How I Found my Plan B

Posted in: About Me ♦ Friday, January 14th, 2011, 3:30 pm ♦ 50 Comments
How I Found my Plan B

 

 

 

Plan A is always my first choice…
the one where everything works out.
But more often than not,
I find myself dealing with
the upside-down version
where nothing goes as it should.
It’s at this point the real test
of my character comes in…
Do I sink or do I swim?
Do I wallow in self-pity
or do I simply shift gears and
and make the best of the situation?
The choice mine.
Life is really all about
how you handle Plan B.

~Suzy Toronto

My life was turned upside down when I was 23 years old.

I had recently graduated from Dartmouth College with lots of plans and few worries. I lived with my boyfriend (who would later become my husband) and worked for a local not-for-profit organization planning large fundraising events. I loved being physically active and was getting serious about running, with the goal of completing a marathon.

I’d been having digestive issues for a couple of years, but was told it was stress-related after initial testing was normal. Over time, I started to notice that I felt full very quickly, regardless of how hungry I was when I started a meal. I also had nagging stomach aches and frequent nausea. It took nearly a year, but I finally ended up with a diagnosis: gastroparesis or delayed gastric emptying. Gastroparesis is a condition in which the stomach no longer empties food properly. It sits there for hours longer than it’s supposed to, causing chronic and often severe nausea, vomiting, pain, reflux, and/or bloating. In many cases, mine included, the cause is unknown. Unfortunately this condition is poorly understood, difficult to treat, and truly life altering.

The next several years were rough. Really rough.

I spent most of my mid-twenties searching for an elusive cure or all-knowing expert to rid me of this horrible condition. While I was outwardly optimistic, frequently declaring that there was an answer and I would find it, I was inwardly full of resistance, guilt, and anger. I felt as if everything I worked for and dreamed of — having a successful career, a fulfilling relationship, a comfortable lifestyle — was being taken away and I had no control over the outcome.

By the time I was 26, I was jobless, depressed, and more symptomatic than ever. I was newly married but not happily married. Our relationship was bending under the strain of constant stress and mounting debt. My social life consisted mostly of frequent trips to the ER. I wore sweat pants all day and slept on the couch at night since I slept only 3 or 4 hours per night due to the chronic nausea and growing anxiety. Things were a mess. My Plan A was in shambles.

But then I made a choice. A choice to make a change.

At some point in 2008, nearly 4 years after I’d been diagnosed, I began to realize that I had a choice. Lots of choices, in fact. Everyday. And based on those choices, I could either continue down this path of misery and resistance or I could begin to accept my situation and make the best of it. I also began to realize that I had far more control than I was admitting. I had control over my attitude and the way I chose to approach this unexpected and difficult challenge in my life. I still don’t know where these realizations came from but they started to bring about changes.

At first the choices were small — wear real clothes today, cook dinner for my husband, eat a banana instead of a 100-calorie pack — and the changes were barely noticeable. But one thing led to another and soon I was practicing yoga, getting acupuncture, nourishing my body a little better, spending some time outside of the house, making an effort to re-establish a connection with my husband. I was still quite ill, undernourished, sleep deprived, and emotionally overwhelmed, but I was starting to see glimpses of healthier, happier days ahead.

About a year later, I decided to have a gastric neurostimulator implanted in my stomach. The device isn’t a cure for gastroparesis, but can have a significant impact on the frequency and severity of nausea and vomiting associated with the condition. The option had been presented to me two years prior, but I was so resistant to having gastroparesis that I couldn’t even begin to consider the surgery. Now that I was choosing to practice acceptance, with the goal of doing everything I could to live as well as possible with this condition, it was a no-brainer.

That’s when I found my Plan B.

On September 19, 2009, I had the gastric neurostimulator implanted. One week later I enrolled at the Institute for Integrative Nutrition. Those two choices changed my life.

