Gastric Pacemaker: 2 Months & 3 Cupcakes Later
I can’t believe it’s only been eight weeks since my second gastric pacemaker surgery. So much has happened since then. I attended the DDNC, my health coaching career has really taken off, and I’ve started working with Dr. John Douillard (more about this soon). I’ve made some great strides and had a few set-backs, but overall I’m really happy with how things are progressing.
Both the frequency and severity of the nausea, pain and vomiting are much improved with the new device. Instead of feeling sick all day, every day, I’m now having more good days than bad ones…and even days when I don’t feel sick at all!
It does seem that I have flare-ups every 2-3 weeks, during which everything stops moving and the regurgitation and stomach pain return. On the upside, while I feel very full during these flare-ups and have to tweak my diet, nausea still isn’t much of an issue. That alone is a huge relief since it allows me to sleep through the night.
While my diet is still fairly limited day-to-day, I am experimenting. Peanut butter & jelly and almond butter & honey on fresh, toasted bread have become staples in my daily diet. I’ve also found that gnocchi settles well. I’ve even been able to add in some true treats here and there. Things like french toast and…cupcakes!
Yes, I’ve had cupcakes (from the amazing Sugar Mountain Bake Shoppe) on three occasions now and I’ve found that the key to minimizing symptoms is proper planning. So long as I don’t eat several hours before the cupcake and I limit my fat intake more than usual the rest of the day, I do just fine. Two of the times I didn’t feel so hot a couple hours later (poor planning on my part), but a Zofran and a good nights sleep took care of it. No lingering symptoms. Thank you, Medtronic & Mayo!
So 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. I know that this is an on-going process, both in terms of finding the ideal device settings and experimenting with diet and lifestyle habits, so I’ve been keeping careful notes along the way. In doing so, I’ve learned a great deal about what works for me, what doesn’t, and what needs more attention.
Here’s what’s I’ve discovered:
- Stress, anxiety, worrying, etc. really do exacerbate my symptoms, especially stomach pain and nausea.
- Relaxation, meditation, and yoga really do improve my symptoms — both immediately and over time when I practice consistently (something I am becoming more and more focused on).
- While many GPers thrive on 6-8 small “meals” a day, I’ve found that I feel my best when I eat 4 or 5 slightly larger meals. But…
- The amount of food I eat, both at any given time and over the course of a day, is still the biggest factor in how I feel.
- I’m doing well with foods that are a little higher in fat, like nut butters, in moderation. (I’m excited to keep experimenting with this and I’ve added avocados to my to-try list.)
- The combination of my own dietary and lifestyle modifications, plus the Enterra device, and having the Zofran on hand for experiments gone wrong and flare-ups seems to be working well for me.
- Constipation is still a big problem, perhaps even more so with my increased food intake. Much of the nausea that I do experience now is related to either the constipation or the daily laxatives. I’m on the waiting list for the pelvic floor retraining program at the Mayo Clinic and adding that to the combo of remedies I outlined above can only mean even better results!
Related Posts:
You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
31 Responses to “Gastric Pacemaker: 2 Months & 3 Cupcakes Later”
Leave a Reply
I have a gastric stimulator and I too have had the stomach jumping or twitching. I have had mine almost 3 years. I have been told that I am just sensitive to the device. I am now wondering if it is the device that has the problem and not me. I get sick every day. It doesn’t matter what I eat or drink. How did you get someone to check into this?
Hi, Angela. I made a video, put it on YouTube and sent it to my doctor so that she could actually see how strong the muscle contractions were. When I described it, I don’t think she understood the extent of what was happening. She talked to Medtronic and everyone agreed that the visible twitching in conjunction with the fact that my symptoms had returned full force meant that something probably wasn’t working properly. At that point they agreed to an exploratory surgery, during which they ended up replacing the whole system.
With the new device I can still feel some “fluttering,” but it’s not visible and not nearly as strong. I asked Dr. Parkman about that when I saw him at the DDNC last week and he said that some people are more sensitive to the device and that may or may not go away over time. But as long as it’s helping, feeling the device in that way isn’t a concern apparently.
Has your doctor actually seen your stomach contracting? What do they say about your symptoms not improving? Have they tried adjusting the settings? Medtronic said that the jumping/twitching typically occurs when the voltage is above 6 and can often be resolved by switching to a different type of setting (i.e. higher frequency, lower voltage).
