Personal Update: Seven Years
Seven Years Later and I'm Still Learning!
I've been learning how to manage my own gastroparesis symptoms since I was diagnosed more than seven years ago. Since then, I've also heard from several hundred other people with GP, many of whom I've helped to better understand and manage their symptoms. Despite all of that experience, I'm still learning new things about this condition on a regular basis.
This week was especially informative for me. I had an appointment with my motility specialist, the very knowledgeable and good-natured Dr. Brian Lacy at Dartmouth Hitchcock Medical Center. I've been seeing Dr. Lacy for about six months. I still have a doc at the Mayo Clinic but needed a specialist "closer" to home. (Plus, I'm a Dartmouth alumna and happy to have an excuse to visit campus now and then!)
2019 Update: Dr. Brian Lacy is now practicing at Mayo Clinic in Jacksonville, Florida.
In terms of a personal update, I'm doing very well. Despite, or maybe because of, the 6 miles of walking I do daily, I've maintained the 10 pounds I gained after having the neurostimulator placed about 16 months ago. My symptoms are well-controlled with the current device settings. I'm using Zofran as needed, though infrequently, to manage nausea. My diet now includes 5 servings of fruits and veggies a day in the form of smoothies, purees and soups. Overall, my diet is still limited, and I have occasional bad days, but I feel healthier and more vibrant than I have in a very long time.
Three weeks ago, I started a new medication call prucalopride. Prucalopride (Resolor) is currently available in the UK, Germany and the Netherlands for the treatment of chronic constipation in women. Studies (like this one) have shown it to be both safe and effective. I've already noticed a drastic improvement. In terms of side effects, I've been more nauseated lately, which is likely due to increased intestinal contractions, but it's mild and I'm willing to tolerate it in light of the benefits! (Note: prucalorpride has been studied in relation to gastric motility but found to have no effect.)
Okay, enough about me. On to the real reason for this post. During the appointment, I learned a few interesting tidbits that I've been anxious to share:
The relationship between symptoms like nausea and gastric motility is controversial, but in Dr. Lacy's opinion, they're not related in the way we think. Most of us believe that we feel nauseous because we don't digest our food properly, but the root of our distress may be something else altogether. Dr. Lacy explained that nausea is a sensory issue, whereas gastric emptying is a mechanical issue. That's why pro-kinetic treatments (like Reglan) don't necessarily provide symptomatic relief. It's also why the severity of gastric dysfunction often doesn't correlate with the severity of symptoms. Dr. Lacy mentioned that he has patients with next to no motility who don't experience any symptoms. He also has patients with such severe nausea and vomiting that they can't get out of bed with only minimally delayed or even normal gastric emptying rates. This is obviously a complicated concept and raises a lot of questions in terms of symptom management, but to me it's fascinating "food for thought."
In my books and here on the blog, I've told you that eating non-GP-friendly foods will not make your gastroparesis more severe. I asked Dr. Lacy to confirm this and he did. In fact, he told me that even if I ate a Bacon Double Cheeseburger, I wouldn't be doing my myself any real harm. Obviously I'd likely experience a whole host of very unpleasant short-term symptoms, but no long-term effects. So we should all feel free to experiment without the fear of permanently making things worse.
Constipation slows gastric emptying, even in those with normal motility. That wasn't news to me, but I hadn't heard of any real "proof." Dr. Lacy told me about a study performed several decades ago that involved a group of medical students. First, their gastric emptying rates were tested. All were normal. The researchers then made the students constipated for a week (I didn't ask how...). At the end of the week, the gastric emptying test was repeated. The results showed a measurable, though small, delay in gastric emptying. More proof of just how advanced the signaling system in the gut, and between the gut and the brain, really is. What does that mean for us? If your stomach is slow, constipation can make it a little bit slower. If you're constipated and you can alleviate that condition, your gastric emptying rate may increase slightly.
Noting that I'm nearing my 30th birthday, Dr. Lacy asked whether my husband and I plan to have children. We do and it's something that I've been concerned about in relation to both GP and the neurostimulator. Dr. Lacy echoed what I've heard from other doctors, namely that some women with gastroparesis feel better while pregnant and some feel worse. Either way, he promised we'd make it though. The really good news is that pregnancy is not only possible with the gastric neurostimulator, but apparently quite safe. Dr. Lacy has had two of his own neurostimulator patients successfully deliver healthy babies and he estimates there have been about 100 such cases nationwide. So long as the leads have enough slack to stretch as the belly grows, things should be fine. He does recommend stopping all prescription medications, however, so the Zofran and prucalopride will be out when the time comes.
As we all know, there's still a lot to untangle when it comes to understanding functional motility disorders. I'm constantly learning, both from the medical experts and from all of those I hear from (each the expert on our own body), so I'm hoping that the info above will spark some discussion.