Recovering from surgery, managing a health condition, and studying holistic nutrition/health counseling was no easy task. But between what I was learning at IIN about better nourishing my body and mind, and the symptomatic relief I was experiencing from the gastric neurostimulator, I was getting stronger and stronger. While I’d initially joined IIN with the goal of improving my own nutrition and wellbeing — becoming my own expert in living well with gastroparesis since I couldn’t find anyone else out there to help me — I soon realized that I had to share what I was learning and the impact it was having on my health and happiness.

I started a blog, not knowing if anyone would ever read it. They did. I quickly gained a steady following. I started offering individual health counseling to others with gastroparesis, not knowing if it would help them. It did. I started to see their lives change, as well. I wrote an eBook to help others better understand how to eat for gastroparesis management, not knowing if anyone would buy it. They did. And they soon asked for it in hard copy, too. Things just kept rolling. This wasn’t the life I had set out to lead…but it sure beat the life I was leading a couple years prior.

Today my life so much more than my circumstances.

Today, at age 31, I have a successful career as an educator and author. I published my second book in December 2011, which continues to garner 5-star reviews. My husband and I are thankfully still married and now very happy. I’m pregnant with our first baby (due in September!). I still have gastroparesis. In fact, repeat testing has shown no improvement in the condition…but my life? Night and day. And when I look back, it all came down to a choice. A choice to make a change. A choice to accept my situation, learn from my challenges, be grateful for the gifts in my life, and rock my Plan B.

Today my work and my life have transcended far beyond my circumstances. Though I still have gastroparesis, I’m not a gastroparesis patient. I’m a mama-to-be, wife, daughter, author, educator, speaker, advocate, and dreamer. My challenges are a piece of my life but they do not define my life and they certainly do not dictate the quality of my life. My goal to empower and inspire others to live well, too, whatever their own challenges may be!

 

 

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50 Responses to “How I Found my Plan B”

  1. Posted by: Heidi
    January 28th, 2011 at 10:49 pm

    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.

  2. Posted by: Crystal
    January 29th, 2011 at 3:31 pm

    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

  3. Posted by: Heidi
    February 15th, 2011 at 12:12 am

    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 :).

  4. Posted by: Crystal
    February 16th, 2011 at 7:15 pm

    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

  5. Posted by: Jessica
    February 17th, 2011 at 7:08 pm

    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

  6. Posted by: Crystal
    February 17th, 2011 at 7:30 pm

    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

  7. Posted by: Heidi
    February 19th, 2011 at 12:38 am

    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.

  8. Posted by: Erik
    March 6th, 2011 at 4:42 pm

    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!

  9. [...] both an experienced GPer and a Certified
    Health Counselor, I know that dietary modifications are
    the cornerstone of a good [...]

  10. Posted by: David Lane
    March 14th, 2011 at 2:25 pm

    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

  11. Posted by: Hafsa
    April 9th, 2011 at 12:52 am

    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.

  12. Posted by: Leighanna
    April 11th, 2011 at 5:12 pm

    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!

  13. Posted by: Joy
    April 12th, 2011 at 12:51 am

    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.

  14. Posted by: Alyce
    April 12th, 2011 at 3:59 pm

    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.

  15. Posted by: Stephanie
    April 16th, 2011 at 7:02 am

    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

  16. Posted by: Crystal
    April 16th, 2011 at 5:27 pm

    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

  17. Posted by: Robert RN
    May 18th, 2011 at 4:14 am

    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.

  18. Posted by: Anne
    June 7th, 2011 at 6:10 pm

    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

  19. Posted by: Heidi
    June 15th, 2011 at 10:25 pm

    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.

  20. Posted by: Kim L
    June 19th, 2011 at 5:19 pm

    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

  21. Posted by: Li
    July 6th, 2011 at 10:35 am

    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

  22. Posted by: Christina
    August 4th, 2011 at 8:18 pm

    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

  23. Posted by: Ayurveda
    August 14th, 2011 at 4:36 am

    Pilates…

    My Experience with Gastroparesis | Living (Well!) With Gastroparesis…

  24. Posted by: Stacie
    December 16th, 2011 at 5:41 am

    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!