Warmly,
Crystal
I have had to drive all the way back to my doctor because the jumping was so hard. He keeps saying I am just sensitive to it. It is turned down very low. It still jumps but not as often, only a few episodes a day. It is not helping with the symptoms. They have adjusted it many times.
Have you gotten a second opinion from a different GI doc who works with the pacemakers? You might also try calling the patient services of division of Medtronic.
I have been to 2 doctors. I went to Washington DC and also a doctor here in North Carolina. I will try calling Medtronic. Thanks for all the help.
Hi Everyone, looks like I’m the only “Aussie” , Australian on board! I accidently found this website, and it was amazing to read responses and to feel that I was not alone with this awful diagnosis. I don’t have a stomach pacemaker yet, and after reading what some of you had to say, I’m not sure whether I’ll go down that path, as there seems to be more “con’s” than “pro’s”. Anyway, I had a endoscopy yesterday, and the results are as follows: Delayed gastric emptying (an extremely amount of large ‘old’ food was found mainly in my stomach, however they found some in the cup of the duodenum. There is a ?Monilial oesophagitis, and a request for PPI. Does anyone know what a PPI is and has anyone had an endoscopy report like mine. Will I have no choice but to have a stomach pacemaker from what I have told you? Any comments would be greatly appreciated. I have also asked to receive a newsletter from Crystal. Thanks a heap Crystal for setting up this website as it has put my mind at ease somewhat before I catch back up with my Gastroenterologist to discuss the endoscopy she did yesterday a little more in full. Kindest Regards, Jules
P.S. Sorry Guys, this is Jules from OZ again. I forgot to mention that I have started these two medications, Zoton and Motilium. Has anyone had any success from these meds at all? Jules
I had a gastric pacemaker implanted about 6 months ago. I think it saved my life. I have gained back 30 pounds and feel much better most of the time. I do have episodes of nausea and vomiting every 2 or 3 weeks, but before the surgery I was sick every 2 or 3 days. Now at least I have some strength to make it through the episodes.
My only concern now is that I have no doctor. My doctor left the University of Illinois Medical Center and moved to Tuscon. I feel abandoned. As long as I am feeling well physically, I guess I’ll be okay. Just don’t know what to do if something goes wrong.
Hi Patricia,
Thanks for sharing! I’ve had very similar results — I have flare ups every few weeks instead of everyday/every few days. While it’s not a cure, it’s certainly a huge relief. It’s allowing me to address nutrition issues, get proper sleep, etc. It was certainly worth it for me…both times!
Have you contacted Medtronic about a new doctor? They might be able to help you find someone who is familiar with managing the Enterra device. It’s probably worth doing sooner rather than later so that you have something in place in case you need it.
Good luck and I hope you only continue to get better and better! (Please keep us updated.)
Warmly,
Crystal
Hi, Jules! Thanks for your comments — I’m excited to have a reader from Australia!
Regarding the pacemaker, I would do it again in a second. It’s not a cure but it has made a significant improvement in my symptoms. I’d tried everything else (dozens of meds, liquid diet, Botox injections, etc.) and since it’s a reversible procedure with a pretty high success rate, I figured it was worth a try! Of course, it is surgery and it shouldn’t be rushed in to…but it’s an option to consider if you don’t find adequate relief from other treatments.
Regarding the meds, Motilium (domperidone) isn’t available in the US, but a lot of Americans order it from Canada or New Zealand. I know it’s helped a lot of people quite significantly. I’ve never heard of Zoton so I looked it up. It’s a Proton Pump Inhibitor (PPI). A lot of people with GP are put on some kind of PPI for acid reflux associated with the decreased motility. Basically, these types of drugs suppress the production of stomach acid so that when you do reflux your food or stomach contents, it’s non-acidic. It can be a double-edged sword in some circumstances since without stomach acid, digestion may become further impaired. I stopped taking a PPI two years ago and actually feel better now. It’s definitely an individual decision that each person needs to make after they’ve educated them self and talked with their doctor.
Good luck. Keep us updated!
