My Experience with Gastroparesis
I was diagnosed with idiopathic gastroparesis in 2004. My initial symptoms were reflux, stomach pain, fullness, and nausea after eating. Though my symptoms worsened over the years, it’s hard to know how much of that had to do with the gastroparesis itself and how much was due to the stress that living with this disease puts on the body and mind.
I’ve tried just about every treatment imaginable, both traditional and alternative, including: Botox, Reglan, Misoprostol, Domperidone, Zelnorm, Nexium, Remeron, BuSpar, Amitiza, Zofran, Erythromycin, Align, Iberogast, acupuncture, craniosacral therapy, chiropractics, cleanses, detox, digestive enzymes, HCl therapy, low-fat/low-fiber diet, low-carb diet, gluten-free diet, liquid diet, meditation, yoga, and stress management. Of these, I’ve found dietary changes, acupuncture, and stress management to be the most beneficial.
On September 16, 2009, I had a gastric neurostimulator implanted at the Mayo Clinic in Rochester, MN. I noticed significant improvement in my symptoms for the first 5 weeks. After that, I started experiencing frequent abdominal twitching, shocking sensations, and worsening symptoms. By the end of 2009, my symptoms were back to pre-surgery levels.
On January 19, 2010, I had exploratory surgery to investigate the problem. My surgeon determined that the device was malfunctioning, shorting out every 5 seconds. The entire system — neurostimulator and leads — were replaced. I’ve had a working gastric neurostimulator for nearly a year now and I can truly say that it has drastically improved my quality of life. It has not been a cure; I still experience symptoms on a daily basis and have to manage my diet and lifestyle very carefully. That said, I’ve been able to gain about 10 pounds, improve my nutrition, and (best of all!) I now get a full 8 hours of sleep nearly every single night.
What I’ve learned through all of this is that if you must always be your own advocate. In doing so, I was led to the Institute for Integrative Nutrition where I studied Holistic Nutrition and Health Counseling. I graduated last year and now certified by IIN, SUNY Purchase, and the American Association of Drugless Practionners.
The combination of appropriate medical treatment, my health and nutrition studies, the experts I’ve been exposed to at IIN, and several years of personal research, has allowed me to develop a framework for diet, supplementation, and stress management that helps me live well with gastroparesis. I’m now sharing that framework with other GPers via one-on-one health counseling, helping them discover how to best manage their own symptoms.
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26 Responses to “My Experience with Gastroparesis”
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My husband just found your blog today and forwarded it to
me. I have been living with gastroparesis ever since my first
pregnancy, about 10 years now. It is infinitely worse during
pregnancies, and last time I wound up with a feeding tube and a
PICC line. Like you, I have tried many things. I tried various
medication approaches for about 6 years with not much improvement
of symptoms but lots of side effects. After my third baby was born
with a fatal birth defect, I wanted to be off of all medication for
the next pregnancy so I “kicked the habit” and figured out that if
I exercise regularly, specifically running, and am careful with
how/when/what I eat, the symptoms are much more manageable. I still
have 2-3 bad flares a year that show up despite my best efforts,
but I am happy to be living a normal life and healthier than I ever
have been. Since I started running (something I used to say I’d
never do), I’ve put 3 marathons and 10 half marathons behind me. I
don’t have enough time right now to read everything on your blog
(I’m a night shift nurse and am scheduled tonight) but will
definitely be back. It’s a fantastic relief to find someone else
out there with idiopathic gastroparesis – I’ve been tested numerous
times for thyroid dysfunction and diabetes, the two big usual
culprits, and those tests have always come back normal.
Hi, Heidi! Welcome to the site; glad your husband found us. First of all, kudos to you for completing all of those races! That’s an inspiration. I’ve always wanted to run a marathon and still plan to do so someday after I don’t need the gastric neurostimulator anymore (running isn’t allowed when you have the device). You’re not the first person I’ve heard say that consistent exercise alleviates the GP symptoms. I’ve found that myself to some degree. Unfortunately I think many GPers end up forgoing physical activity all together since they don’t feel well and that may actually be counter productive. Anyway, so glad that you’ve found a way to maintain a healthy life and manage your symptoms.
