How beautiful is Dartmouth? Especially this time of year. One of the perks of having Dr. Brian Lacy as my doctor is that I get to visit the College whenever I go to see him, as I did earlier this week. I was diagnosed with gastroparesis the year after I graduated from Dartmouth, and it’s always a bit odd to think about what life was like back then and the plans I had laid out for myself. What’s that saying? We plan and God laughs?
By the way, I adore Dr. Lacy. If you are looking for a motility specialist, I don’t think you could do any better. He is unbelievably knowledgeable about all things motility-related. Yet, he has zero ego. He’s open to outside-the-box thinking and he welcomes questions. In fact, he seems to really appreciate proactive patients who are educated about their condition. He’s also very good-natured and compassionate. He treats me like a person rather than a condition.
Okay, so that’s my plug for Dr. Lacy. If you go to see him, tell him Crystal sent you. ;~)
As for the appointment I had this week, it was a check-up — both for the gastroparesis and chronic constipation. Overall, I’m doing very well and together we identified a number of factors that have likely contributed to the improvement I’ve seen over the last couple of years:
- The gastric neurostimulator: we increased the settings in April and again this week. At this point, the device has decreased the nausea so significantly that I’m only using Zofran about twice a month. (Other than during flare ups.) Pretty amazing considering that used to be my main symptom.
- Managing constipation: since April I’ve been taking a medication called prucalopride to treat the slow transit constipation. The results are quite dramatic. I’ll spare you the details but suffice it to say I now take only 6 Ducolax per week instead of 24. As Dr. Lacy explained at my last appointment, chronic constipation not only exacerbates bloating, fullness, and nausea, it also further delays gastric emptying due to feedback mechanisms within the gut.
- Time: Dr. Lacy believes that idiopathic GP can resolve over time, though it may happen very slowly. I believe this, too (I’ve seen it happen). His point, which I want to emphasize to all of you, is that the reason my body has been able to get even a little bit better over time is that I didn’t have any “crazy surgeries.” I get a lot of emails from people asking about various surgeries as a means to alleviate GP symptoms — gastric bypass, the gastric sleeve, etc. In my opinion, removing or surgically altering an organ to treat a condition that you don’t know the cause of and may resolve on its own over time doesn’t make a lot of sense. (These surgeries have actually been the cause of GP in some cases!)
- Self-care practices: I carefully control my diet and pay close attention to the lifestyle choices I make. I eat in a way that allows me to both manage my symptoms and maximize my nutrition, even though that means sticking mostly to soups, smoothies, fruit/veggie purees, and Orgain. I take appropriate vitamin/mineral supplements. I walk several miles every day and practice regular meditation. I try to manage stress (though that’s something I still struggle with) and I take advantage of complementary therapies such as craniosacral therapy and biofeedback to augment my medical treatment. I also think my outlook on the situation plays a role.
(By the way, if you’re not sure what I mean when I talk about a “comprehensive management plan,” mine is a pretty good example.)
With all of that out of the way, we moved on to the topic that I was most anxious to talk about. While the appointment was technically a check up, my primary intention was to ask about pregnancy and gastroparesis/chronic constipation. My husband and I have decided that we’re ready to start a family but my health issues obviously complicate things. While this topic is a bit personal, I’ve decided to share it because I know there are many of you in the same boat.
In terms of the gastroparesis, plenty of women have gone through pregnancy after being diagnosed with GP and delivered healthy babies. It’s not always easy symptom-wise and obviously nutrition is a big concern (there are supportive measures that can be taken, if necessary). I definitely think that my background in nutrition, the gastric neurostimulator, and the symptom management plan that I already have in place will be helpful in these areas. Plus, Dr. Lacy reiterated that some women actually get better during pregnancy. (Unfortunately it’s impossible to determine in advance whether or not that will happen.)
In terms of the neurostimulator, Dr. Lacy has experience with patients who have gone through pregnancy with the device and he hasn’t seen any complications. Though there is no official recommendation from Medtronic (the device has not been studied in pregnant women), there doesn’t seem to be any concern about it harming the baby or otherwise impacting pregnancy, even when left on. I talked with my surgeon at the Mayo Clinic and he said that the wires are plenty long enough to stretch as the belly grows and he doesn’t anticipate any issues.
The biggest concern, for me anyway, is the slow-transit constipation. Dr. Lacy is of the opinion that women should not take any medication during pregnancy, if at all possible — especially not for the first three months. While there’s no evidence that prucalopride causes birth defects, there’s also no evidence that it’s safe during pregnancy. The Ducolax also needs to be avoided since it could possibly cause contractions of the uterus. So I’d most likely have to navigate pregnancy without medication for the constipation (other than Miralax and laci le beau tea, which I could possibly use every few days).
Obviously given the severity of my constipation and the way it affects my GP symptoms, I’ll likely be more symptomatic and probably quite uncomfortable, but Dr. Lacy is completely supportive of my desire to have a baby and doesn’t see any reason why I shouldn’t get pregnant. So we worked out a plan. Again, I’ll spare you the details, but Dr. Lacy helped me figure out when I have to go off the medication in order to try to get pregnant and when I can go back on it if I am not pregnant. It’s going to be a bit of work and I understand that my symptoms will likely flare up while we’re trying and then for the duration of the pregnancy, but I’ll do my best to manage it, knowing it’s only temporary, and it will all be worth it in the end!
So, that’s the update. The next several months are likely to be challenging, but I’m excited and optimistic. Here’s to making plans!