Best,
Crystal
I was diagnosed with gastroparesis about 6 months ago and I seem to be going down hill pretty fast. My symptoms started about a week after I had a lipo procedure of the stomach and back flank area. Since that time, I have been hospitalized 15 times, 5 times since January 2010. I spend anywhere from 4-14 days in the hospital at the time. The nausea is horrindous, my stomach swells to the point if feels as if it is going to burst and the pain is awful. I do not have diabetes, which is one thing the doctors here keep telling me is unusual. I’m from a town in Alabama, I’ve seen GI doctors from Dothan, and UAB, I’ve had 2 different botox injections, I can no longer eat anything but full liquids and I am still nauseated. I came home from the hospital for the 5th time just this past Wednesday and I am so depressed. I have a pic line because they can no longer get veins for iv’s, I do have an appointment with Mayo Clinic in Jacksonville Florida, but that’s not until June. Is these emotions that I am feeling normal, could this whole thing have been caused from the lipo…I was such a healthy person up until then. In the past 3 months I have lost 30 pounds. I have tried the Donperidone, Donnatal, I’m allergic to Reglan, I drink MOM everyday, and GI Cocktail…..they tell me to stay off of pain meds, but how do you cope? I know I seem to be rambling but I am so thankful to have found a place where others have this condition and maybe you could help me. Thanks for listening.. Tammie/Alabama
Hi, Tammie -
I feel for you and I’m so sorry that you have to go through all of this. I think your emotions are completely normal — this disease can turn your entire life upside down very quickly, especially when it seemingly comes out of nowhere. Do your GI docs think it’s connected to the lipo procedure? Surgical procedures in the abdominal area can cause GP if the vagus nerve is cut or injured.
Are you GI docs well informed about gastroparesis? I ask because it’s actually not unusual to have idiopathic gastroparesis — it’s actually more common than diabetic gastroparesis! Hopefully you’ll get some better answers at Mayo. Going to the Mayo Clinic (in MN) was one of the best decisions I made. Are you on a cancelation list? I was able to get in early that way.
Hang in there! You’re not alone and there is hope…people DO get better. Always remember to be your own advocate – getting multiple opinions, searching for answers, and never giving up.
Hugs,
Crystal
Hi there everyone!
I just found this amazing place!!! I can’t wait to pruse through it more and educate myself even more!! Thank you Crystal!!!!
Just a note to Tammie: Your feelings are very normal. Depression and/or anxiety are very common to gastroparetics. It is one critical component that is often over-looked in the management of our disease since there are soooo many other ‘things’ to deal with. Please speak with your care team about healthy otions for managing the depression, anxiety and stress. I say ‘care team’ because my experience has been rather hodge-podge, but I have my own quasi-team and the nucleus, ironically, was my home health care nurse because I too had a PIC line. She saw me weekly and offered encouragement to seek help. For me, medications are NOT!!!! the answer. I learned to become my own advocate, to educate myself ~ especially in the pharmacological realm. There are an incredible amount of side-effects not ‘typically’ listed on the little info sheet that comes home from the pharmacy … so my hubby went on-line after we were tipped off by a doctor at Mayo in MN. READ EVERYTHING ABOUT YOUR MEDICATIONS, PLEASE!!!! Alot of the meds for depression and anxiety/stress really raise havoc and can hurt the GI tract, slowing the system down even more as it tries so hard to function. Pain meds, even tho I neeeeed them desperately, cause constipation and bloating for me, as stated ‘further down the page’ on most medication info and side effects sheets, if your pharmacy prints the majority of that info …. if … so do your homework before you put just anything in to your struggling body. I even found that the same med can be different from month to month because of the manufacturer and the fillers they use – each is different and those fillers can really throw ya for a loop. It took me many, many months to figure that one out … first it came thru journaling how I felt and then I noticed the difference in the pills, so I talked with my pharmacist and she told me about the manufacturers and their fillers. What to do with the depression and anxiety/stress without the doctors favorite little helper pills?? Cognitive behavioral therapy, personal meditation/stillness and nutrition. My body has enough to deal with, so more chemicals aren’t an answer … I found that I HAVE to keep a positive mental attitude!! It makes sense to me that gastroparetics have nerve issues and therefore our circuits need to remain as calm and happy as possible. One’s attitude truly does affect one’s altitude!!! I do alot of imagery, going to my ‘happy places and times’ when the pain, nausea (I call mine ‘The Heela Monster’) flares up horrifically — which is several times a day for me, but I “change the channel” on that as best as I can as fast as I can! The depression adds to the vicious cycle and blunts whatever normal functioning our bodies can do. Please, I urge you to, sounds cliche’, but Think Positive!! It’s not just a ‘nice thought or thing to say’, it’s seriously critical to your over-all health. It’s part of this crazy gastroparesis puzzle. I’m just now finding more people ‘like me’ that I hope I can learn from and share. Do you have a G-PACT in your state?? Hoping that will bring about more discussion, maybe even getting together for some support group meetings to talk. That’s powerful stuff – whether in addition to medication or on it’s own, we need one another and PMA (Positive Mental Attitude).