  25. Posted by: Taylor
    February 16th, 2012 at 8:03 pm

    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

  26. Posted by: Kathryn
    April 12th, 2012 at 7:14 pm

    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

  27. Posted by: Paige
    June 20th, 2012 at 1:56 pm

    I was diagnosed with GP a year and a half ago. I have the idiopathic kind. I’ve been tested for diabetes, thyroid problems, scleroderma, auto-immune diseases, gall bladder problems and I’ve tested negative to everything. I guess I’m one of the lucky ones in that I don’t throw up much. And, I haven’t lost any weight…in fact, I’ve gained 45 pounds! None of the regular meds worked for me (reglan, domperidone, etc.). Currently I take pancreatic enzymes to help digest my food. That helps some, but I’m still gaining weight and I need help figuring out how to lose the weight. I read some other message boards that said to eat more. But, let’s face it, I have GP and food is the enemy. I don’t want to eat more because that just makes me feel worse. I’ve tried exercising but that didn’t help either because I was gaining muscle that i’ve lost over the past year and a half. And I really don’t have the stamina to exercise as much as I need to. (I actually fall asleep while exercising, because I’m so tired.)

    Anybody got any ideas on how I can lose weight? I’ll try anything…

  28. Posted by: Pam O
    July 22nd, 2012 at 8:46 pm

    Crystal, this website is a godsend to people living with GP! I have 33 yr old stepdaughter who has had severe Diabetic GP for the past 3.5 years. She hasn’t yet accepted that Plan A isn’t going to happen – although for the first time she admitted it about a week ago which is a huge step forward! I will be showing her this post..and hope she can finally see that Plan B DOES exist and life can STILL be worthwhile! As a family member with someone suffering, this website has become my new BFF! I just wish you lived near us!!! :) I wish you all the best with your baby.

  29. Posted by: Vikki
    July 24th, 2012 at 1:38 am

    Hi! I have been recently diagnosed with moderate to severe gastroparesis. I keep getting conflicting information about what I can and can’t eat. I have a dietician who said I can eat all the soluble fiber and be okay…..the other dietician I saw said to avoid fiber period. Eat like a person with Chron’s disease? So confused as to what to really eat. Please any information would be greatly appreciated. I am diabetic as well as I have IBS-not with constipation, and hypothyroidsism. I feel so overwhelmed and doomed. Any help would be greatly appreciated.

  30. Posted by: Crystal
    July 26th, 2012 at 8:32 am

    Vikki, my best advice would be to pick up a copy of the Eating for Gastroparesis eBook or paperback: http://www.EatingForGastroparesis.com. That will really outline everything for you — much more than I could in this comment! You can also find videos about Eating for GP on my YouTube channel at http://www.YouTube.com/csaltrelli.

    Warmly,
    Crystal

  31. Posted by: Amy
    August 7th, 2012 at 3:53 am

    So happy to have found you all! I am newly diagnosed (again, finally, after many tests, feeling like I was just insane etc etc) I have ordered my books and connot wait! I’ve always had a huge interest in health and fitness so this is a big shock and will be a BIG nutritional change, but I’m confident and determined to tackle this head on and positively, especially afterr finding this site! I am the same with running, makes me feel sooo much better in daily life.
    I do seem to get a constant burning in my stomach which i can’t seem to control (which i used to mistake for hunger!) any ideas what I could do?
    Keep up the good work!