Warmly,
Crystal
Interesting that you can’t run with a gastric stimulator. Why is that? Pacemaker leads implanted in heart tissue don’t preclude it. My nurse brain wants to know
.
Heidi, I think activity restrictions vary from doctor to doctor. My surgeon wasn’t comfortable with any repetitive high-impact activity, such as running, since it could potentially dislodge the leads. Some doctors tell patients not to bike long distances or engage in lots of stretching. My surgeon has no problem with me doing yoga, however. Unfortunately, there don’t seem to be universal recommendations, which can be confusing for patients.
Medtronic advices no “excessive, or repetitive bending, twisting, bouncing, or stretching,” which “can cause component fracture or dislodgment resulting in no stimulation, intermittent stimulation, stimulation at the fracture site, and additional surgery to replace or reposition a component.” Yet on the same webpage they say that running and jogging (which me are repetitive bouncing) are okay. So even that is confusing!
I think everyone has to go based on their own comfort level and the advice of their particular doc. Also, I’ve already had the device replaced once, so I think my doc is a little extra cautious.
Crystal
Hi Heidi and Crystal,
Great blog! thanks for keeping it.
I have a pacemaker (enterra) and do most of the common activities I did pre-pacemaker including running. Enterra has a manual with limitations at http://www.medtronic.com/your-health/gastroparesis/living-with/daily-living/ . I think the limitations are diffferent for everyone. My doctor has limited some contact sports, but otherwise has given me the green light to do anything. I have had the pacemaker now for over 5 years (I have had 2 surgeries in that time for pacemaker related problems). I think it is dependent on your doctor and the placement on the device as some frames are smaller and the device’s size can cause rubbing against ribs. It takes some time for the device to for lack of a better word “attach” in the pocket and form scar tissue around it to hold it in place from moving when you do activities. The device is also fairly large due (roughly size of ipod) to the size of the battery which is activated every few seconds for 5-10 years versus a heart pacemaker which is only activated in moments of crisis. Always willing to answer any questions you might have on the device
Cheers,
Jessica
Hi, Jessica. Thanks for sharing your experience. The activity restrictions seem to vary from doctor to doctor. My surgeon is a bit more cautious, I think, since I’ve already had the device replaced once.
I have read through all of Medtronic’s suggestions, but thought they were kind of vague. They advise no “excessive or repetitive bouncing,” but say that running and jogging (which to me would qualify as repetitive bouncing) are okay. That’s actually why I called my doctor to ask. Like you said, I think each case is different based on a number of factors. Always makes sense to ask your doc and see what he/she recommends.
Hope your stimulator is working well for you! I recently posted two videos answering lots and lots of questions about the stimulator — both my experience and just general info — so feel free to comment on those if you have other things to add.
Warmly,
Crystal
Very interesting. Thanks for the input ladies! My GP is in pretty good check as long as I don’t get pregnant again. I have bad flares 2-3 times a year that last a week or so, but otherwise, as long as I keep running and manage my diet, I do ok. Hopefully I’ll never get to experience the fun of a gastric stimulator. I spied a woman today with a J-tube and a packpack containing her pump and I just about got brave enough to ask her if she had it for GP.
I have been having stomach problems for about three years
now. I was initially diagnosed with gerd and treated for ulcers
etc… I remember telling my doctor when this all began that it
felt like food was staying in my stomach for long periods of time.
He either didn’t hear me or felt it was not relavent. Sometimes I
get the feeling they think I’m just imagining my problems. In any
case my symptoms became worse. They must have grown tired of
hearing me complain because they finally ordered a stomach
endoscopy. During the endoscopy they noticed my stomach was not
“churning” normally. Also they noticed I had apple juice that was
still in my stomach 8 hours after I drank it. As part of the
procedure they asked that I fast for 12 hours and take my medicine
the morning of the procedure with a small cup of apple juice. That
turned out to be about 8 hours prior to the procedure. They have
since then ordered a gastric emptying study scheduled for monday
the 14th. But I can already tell them my stomach is not emptying
right. It’s gotten to the point where I am afraid to eat. The only
way to make the pain stop is to not eat anything for a couple days
then the pain slowly subsides. As soon as I eat it comes back again
within a few hours. Usually it is the worst at the end of the day
when I try to go to sleep. For some reason laying down makes it
worse. Not sleeping good, loosing weight, dealing with alot of pain
in my stomach. I rarely get sick, but the pain from bloating and
cramps can be very intense. Am I doomed to have this forever? I
can’t go on like this!!! Do people with GP ever go into remission?