Sooo, how’s Your PMA today!?!?
Genuinely,
Connie Sue
I have been diagnosed with fatty infriltration of the liver. My question is,” should there be pain with this condition?” It is just a mild ache under my right ribsRib cage pain and goes around to my back. It happens within minutes after I eat. I do not consume alcolol at all, I am about 20 lbs. over weight and have lost about 6 lbs in the past 6 weeks. I am on a low fat diet. My doctor recommended “Weight Watcher” , but at this time I cannot afford it.
[...] had my second Enterra device for a little over eight months now. The last time I posted an update, I said: Both the frequency and severity of the nausea, pain and vomiting are [...]
Hi, glad to know about others with gastroparesis – it’s been an adventure! I was diagnosed a year ago, after being diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) and dysautonomia the year before that (resulting in dizziness, lightheadedness, fast heart rate, orthostatic hypotension, fainting episodes.) I’m on several meds for these conditions – domperidone, nexium, and dronabinol for the GP. I’ve lost nearly 40 pounds and am now underweight. Another difficult complication is my recent diagnosis with reactive hypoglycemia. If I take in too many carbs or any simple carbs/sugars, my blood sugar rises, insulin secretion surges too much, and my blood sugar gets way too low. Now, along with limiting fat and fiber intake, I have to limit my carbohydrate intake to 20 or fewer grams at a time, every couple of hours. So my dietary choices are further limited. My doctor has discussed the pacemaker with me, and my symptoms have been worsening lately – lots of nausea every day, so I’m thinking about it.
Who qualifies for this device, and does insurance usually cover it? Also, I am still trying to keep my job, and wonder how long I might be out of work. I’m really glad to be able to learn about this from the perspective of someone who has been through it!
[...] I sleep through the night, and I have a little extra wiggle room with my diet {I’ve even eaten a few cupcakes, this year!}. It hasn’t been a cure — I still have symptoms on a daily basis and [...]
My sister has been throwing up since March,They just found out her insurance dont cover the opperation.The Dr. said she will stay sick untill she gets it done.Is there any kind of help for her? She needs the stomach pace maker put in! Any kind of help PLEASE !!!! Thank you! Loretta Berry
Hi, Loretta. Enterra Therapy has been granted a Humanitarian Device Exemption by the FDA. You should appeal the insurance company’s decision on this basis — you will need to be aggressive and thorough. I had to appeal three times to get the surgery covered, but the insurance company ultimately overturned the denial. You must move quickly as there is only a certain window of time for appeals. I would recommend that you contact a lawyer or patient advocate to help you if you’re not sure how to go about all of this. Jennifer Jaff at Advocacy for Patients with Chronic Illness has helped many GP patients with these kinds of appeals (and won). http://advocacyforpatients.org/ Hope that helps!
Warmly,
Crystal
Hi All,
I am from a leading women’s magazine in Australia and we are looking for an Aussie currently dealing with gastroparesis who has had a pacemaker inserted and had positive results. We think more information needs to be shared about this condition and would love to have a chat. If anyone can help, please feel free to contact me via this message board and best of luck in the future to all dealing with the condition.
Many thanks,
Stacey
Stacey, thank you so much for your interested in sharing info about gastroparesis and the options available for those who have been diagnosed. I’ve shared your request on my FB page, as well. I hope that someone will contact you soon.
Warmly,
Crystal
hi crystal ,
its so great to hear that gastroparesis may finally be getting some more awareness here in australia, i have had gp for the past 19 years and have 3 children and am now pregnant with my fourth . i have tried most things including botox, pyloromyotomy, medication and diet etc . i am looking to have the pacemaker inserted through dr hebbard at royal melbourne hospital as soon as my baby is born and we are hoping medibank private will accept this as a humanitarian device . I do know there are 2-4 people who have had this device implanted successfullly using insurance to cover the cost but I am unsure whether they have had any improvements physically. I will do some more research and get back to you with names . Thanks again for being so ineterested !!!!!!
Hi Crystal,
I have had stomach issues for 4 years this past January and it all started after having a stomach bug. I was officially diagnosed in July 2011 and again February 14, 2012. I am confused about the percentage vs. my symptoms and what qualifies someone for the gastric stimulator.