  32. Posted by: Molli
    August 25th, 2012 at 9:21 am

    I cannot express to you just how much it has meant to me to have found your blog/website. I am one of those mothers who would do ANYTHING for her child but have no idea what direction to go in.
    My 15 year old has been incredibly ill since the beginning of 2012 with no answers in sight (just an incredible number of tests and no real answers) After seeing a Pediatric GI doctor the answers became clear very quickly. After a lengthy hospital stay, she is now home with an NG tube and has begun her 10th grade year of school.
    This beautfil young girl has been a competitve long distance swimmer,for two swim teams, since third grade. Her one love/obsession she craves to do has been stopped by GP. Her goal is to get back into the water ASAP and find a way to manage(with food -not an NG tube and formula)this “bump in the road” which has brought her to an all time low emotionally. She is a fighter but her “normal” has come to a severe halt and being a teenager doesn’t help.
    Understanding that we are so new to all of this -is there a way or direction for us to go, as far as, diet that will enable her to get back into the water and compete once again.
    We are just in the process of introducing vitamins and increasing her pump to try to get her to 100%(we are now at 65%).
    Any help you can give us would be greatly appreciated.
    Thank you for educating and showing us that life still continues on once you are given this diagnoses.

  33. Posted by: sue
    October 22nd, 2012 at 7:33 pm

    Thank you for this great site. I felt like I was reading about my daughter, Sarah. She has celiac and lactose intolerance and has just been diagnosed with gastroparesis. It is at its worst right now. She has a part time job, because a full time one is hard to handle. She is 23 years old and a Finance major. Had such big plans, but feels like her life is spiraling downward. She has a very understanding boyfriend and I hope it stays that way.

    Your site has encourage Sarah to rethink life. We have ordered your book, not realizing when I read your blog, you wrote it. Can’t wait to get it.

    Thanks so much, keep up the good work, Sue (concerned mother)

  34. Posted by: Marie
    November 6th, 2012 at 4:57 pm

    Thanks for your site! My sister was just diagnosed with ideopathic gastroparesis and she told me that the average life expectancy of a person diagnosed with this is 5 years. But I have now been on the internet for over an hour and have not found anything suggesting that is true. Please help me out here. She is 48 and not diabetic. She has been on anti-depressants, anti-anxiety meds and sleeping pills for years. Could that have caused this?

  35. Posted by: Crystal
    November 6th, 2012 at 7:16 pm

    Oh, Marie, that is NOT AT ALL true! (If you find out where she heard it, please let me know — that kind of false information is so detrimental.) There is no “life expectancy” associated with gastroparesis as it is not a terminal disease. A very small minority of people with gastroparesis pass away, but it tends to be the very complicated cases and is usually a result of complications from an underlying or associated illness or infections. Please tell your sister that not only can she live with gastroparesis, she cane live WELL with gastroparesis! Tricyclic antidepressants can delay gastric emptying. She may want to talk with doctors about that if she is on those kinds of meds. Also it seems that type A and anxious people are disproportionately affected by the condition; there is an intimate relation between the brain and the gut and dysfunction in one often affects the other. Hope that helps!

  36. Posted by: Michael
    November 18th, 2012 at 10:26 pm

    Starting when I was 21 I got diagnosed with IBS and the symptoms begin to taper off over the last two years. However, I had a really bad flu like virus around mid June of last year, was very possible that it was mono or the actual flu but couldn’t go to the doctors due to no insurance at the time. Immidiatly after recovering, I began to have horrible acid reflux, waking up every morning with a sour stomach and like a stinging type pain in the abdomen along with horrible gas and bloating I could literally fell food sitting in my stomach but the Dr. insisted it was just Gerd due to stress. I lost a lot of weight and had no appetite but finally in June of this year I was able to go to a GI Dr. because I was able to get insurance. He ran an upper endo and found food still in the lower part of my stomach which had been 12 hr before the procedure. He finally began questioning when my issues started and when I told him about my sickness the year prior he immediatly diagnosed me with Idopathic GP which is a rare complication post virus. Prescribed me Reglan which didnt help at first but with restored faith in my God and dietary changes, I’m 10 times better right now than when this first started, I’ve actually come off my medicine due to my increased improvement. The Dr. told me my GP may completely resolve just the way it started because post viral GP usually takes up to 3 years and in most cases clears up. I wont to give you guys hope, you must keep evolving with this condition to be able to management and as hard as it can be, don’t let this condition get you depressed because depression will make it worse, trust me I know. Be determined and turn to your faith when all seems hopeless. Maybe this helps someone. God bless.