Help!
[...] both an experienced GPer and a Certified
Health Counselor, I know that dietary modifications are
the cornerstone of a good [...]
Hi Heidi, Last year I noticed my GP symptoms improved when
running, but I then was hit with a virus so was unable to for a
while. Since then I have had a hard time getting back to it,
because of weight loss and worsening GP symptoms. How many miles
did you first start out running? How many miles do you run now?
Have you noticed whether it’s more helpful in the morning or
evening? Thanks
Hii I’m 16 years old and I was diagnosed with GP 4 months ago I spent at least 3 month in hospital nil by mouth I still am bill by mouth I get a PEG-J feed for 20-22hours a day I’m not allowed to eat or drink anything. I found ur blog via twitter on which I follow u as x_Haffie_x. At first I was so shocked to hear I had it I had never heard of it before I thought I was the only one but it’s good to know there r others too. Ur an inspiration thank u. I was suprisef to have GP because when I searched peole who had it also were diabetic but I’m not. I’ve been through soo much and it’s hard day to day life especially with school I get tiers soo easily it’s unbelievable And I get stressed and annoyed easily I’ll be reading ur blog for help and inspiration thank you.
I stumbled on this blog while researching GP and pregnancy. I wanted to add my two cents and say that exercise was seriously a miracle for my GP. I’m 25 and was diagnosed with idiopathic GP about 10 years ago….no diabetes or thyroid problems. During adolescence it was much worse, and on paper it was pretty severe. I’m not sure if it was worse due to hormones, or what, but by the time I was about 20 I was fairly symptom free. I also attribute at least part of this, like I said, to regular, vigorous exercise. Running helps me most, but I’ll get bored if I run every day and my knees can’t take that anyway so I cross train with boot camp classes and things like that. It gives me an appetite, and gets things moving.
Unfortunately, GP came back full force once I got pregnant (I’m 23 weeks right now), but I am still running and exercising every day so I am able to somewhat manage it. I actually got a kidney stone a few weeks ago, and so I didn’t work out regularly for a couple weeks. I could tell a difference in the way I digested and felt. I am hoping that after pregnancy things will get back to normal! If it does, I might be able to brave pregnancy again. If it doesn’t, I don’t know what I’ll do. I am SO TIRED of eating mashed potatoes for dinner every night because it’s the only thing that won’t set me off!
Additionally, this sounds silly, but one night I was experimenting and really fed up with the internal burping/fullness. I started kind of pressing down on my stomach like I was giving myself a massage. After about 10 minutes, it alleviated a lot of the symptoms for the most part. I bought a handheld massager, and now after eating dinner I have it on my diaphragm right under my rib cage and massage for a little while. I think maybe it breaks up the gas or something. I don’t know, but it’s helped me a little bit!
Hi All,
I was diagnosed 3.5 years ago. I was never a runner, but got into it 2 years ago and completed my first half marathon in 11/09 and did my first full 11/10. As I reflect back on training, I have realized that it was the best I have felt in a long time. I did struggle to get myself to eat sometimes because I would have no appetite after a long run, but all in all, best thing I have done. I will start training again in June for another full this November.
I just found this site and it is interesting how other people live with GP. I have found I live with my heat pad on my stomach, especially after eating. It seems to make the bad stomach aches go away and the food seems to digest better. Don’t seem to vomit as much or have the gas as much. Always looking for something new to help so enjoyed reading the way others are coping.
