routine. There will be ebbs and flows, but I am still active, and plan to live as long as I’m alive.

This entry was posted in Autobiography, Health Updates, Journal, Narratives, Reflections. Bookmark the permalink.

0 Responses to Initiating a New Physician

  1. Jan DeRoest says:

    In health news for me, I saw the second opinion osteopath guy. This morning I saw the gut surgery guy that the second opinion osteopath guy wanted me to see (to schedule a colonoscopy). The gut guy said I didn’t have to have one, and there wasn’t really anything anyone could do about my GI stuff anyway. Either eat more or less fiber. Whatever works. But I have to come back in a few weeks for a follow up anyway. No one seems to get the fact that I’ve been disabled for over two years now because nothing works.

    On the psych front, my psychiatrist (of 5+ years) actually spoke with the Seattle ECT guy’s assistant, who said the only thing that doc would do is say yes or no to ECT. He wouldn’t do it, or anything else, just say yes or no. That’s exactly the same thing she told me a few weeks earlier, but now the psychiatrist believes it and has given me permission to cancel my appointment with that guy….

    But there’s another psychiatrist in Seattle who is apparently world-renown, who used to be on staff at UW, etc. He may or may not be accepting consultations, but now she says I have to schedule an appointment with him.

    She is still pushing for ECT, 6-12 times, 3 times a week outpatient but the only guy in the entire Pacific Northwest that still does it is at OHSU and I worked with him (as a colleague) back when he was a resident. That actually seems to carry more weight with her than the fact that I had ECT in the past that was was unsuccessful.

    She said I could still try for Mayo (in Rochester) as suggested by my PCP and a million other folks, but they would only consult on one thing – either GI or Psych, not both. And as far as psych goes, all they will do is an outpatient assessment and an opinion as to whether or not I need inpatient care.

    Last, in researching some of this stuff for my docs, I ran across a relatively new procedure – the vagus nerve stimulation implant. The research looks good, but the closest place doing it is the Univ. of Michigan. It works like a heart pacemaker except with the vagus nerve instead of the cardiac nerves. I asked my psychiatrist about it, and she said not to even look into it, because it’s too drastic/invasive. She said if I did that, there might be wires in my chest permanently, keeping me from ever being a candidate for an MRI again.

    I bit my tongue so I wouldn’t say something like, “YOU want this treated more aggressively, YOU want me to trollop up and down the coast to find someone who will take me off your hands, and YOU are the one pushing ECT as less invasive than anything else, despite prior failure. WTF????? What’s a few fried brain cells compared to the possibility of no longer being a candidate for some future diagnostic imaging procedure?

    At my last appt with my PCP (Gary was there too), she said she just felt like a sounding board. That I had been unwilling to follow through with recommendations – hers and my psychiatrist’s (they spoke on the phone about me), so of course she was there if I needed anything, but otherwise don’t call.

    And to think I used to have an actual life. Interestingly, I found a couple of grey hairs on my head and I liked it! It meant I was getting closer to being done with this whole human life thing. Oops – gotta’ go – really! Take care, love you.

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