  37. Posted by: Marie
    November 26th, 2012 at 1:51 pm

    Crystal,

    Thank you so much for answering my comment, and so quickly! It really meant a lot to me! It is important to say that my sister has been overwhelmed with a lot on her plate and is responding to many physical, emotional and other problems. The best answer she could give me about where she got that (false) information is from a study by the NIH. The study can be found here:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2705939/
    The study IS interesting and does conclude that life expectancy was reduced in the target population of people with gastroparesis. However, the study never states that those with gastroparesis have a specific life expectancy. I believe that my sister´s statement about having a 5 year life expectancy came from an incorrect understanding of a graph in the NIH study which records how many people in the study were still alive after five years under study. I did point out to my sister that if one looks up life expectancy calculator on the internet, it states that one must deduct 12 years life expectancy for a person who smokes 20 or more cigarettes a day, deduct 10 years if a person is obese, etc., so given her numerous physical and other struggles, it is not incorrect to assume that her life expectancy will be lower than that of a person who is not dealing with her struggles.

    My sister also said thank you for sending her the link for your encouraging blog. I thank you personally for giving people the very correct perspective that we can respond to any and every circumstance with a positive or a negative outlook. We each face various kinds of trials, many of which are overwhelming and we are not equipped to deal with them on our own. I personally believe in a God of compassion who pours out His compassion on each of us when we call on His name. Through His love and power, His grace and mercy, we can each stand. I pray that each person reading your blog will seek our Creator and gain the power to live well through His love.

    - Marie

  38. Posted by: chris
    January 27th, 2013 at 4:44 pm

    Crystal, thanks so much for sharing your story & for the books, I have order 2 for now. I hope all is well with the new baby. Having 3 children I understand how much work children require. I hope your health has maintained through having he child. God Bless, Chris

  39. Posted by: Debbie Bullock
    February 28th, 2013 at 9:38 pm

    I have been living with Gastroparesis for about a year and a half now. I’m so lost and confused because I barely eat and am gaining weight???? Seriously confused. My stomach is dlways swollen with either gas or the fact that I have not used the bsthroom in days. I’m so confused in what to do ……nbut ten lbs I’ve gained for no reason whatsoever….I’m always feeling bloated and fat. I’m seriously sick of out ….don’t know what to do??

  40. Posted by: Cristy Ellis
    March 15th, 2013 at 11:41 pm

    Hi I’m glad I found this site. I just recently got out of the hospital and was diagnosed with GP. I was rushed to the emergency room after severe stomach pains (worse than labor) and continous throwing up. I am diabetic as well and frankly scared to death. I have a 2 year old and I want to enjoy life with my little family, but i feel sick constantly. I really have no idea what I am supposed to be doing! Thankfully I have a doc app this Tues. hopefully they know more. And i dont have insurrance…so this is gonna get expensive :( so anxious and a little depressed.

  41. Posted by: Cynthy
    March 17th, 2013 at 9:28 am

    I’ve had Gastroparesis for 14 months, but was only diagnosed 3 months ago. I have been taking Zofran for the nausea. My GI doctor put me on Erythromycin as I cannot take Reglan. The Erythromycin seems to work off and on.

    I had a consult last week with a surgeon for the Enterra neuro-stimulator. Everything seemed like a “go” for the surgery, but I have one risk that I have to consider: the surgeon told me that the leads from the pacemaker are nickel (it also states this in the manufacturer’s book) covered with polyurethane. I am highly allergic to nickel (blood tests confirmed this). My surgeons concern is that if the leads from the device should ever get corroded, and the polyurethane cover start to dissolve, then I will be exposed to nickel internally. That is risky due to my allergy to nickel, as I would have an entire immune system reaction, including respiratory problems.