Hello,
I just came across this site and can not stop reading. My 4 year old daughter just got diagnosed today with Gastropersis after 6 hospitalizations that started at 11 months old. She has been having symptoms since she was about 3 months old. It has been really hard on her and our family. It feels good to finally have a name to her symptoms but it is also very scary. She has had more test and procedures done that it is hard for me to remember them all. It has all been very stressfull on her. I am looking for more information on children with GP. I have been looking online for hours and have found very little info from ppl that actually has a child that lived with this condition or that still does. I am dying for information. Thank you for your time. -Stephanie
Hi, Stephanie. I’m sorry to hear about all that your daughter and your family has gone through. There are several moms and dads who read/post here who have little ones with GP, so perhaps you can all lean on each other for support. If you have questions or need specific suggestions, please free to send me an email.
Warmly,
Crystal
Wow!! I finally found a current site with fellow people with GP. I have achalasia and suffered from it since I was 22 (currently 36). I had a Heller Myotomy with partial Nissen back in December. Afterwards I started experiencing early satiety and throwing up at times (which is not fun when you have part of your stomach wrapped around the esophagus). I have dropped 25 pounds. I had a gastric emptying scan which confirmed the GP. As a RN, I worry about the quality of life and/or longevity but as a hobbyist who enjoys cooking this stinks even more.
I hope to watch this blog frequently to gain hope and suggestions. Thanks for your time.
Hello,
I am so happy to have stumbled upon this blog. I have felt so alone with my idiopathic GP. I was diagnosed with GP a few years ago finally after the GI and other docs continually tried to convince me that my problems were all stress and anxiety. I went through a few very uncomfortable tests before the GI finally ordered the radioactive scan which confirmed my GP. It was pretty frustrating to have been told for so long that my symptoms were all in my head, but I know my bod and I’m glad that I stayed persistent and finally got an accurate diagnosis. I am having trouble getting enough nutrition and have had a couple of bouts of anemia in the past couple of years which I fully attribute to the GP, since I just can’t seem to get enough food in me. I am finding that eating small meals and over-chewing my food is quite helpful with the uncomfortable symptoms. I sorely miss some of the foods that I’ve had to eliminate – marinara sauce being one of them:( I am curious about the other GP folks on this blog having such success with jogging. I have been a runner for many years and have found that it has been more difficult with the GP. I have to wait until my stomach is completely empty before I can jog because as I’m sure you all know, any contents that are in your stomach will come right back up your esophagus – and when that happens, the GERD symptoms plague me for a few days. So I’d love to know what your “secret” is, if any about how to manage your jogging time with meals, liquid intake, etc. I really miss running!
I greatly appreciate any feedback – Anne
Anne, I always run first thing in the morning and on an empty stomach. I use http://www.hammernutrition.com products for my fueling because they are easy to digest and don’t cause me lower GI problems. For an average run, I use hammer gel and endurolytes capsules or drink water with endurolytes fizz dissolved in it, fueling 10-15 minutes before I set out and every 45 minutes thereafter. For my super long (2 hour +) runs, I add in perpetuem, which has broken down protein in it along with carbs and elecrtolytes. Sometimes I do have trouble digesting that, and I do better if I take it in little sips every few minutes rather than slugging it all down at once. I often don’t feel hungry for a while after a long run – most of my friends could eat a whole pizza after running a marathon, but it takes my stomach a while to recover.
There’s a break point for me – after certain races I have vomited the rest of the day. I think my belly is really happy if I run at a comfortable pace for 2 hours or less. When I run for longer than that, the pendulum swings the other way and it starts to shut down again. When I run at a faster pace, which I am inclined to do during races, again, it tends to shut down. My doc’s theory about this is that when I run faster, more blood is being pulled away into the muscles and not perfusing the bowel/stomach. So I’ve learned to run below my fastest race pace threshold, and I’ve also learned that on the super long runs I need to take my time through water stops. In my most recent marathon, I finally broke the 4 hour barrier, and for the last 13 miles of the race I walked for 2-3 minutes at each water stop then resumed my usual 8:30-8:45 pace. My belly stayed calm, functioned well, digested my fuel and I didn’t reflux any of it back up.
It’s taken nearly 4 years of running for me to figure out the right balance, but oh so worth it. Haven’t taken Reglan or a PPI for a little over 5 years now.