After 4 hours, I still had 37 percent of the food left in my stomach. To me that does not seem horrible…but I am only able to eat thin crust pizza, pretzles, and saltines and my symptoms interfere with life every single day. I have absolutely no energy most of the time, but my doctor tested my blood and the results said I absorb enough of my food. I am down to 88 pounds (I’m only 4’11 but 88 is real low for me…I’m usually between 100-105).
I have tried Reglan and had negative side effects so my doctor took me off of it. I have tried Domperidone with no success at all and have been on a slew of antibiotics to treat small intestine bacterial overgrowth…and none of those have worked. I am on a very low does anti-depressant right now to see if it helps with the IBS…so far it’s only given me a little bit of energy every once in a while. After I took the Reglan I began having bad anxiety, so it does help with that too.
I’m curious about the gastric stimulator and what it takes for a doctor to suggest trying it. Is it percentage based, symptom based? No one seems to have these answers.
Thank you so much!
Julie
This is the most exciting news! More information is deinatley need to be spread sbout gastroparesis in Australia. I was diagnosed approximately 18months ago and within that time I lost over 10kg and now have a PEG/J tube. All medications and botox did not work for me. I am hopefully having the gastrIc pacemaker placed at the end of march ( fingers crossed) I am just waiting for approval from my health insurance! If there is any way that I can help spread the word of this invisible disease I am more then happy too!
Hi Stacy,
My name is Liat, I’m 20 years old from Melbourne, Australia and I had my gastric neurostimulator inserted at the beginning of 2011. I have left my email address with Crystal, and am more than willing to help with your research in any way that I can
Thanks,
Liat
Hello Stacy and Crystal,
My name is Liat, I’m 20 years old and living in Melbourne, Australia.
I had my gastric neurostimulator placed in early 2011 for worsening gastroparesis symptoms.
I have left my email address when I posted this comment. If there is anything I can do to help with your article, please let me know.
Thanks,
Liat
Hi All,
Oh thank you all so much for your help.
Crystal that would be great if you could let me know if anyone is interested in speaking to me. We are a women’s magazine, so we would probably need that person to be a young female.
I hope I don’t offend by mentioning this, but we pay a fee to anyone who speaks to us for their story, as well.
As I mentioned I think it is a really important condition to spread awareness about and I would love to speak to anyone who has had success with the gastric pacemaker.
Romy Wyner, are you in Australia? If you are, we would potentially talk to you after your procedure.
Have a great day everyone!
Kindest regards,
Stacey
I’m from Melbourne, Australia and i’m so happy to hear something is being done to raise a bit of awareness, it’s much needed! Was diagnosed in August last year(mine isn’t idiopathic but due to autonomic dysfunction), I don’t have a pacemaker in yet, but had a balloon pyloroplasty done in October last year, with a bit of improvement. Like the other Aussies, i’m happy to help out if i can!
Hi Stacey,
Yes I am from Australia and live in Melbourne! I would love the opportunity to speak out about this illness and spread some awareness.
My email is rwyner@hotmail.com if you would like to contact me personally!
Looking forward to hearing from you!
Romy
Hi Crystal & Stacie,
)
I’m 39 years from Bundaberg, Australia. I was diagnosed with gastroparesis 18 months ago and have had terrific success with the pacemaker. Had the pacemaker inserted 4 months ago and are now able to eat and are no longer tube fed and my symptoms of daily vomitting and nausea have disappeared. I would encourage others to persue this option. I know there are varying results with the pacer but any relief of symptoms is worth it! I am very happy to share my story with others and answer any questions anyone may have, my e-mail address is rikigroundstroem@hotmail.com.
Hope you are all having a great day. Enjoy your cruise Crystal. I’m planning to do the same thing this year for my 40th. Cheers.
Hi There,
This is Carolyn from Australia. Ive been reading Crystals blog since pretty much the beginning and am so grateful for her help in the beginning after my diagnosis. I had my Jpeg placed in nov 2010 as my weight fell to 37 kgs/I’m 1.7m tall. I’ve had my pacemaker for just over a year now. I’m the only patient out of approx 23 surgeries in aus whos health fund will not pay for it. Awareness would be grateful and I’m happy to help in any way. I could prob put you in contact with others too. A girl who had it placed years ago and is fantastic now may be willing to help if I contact her.
Smiles
Carolyn