    At this point, I don’t know what do. Has anyone heard of the leads corroding?
    Thanks

  42. Posted by: Brittney
    May 29th, 2013 at 2:33 pm

    Hi,
    I am a mother of a 19 month old baby. I was extremely nauseous and had horrible heartburn all through pregnancy. It never ended after having my daughter. I had a few flare ups all stomach related, sometimes bleeding ect. All left me with no appetite, extreme bloating, vomiting and constipation. I had several test done and no answers. I kind of gave up, tried cutting things out of my diet one by one trying to find the trigger. All while training for my first marathon. I ended up really sick after I finished. No appetite for a few days and when I finally was able to eat I couldn’t keep anything down. I was so hungry during my marathon but every sip of water I drank I nearly threw up. I ended with a time I wasn’t so proud of since I trained much better. Its sad that this was the final straw- so I went to a GI specialist. Yesterday I had a upper and lower colonoscopy. After a 36 hour fast I still had a stomach full of food. Needless to say I go back next week for a gastric emptying test. In the meantime I am so nauseous all the time- I am a massage therapist and Pilates instructor so I am always moving (and always wanting to throw up on clients.) I have to count calories to make sure I eat enough because my stomach doesn’t really know when and I burn a lot of calories throughout the day. I should buy your book- or wait for a definite diagnosis. Thanks for the info! Your site has been very helpful.

  43. Posted by: Lori
    June 4th, 2013 at 1:48 am

    Dear Crystal,
    You are SUCH an inspiration to ALL who live with GP, and I commend you for sharing your story with us, and most of all, for reaching out and trying to make a difference in GP patients lives!!
    I was diagnosed with idiopathic Gastroparesis 5 years ago, but had been symptomatic for about 3 years prior. My stomach AND intestines are BOTH paralyzed. My doctors think this is probably because of my former primary physician waiting so long to send me some place to be tested for stomach and intestinal diseases. Instead, my former doctor chose to keep me in the hospital for 2.5 YEARS on IVs and morphine and dilaudid to just treat the extreme pain and dehydration. I was very happily married with 3 beautiful young children at home at the time. Whenever I would ask my doctor about there being “something else out there” to keep my pain, nausea, vomiting, and dehydration under control at HOME, he would get in my face, and tell me that I needed to “wake up and realize that my life, until I die, would be living in the hospital!” the nurses would often ask my doctor to send me to the Mayo for testing. They got treated the same way I did by him, and we’re reminded that HE was the doctor, and they were the nurses that were there ONLY to follow out his orders!! Nothing more, nothing less! The nurses would also come to me and tell me to insist I see a G.I. specialist. When I went to my doctor and asked him to see a G.I. doctor, he then became very irate with me, and told me that he was “going to quit being my doctor if I did not quit asking about seeing a specialist, and trust HIM when he would tell me there was nothing that could be done for me outside of the hospital. He ALWAYS made me feel as if I was doing something wrong by asking to see a specialist. So, I would always back down, apologize to him, and go on living in the hospital as I had been. After 2 1/2 years of living in the hospital I could not take it any longer. I asked my doctor if I could go home for a couple of days. When I went home at that time I decided to start researching G.I. doctors and pain management specialists. I ended up finding a good G.I. doctor at the Mayo Clinic in Rochester, Minnesota, and a pain management doctor in Aberdeen, South Dakota. When I went to the mayo clinic they did many many tests including the gastric emptying test where I found that I had a very bad case of gastroparesis that extended from my stomach all the way through my small and large intestine. Since then, I have had a feeding tube and nasal gastric feeding tube, and a PICC line for enteral nutrition. My pain had to also be addressed. I then saw my pain management specialist where she put in an internal pain pump. This has all helped me CONSIDERABLY!!!! I have now been able to live at home for almost 2 years. I still have problems with nausea, severe constipation, and some pain, but not to the extent that it used to be! The little bit of food that I do take in everyday, leaves me feeling very tired all of the time because My body does not absorb the nutrition out of the food anymore. I spend 95% of my life on the couch, but at least I am home! Since I went out on my own and found these other doctors without my primary care physician’s recommendations, my doctor sent me a certified letter telling me that I would never be seen by him or anyone else in our local clinic ever again. My former doctor obviously needed reasons to not see me again. So he put several blatant lies in my permanent medical record stating such things as I was refusing to take my meds, and that I was nothing but a drug seeker. When in fact I was the one who wanted off of all the drugs my former doctor had me on and this is why I sought help from A pain management specialist. My problem now is that I cannot get any other doctor to take me on as a patient because of what it states in my medical record from my previous doctor.
    I have talked to many people….friends, relatives, nurses, other doctors, specialists, etc., who all agree that the only reason why my former doctor kept me in the hospital for two and half years, was because they were building a brand new hospital and were desperate for income. It ended up costing me and my insurance company over $2 million. I live in a small town in rural South Dakota with a population of 2500 people. We are mainly a poor community. So with the $2 million that our local small hospital received from me and my insurance company, this helped a great deal in building that new hospital. I have been told by my Mayo doctors, that I may not live much longer because of the damage that the narcotics I was given in the hospital, did to my entire G.I. tract. At this point, I do not know where to turn or who to trust. The problem with being treated at a small country hospital, is that the doctors here have never seen Gastroparesis, and one of them even told me that he does not believe it exists. I know I need a new primary physician ASAP, but who is going to want to take me on when they see the lies in my chart from my former doctor? Guess I am just curious, but what would you do if you were in my shoes? This whole thing has been such a nightmare for me and my whole family!! I just never imagined that a doctor, of all people, would stoop so low!! I also am wondering if you have any ideas about what I could eat in order to give my body the nutrition it so desperately needs. I have yet to find a diet or ideas about what I could eat with a paralyzed stomach and intestines. Any ideas or help at all would be so greatly appreciated!!
    Thank you and God bless!
    ~Lori~