My 14 year old daughter was just dx a week ago after being ill for a month. My sister has Crohns and GP so at least we have someone to sypathize and support. However, I as her mother am having a hard time. I have a history of bowel problems and surgeries myself so I can sympathize as well, but this GP is a little out of my realm of expertise. I am so frustrated because there seems to be nothing to give her any comfort. I got some Domperidone from my sis and it seems to help a little, but not like I’d hoped, ran all over last night looking for a hand massager, got one only to have her tell me that didn’t help either. I am no stranger to abdominal pain and nausea, so I feel so bad that I can’t help her. I am beside myself, is there any trick to taking the domparidone? anyone know how long it lasts before it’s safe to take another?
Any suggestions would help, we are both sleep deprived and I have to work full time. She needs some relief, I hate to see her suffer this way….
Kim
My friend told me about this forum. I have a PEJ feeding tube and had a neurostimulator put in in march this year. Though my weight has finally stabilized, I still feel quite nauseas every day and take ondansatron wafers like they are lollies.
Any suggestions to help with my symptoms?
Thanks
Hi Crystal,
I was wondering if you could comment about your experience with acupuncture. I’ve been thinking about giving it a shot. Does it help with symptoms? motility?
thanks
Pilates…
My Experience with Gastroparesis | Living (Well!) With Gastroparesis…
My 6 year old daughter was just diagnosed today with GP! We are also desperate to get our hands on any information available!! Where are the best doctors? What does this mean? My heart just aches for her right now!
Hi crystal!
I’m Taylor and I am only 19 years old. I was diagnosed with gastroparesis when I was 12 years old and it ruined my social/emotional life from age 8-12 till at age 12, after seeing every doctor in Norma state, figured out I had gastroparesis. Those 5 years of being so nauseated and in so much pain and not knowing what was wrong were terrible and I ended up developing an anxiety disorder. After I was diagnosed at age 12, I was put on reglan which worked really well for me, enough to where I went back to school my junior and senior year with only slight setbacks. This past fall I started feeling the symptoms again so I went to my gastrologist. He put me on reglan again, saying that since I didn’t have side effects last time, I probably wouldn’t this time. Well I had the WORST side effects…muscle pain, shortness of breath, fatigue and I had to get off. Now he doesn’t know what to do because “domperidone” isn’t available in the United States. I know we can get it from Canada but my dad is concerned about side effects and what not. Anyways I’ve been having to take phenergan, 3 times a day which totally knocks me out and makes me act so groggy when I am usually SO happy, despite this stupid sickness. I know phenergan is just easing the symptoms but I don’t know what else to do. I’m engaged to a marine who is stationed in Okinawa, Japan. He’s been there for 2 years and came home this Christmas and I was a sick sick girl, much different then the last time he saw me. He understands and is very supportive but I just don’t want him to have to deal with me like this. I want to live my life like I used to so I get up every morning and do online classes and try to conquer it each day at a time but I feel like I’m going nowhere! I am going to purchase your books because 1, I cannot cook so I find myself eating little and not getting enough nutrition. I cannot thank you enough for sharing what you’ve learned with all of us because this is something you have to live with! And I refuse to spend the rest of my life laying in bed, nauseated. Thank you so much, for everything!
Taylor
I’d first like to say I am so happy I found this site! I am 19 years old and a little over a year ago was diagnosed with celiac disease. While following my gluten free diet things have been going great up until the last 3-4 months. I went in for another endoscopy about a month ago and my stomach was still full from my dinner (13 hours before surgery) the night before. I then went in for a gastric emptying test which of course showed very slow digestion. My doctor is currently out of town and I can’t get in to see a dietician until the end of the month. Until then does anyone have any suggestions for meal plans which are gluten free and of course low fat and low fiber to cope with the gastroparesis? It has started affecting me so severely I have missed a few days of work (which is very unlike me) and as many of you have stated I’m lucky to get a full night’s rest once a week. I just feel like this is taking much longer than necessary given the pain I am currently in. Any suggestions you have would be so greatly appreciated!
Thank you all!
Kathryn