It’s been a while since I’ve posted a personal update and I have quite a bit to share. I’ve been getting a number of messages lately inquiring about my progress with the gastric neurostimulator (a.k.a. gastric pacemaker), so I’m going to start there. I’ll cover everything else that’s been going on, including my 3-week stay at the Mayo Clinic this summer, in a subsequent post.
Both the frequency and severity of the nausea, pain and vomiting are much improved with the new device. … While I cannot say that the Enterra device has allowed me to eat/live/feel completely normal (yet!), all in all, things are much improved and I’m very grateful.
That’s still pretty much true. In fact, while I was at the Mayo Clinic in July, my doctor turned my stimulator off for four days. While it wasn’t intended as an experiment, the device simply needed to be off for two diagnostic tests, it proved exactly how effective it has been at reducing my symptoms. From the time it was turned off until the day after it was turned back on, I was constantly nauseous. I couldn’t sleep. I didn’t want to eat. I quickly remembered how all-consuming the nausea used to be.
While it was a miserable few days, I’m actually glad I had the experience. I’ve been struggling with frequent flare ups over the last several months and I was starting to question whether or not the pacemaker was helping. I can now say without a doubt that it’s providing a great deal of symptomatic relief.
Despite the way it has been depicted by the media, the device is absolutely not a cure for gastroparesis. It’s a symptom-management tool. It has significantly alleviated the constant nausea and stomach pain that I used to experience. That’s not to say I never have nausea or pain, but it’s nowhere near as frequent, severe or long-lasting as it was prior to surgery. I’m also sleeping better than I have in years; even when I don’t feel well, I can sleep through the night now. In addition, I’ve gained some weight and overall my body seems to functioning better.
All of that said, I still have symptoms on a daily basis, including severe fullness, bloating and regurgitation. I cannot eat a normal diet, though I certainly have a little more wiggle room than I did prior to surgery. Surprisingly, there’s a bit of a downside to that extra freedom.
Without the constant nausea, I have more of an appetite. And because food makes me less sick and for a shorter amount of time than it did before, I’m more adventurous. Both of those are good things, of course, except that there is a very fine line between safe and not safe and one bite too many can result in agonizing fullness, pain, bloating and vomiting. Basically, it’s easier to get myself in trouble now!
It took some trial and error to learn that while I can tolerate a little more fat and fiber due to the decreased nausea and pain, I still have gastroparesis and food digests just as slowly. That means I have to keep careful track of how much fat, fiber and overall volume of food I’m consuming and consistently stay within my personal limits.
Note: I think it’s worth mentioning that my small bowel and colonic transit are both markedly delayed now and that is most likely contributing to my overall symptoms. I imagine if that weren’t an issue, I would notice an even greater benefit from the stimulator.
Bottom line? That gastric neurostimulator/Enterra Therapy doesn’t work for everyone. It’s not a miracle and it’s most certainly not a cure. But after having the device for eight months, I can honestly say it’s the best thing I’ve tried for symptom management and I’d do it again in a second.
Note: I’ve received several messages asking how much swelling is normal, so I’m including photos from the first several weeks post-surgery. As I mentioned in my first post-surgery post, I had a ton of swelling but it wasn’t an issue in the long run. I didn’t have nearly as much pain after the second surgery as the first one. After the first surgery, I couldn’t stand up straight for several weeks. Based on the number of concerned emails I get, I really don’t think that Medtronic or the surgeons are doing a proper job preparing patients for how they will feel after the surgery. Of course, I encourage anyone who is concerned about their own pain, swelling, etc. to talk with their doctor.