  44. Posted by: Lori
    June 4th, 2013 at 2:05 am

    Crystal,
    I forgot to tell you in my previous email, that I do not have any sort of feeding tubes or PICC line anymore. The feeding tubes did not work out, as the food would still not move through my intestines. The PICC line ended up getting a huge blood clot in my entire arm, so it was removed. I am now completely dependant on eating food orally to nourish my body. I need to find foods extremely rich in nutrition, but that are also liquified.
    ~Lori~

  45. Posted by: Julie
    September 12th, 2013 at 9:34 am

    Crystal,
    Thanks so much for sharing your experience w/GP. I am 45, and I too have this ‘not so fun’ title! I suffered for years with anorexia and bulimia- had all kinds of problems and of course these two deadly diseases is what the doctors think was a huge if not cause to the GP. Suffering is how my days go, every single day! I do work, live alone, exercise, and eat healthy but I don’t eat much. It’s difficult to go places to eat with friends or co-workers because everyone says ‘eat this, eat that’ or ‘you’re so skinny, you need to eat more’! It makes me furious at times, but I just smile and say i’m full, or i’m not really hungry. Before I eat I take a medication that I have send to me from Canada, w/a prescription which helps the foods pass through. If i’m eating pudding, oatmeal or scrambled eggs, I do not need to take it.
    I also have problems with my bowels- or should I say lack of bowel movement! The doctor wants me to try a new medication for this. It is supposed to help, but I haven’t started taking it yet. The stomach pain gets so bad that it makes me break out in a sweat and I get very sick to my stomach.
    Tomorrow I will have x-rays of my stomach to make sure there is not kinks or obstructions going on, then I will find out if another colonoscopy will be done.
    I get so tired/fatigue that I don’t want to do much outside of my house because- it’s almost a chore for me to do things w/friends so I tend to do things alone. I’m always very upbeat and positive, smiling and full of energy; but beneath the surface, I would rather be in bed for the most part.
    I’m open for any and all advice from you and other’s that are reading this!
    I’m not giving up and refuse to have this GP ruin my life!
    -Julie

