Hi. My GP was diagnosed in 2009 (but I had symptoms as far back as 1993) and has flared up since January 2012. I'm considering getting the gastric neurostimulator (GES) implanted and wondering if anyone has experience they can share. I asked Medtronic if the Enterra system interferes at all with an insulin pump and/or CGMS and they had no specific advice to offer and told me to discuss it with my doctors. My surgeon doesn't appear to think there will be interference but just in case, recommends trying to keep the devices on the opposite side of the body. (Great for site rotation, right?) I have very limited site options right now due to all the weight loss my GP has caused, and am wearing the sensor on my arms only at this point.
My other concern was exercise. I joined a very vigorous fitness class which seems to help with stomach motility as well as increase my appetite so I can eat more food. I met with the surgeon Friday and he says he would allow me to continue the class (with a minimum of 3 months off for healing) as long as I don't get hit or kicked (mixed martial arts class) over the implant and wires. Anyone out there have the GES and do vigorous exercise? Any issues with that?
Finally, just had a new question I didn't think of when I saw the doc. Pecautions have to be taken when around a dentist's drill. Anyone know if you have to be careful around the drills used for tattooing ifyou have a GES? I have been holding off on my next tatt in hopes my stomach feels better and I lie on the table more comfortably, but maybe I can't wait...
I got the Medtronic pacemaker in 2005. First off- it saved my life! I weighed about 80lbs, unable to eat and throwing up most of the time. 6 months after the pacemaker I weighed 100lbs and now am stable at around 115. I have never had any issues with my pump (animas) or CGM (Dexcom) no matter where I put the sites on my body (i.e. opposite side of pacemaker does not matter for me). I also exercise quite a bit because I also find it helps with motility. I do boot camp classes,spin, run, swim, zumba- never mixed martial arts, but I would assume that as long as no one kicks you right over it you would be fine (I actually have been kicked in the stomach though- with no real issues). With exercise, the biggest thing my doc told me to watch out for was 'twisting motions". So in yoga, I have to be careful because intense twisting can cause it to shift in your stomach- which you can kinda feel, so if I start to have a twinge I knew I twisted too far. But really have had no issues with it at all- never even heard of the dentist thing and I just had a crown put on. I don't have any tattoos, but I guess it would depend on where you want to get a tattoo..
I have a similar story to Sarah. The stimulator saved my life and my sanity! I had a PICC in, could only eat tiny amounts of baby food, constantly in the hospital, etc. till I got it implanted last November. I have gained 25 lbs, can eat a big variety of foods, and have been able to go back to work/life, etc. There are still flares and I still have to be careful with my food.. but in general, it's amazing and I believe worth trying!
I'm about to return to the pump but haven't had them at the same time. I do wear the dexcom cgm and have no interference issues. My docs said there are no issues, just don't put them in the same spot because you don't want to risk the needle hitting the device.
For exercise... I'm hoping I'll still get better - and it's hard to tell because i deveoped an incisional hernia 4 months after my surgery. So really I'm not that far out from recovery. But I do have trouble in certain exercise I used to do - things that are really bouncy like zumba after too long I'm sore. For hte most part, I run, kayak, dance, and have a pretty normal life. I tried a belly dance class once... dumb idea, I lasted about 10 min w/ the pain. And agreed with Sarah taht you need to watch out for twisting.
No issues with dentist and don't know about tattoo- though I imagine as long as it's not over the leads or the device you'd be fine.
A great blog with details of getting and living with the device is here (though she doesn't have diabetes so it's not quite the same perspective) -http://livingwithgastroparesis.com/
Thanks, Katie. My sister found Crystal's blog for me and I found her books on GP diet very helpful. I have to schedule a current gastric emptying study before we submit paperwork for the Enterra device/insurance coverage, and don't really want another surgery (3 major surgeries a couple of years ago for other issues) but I also don't want to start missing work or lose more weight or get even weaker. I'm lucky that I don't vomit and I think that's what keeps me out of the emergency room. I'm glad to hear that you can still participate in your activities. That, plus getting my doc's okay, makes me feel much better about the idea of getting the implant.
Thanks so much! I was so worried about the exercise part after reading the Enterra manual. I know at this point that the need to eat is more important than exercising, but I still want to have some options and have a real life! And I'd prefer the Enterra device over feeding tubes or TPN... I also wear the Animas and Dexcom, so glad to hear you haven't had any issues. My surgeon didn't seem to think they'd cause a problem. I'll have to ask him why the manual says dentist drills can cause an issue. The surgeon says it's strong magnetic fields that cause problems.
I think it has to be a VERY strong magnetic field- so drills are ok. The only time I have to be careful is airport security, and I usually get a pat-down or go through the x-ray machine if they are available. But no metal detectors at the airport!
I was also on tube feedings and TPN a lot and life is SO much better now- haven't had one since the surgery! My life is pretty normal now- I do have a few 'attacks' a year, but nothing terrible. Exercising has helped a lot and I even was able to finish a 1/2 Ironman 4 years after my surgery and do tri's and road run/cycle races every summer.
Good luck, I hope it helps you!
Thanks, Sarah. Right now I already get patted down at the airport because of the pump and my Glucerna. The metal detectors would be the thing I have to remember. For a while, erythromycin, massage, acupuncture and exercise were helping a lot, and now they're just helping sporadically. I wish there was some kind of a cure! But if the GES can keep me healthy enough to avoid tube feedings and TPN, I guess I'm probably willing to try it. I'm tired of having 2 or 3 or 5 hypoglycemic events every day and worrying about job performance and lack of energy.
I know that success is different for everyone, but I was at the same point you are. I needed to eat and was worried about my future (holding a job, etc). I had tried everything else and this was kinda my last resort. While I am not saying my life is completely normal, it is definitely a lot better than it used to be. I get nauseous every once in a while, but not to the extreme that it used to be. I saw your reply to Renka and you might want to tell your friend at work this too- my doctor warned me when I got the implant that I wouldn't magically be better. It takes some time for your body to get used to the device. I didn't get much relief until about 6 months after the surgery and was started to feel extremely better after about 1 year post-implant. You definitely have to be patient.
Thanks, Sarah. I had my latest emptying study on Friday and results are showing even more delay than 2009, but I knew it would be severe based on my postprandial BG results these past 8 months (and my need to combo bolus over 4-5 hours for mini-meals). I am still thinking and waiting and taking one day at a time... But it's been good talking to the surgeon and with the DOC (ha, the doc and the DOC) and getting real stories instead of just reading the Enterra manual. And my ribs hurt from Sunday's class, so Renka, I will be careful of the MMA! Maybe I will have to take up Ironmans. :)
Well keep me posted if you don't mind! It's hard to find people with GP who exercise as much as I do so it would be nice to share stories!
I haven't been to the gym for over a week because I have no energy at all. Told the surgeon's office to go ahead and get insurance approval for the stim, which wouldn't get implanted before Nov. I am conserving my energy for work, right now. I keep reminding myself that I will still be able to do the things I hope to do, it's just developed into a different timeline with perhaps some different variations and twists and turns.
That is definitely one thing I have learned and had to accept over the years with gastroparesis. Sometimes you just have to roll with the punches! I have had to modify my life at points and things may take longer than I had planned because of unexpected hic-cups, but just know that you are not alone. While you may not follow the path you consider 'normal'- that is okay! At least you are doing everything you can, and that is the most important- never give up! Hope all goes well and please feel free to touch base, let me know how things go, and if you have any more questions!