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