  46. Posted by: Susan Thompson
    September 28th, 2013 at 1:13 pm

    Crystal,

    I was directed to your site by a friend after a year and a half of pure hell. Since April 2012, I have experienced 7 attacks of pancreatitis, which occur without warning or cause (chronic idiopathic). After this last attack, I finally got a GI doctor to do an ERCP. No surprise, the food I had eaten over 24 hours ago was still there, and looking like it was taking up residence. After giving me a brief lecture about GP, I was released from the hospital the same day as the procedure. I’ve been home 2 days now, and have found the information concerning GP not only overwhelming, but downright scary. Not only do I have this new diagnosis, but I am Type 1 Diabetic as well (and a host of other medical problems). The fatigue, depression, and anxiety makes me want to stay in bed with the covers over my head!! I don’t know where to start…..should I start a food diary? Clean out my pantry for culprit foods? And how can I integrate my new diet into cooking for my boyfriend as well? He’s extremely supportive, but I don’t want him starving….LOL. I am at a loss. I feel so overwhelmed that I don’t know where to start. My anxiety has kicked in full force, and I’m left scouring the internet for information that just adds to my anxiety. I don’t want to live in a bubble or be secluded from the world outside….I want to live. I want to be happy. I want those around me not to feel like they have to treat me with kid gloves. I need help and a starting point with a laid-out plan. Hopefully, you can lead me down the right path!

    Sincerely,
    Susan

  47. Posted by: Klavdia Herrera
    January 27th, 2014 at 8:32 pm

    Hello Crystal,
    My son is 8 years old and has been diagnosed with GP. He has also been diagnosed with GERD since he was a baby. He has always experience acid reflux and stomach aches and constipations since very little, but last year around august he started being sick with strong stomach aches and nausea at all times. at the begining we thought he had a virus then the days passed and he continued being sick…..especially in the mornings.. we took him to the dr and had several test done and everything came back negative. But i had to keep fighting to find answers. Finally we got to see our gastro pediatrician and he had an endoscopy and several biopsies done and also came back negative. Last week he had a empty stomach scan procedure done and the results came back and he was finally diagnosed with GP. On Saturday he started taking Azythromycin and so far he is doing well. I talked to my friend about this and she found your page. I just cant tell you how please and happy I am , that my son is not alone and there are other people with the ones we can share our stories and help each other. Thank you

  48. Posted by: Delia Le Roux
    February 18th, 2014 at 2:56 pm

    Hi Crystal. I was diagnosed with diabetic GP 3 years ago and soon afterwards had a partial gastrectomy followed by a Roux-Y bypass a year later. Although it got rid of the dead flacid tissue at the bottom of the stomach, I still suffer the cruel symptoms of GP daily which is furthermore complicated by my diabetes. I would love to compare notes or hear from others who also have diabetic GP and have had partial gastrectomies also.

    Your blog is a great read / find as it is comforting to know Im not alone. What I find hard to deal with is the sense of loss this disease has left me with as I am unable to work and Im half the person I use to be. Add to that the hopelessness as there is no cure out there. I have also sufferred a heart attack earlier this year so Im aware that my health is deteriorating even though Imbjust 39 years old.

    Any advice or responses will be much appreciated.

  49. Posted by: Lauren
    March 20th, 2014 at 4:34 pm

    I have been living with idiopathic GP for 18 years. I lived many years with only GP unable to take any of the treatments on the market as I was allergic to them and propulsid got pulled from the market. 8 years after I was diagnosed with GP I started having sudden drops in blood pressure. I was finally diagnosed with a form of dysautonomia. GP was just my first symptom. It seems a number of individuals with dysautonomia started with GI issues.

  50. Posted by: robbin stinespting
    April 22nd, 2014 at 2:37 pm

    I have recently been diagnosed with moderate gastroparesis. My first thought was this is my death sentence. At 49 fighting fibromyalgia and arthritis the last thing on my mind was this. I have been searching alternative treatments because the medicine reglan is scary. I found comfort in your blog thanks

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