I’ve said it before: the internet can be a scary place for GPers. Pouring through the message boards and Facebook pages often leaves people feeling confused, hopeless and afraid. You’d never know from most of what’s out there that gastroparesis can get better over time (probably because the people who are feeling better are too busy enjoying it to post about it!). That’s why I’m so grateful that Shana agreed to let me share her story with all of you. I hope that reading about her experience gives you a spark of hope and reminds you why we “never say never.”
When were you diagnosed with GP? What “kind?”
In May 2008 I took a vacation to Hawaii with a group of friends. On the last day of our trip I was walking through the airport and started to feel tired and feverish. The trip back was uneventful, but I felt like I was coming down with something. The next morning, I was getting ready to go for a run when I started vomiting suddenly. I could not keep down food or water for three days straight. I finally went to the doctor and was told I had the flu. Although the virus subsided within a week, I could tell that something was still wrong. I knew the amount of pain, nausea and vomiting I was experiencing was not normal.
I spent the next three months seeing countless doctors, undergoing numerous tests, and visiting the ER. One day I was on the phone with my friend who was in med school and she said “It sounds like you have Gastroparesis.” It was the first time I had ever heard of the condition, and she was able to diagnose me in five minutes after my GI doctor had been searching for months. The first week of September, following a gastric emptying study, I was officially diagnosed with Gastroparesis.
Although I met the textbook definition of post-viral GP, for some reason the first GI doctor did not think the illness could have caused it. He decided it was idiopathic, and that was my official diagnosis. I have since switched GI specialists and my current doctor labeled it “post-viral idiopathic.” He believed that although the GP was caused by virus, there was no way for him to tell if I was going to get better.
What were your symptoms?
The pain was my first clue that something was wrong. For the first months the pain was constant since I had no idea how to eat for GP. I was also constantly nauseated, but truthfully didn’t have many problems with vomiting since I really didn’t feel like eating. I lost 17 pounds in one month. Once I started experimenting with food, I started having problems with vomiting. Before I was sick I worked out regularly, but I soon discovered with GP I would experience extreme nausea with running or other physical exertion. Even after I was able to get my symptoms under control I still experienced early satiety.
The early satiety and lack of hunger caused another problem. Since I didn’t feel hungry, I often forgot to eat. Because the GP diet is so carb heavy, I would often “crash” out of nowhere and get really moody. This was my warning that I had gone too long without food. Other times, I wouldn’t get a warning and I would faint out of nowhere. Because of this, my doctor started wondering if undiagnosed diabetes was the cause of my GP. It wasn’t, and it was comforting to know I didn’t have diabetes on top of everything else.
[CS note: Reactive hypoglycemia, also called “crashing” or low blood sugar, is a common issue for all types of GPers, not just diabetics. Eating small, well-balanced meals at regular intervals — rather than skipping meals or relying on all-carb snacks — will help alleviate blood sugar swings, which as Shana mentioned can cause crankiness, aggressiveness, tiredness, dizziness, sweating, shakiness, headache, and blurred vision. Blood sugar swings can also cause cravings and result in overeating.]
How did you manage your symptoms?
At first I didn’t manage them at all. I knew the basics for how to eat but I couldn’t adhere to the GP diet. I would either refuse to eat anything or rebel and eat everything. Either way I paid the price. Reglan was exceptionally effective in relieving my symptoms, but an unexpected side effect was uncontrollable drowsiness. The first couple times I tried taking it I slept for 12-18 hours straight. Effective, yes, but not at all practical.
In fall of 2009, a year after my diagnosis, I felt like I was at the end of my rope. I was feeling increasingly frustrated and incredibly isolated. I was in my second of year of graduate school working towards my Master’s in Counseling, and I decided to take what would have been my own professional advice: get counseling! I attended a drop-in session at the university and I pretty much did nothing but complain about my GP for 40 minutes straight. I was so angry about being in my mid-twenties and so sick. Somewhere in my rant I stated that I didn’t want to limit my diet because I didn’t want to seem like I was chronically ill. That’s when the counselor looked at me and said “But you ARE chronically ill.”
It was that quintessential “Ah-ha” moment. I don’t know what clicked, but I started keeping track of everything I ate so I knew which foods caused symptoms. It took several months, but I figured out what foods to eat, how much to eat, and which foods were definitely off limits. I ate the same thing almost every day. I must have drank gallons of ginger tea. My diet did not have much variety, but as long as I ate the same foods every day I wouldn’t get sick. It became habitual and completely routine, and I was virtually symptom free all the time as long as I stuck to my diet.
I also started asking for help. I asked co-workers and friends not to offer me foods that I might find tempting. Social events were always challenging, so I really leaned on those closest to me. My friend Maggie literally slapped a cookie out of my hand once at a party. It shocked me at the time, but I realized after that she saved me from a night of agony. If we were going out to dinner with friends, my boyfriend Brian would either send me their menu online or get the restaurant to fax us a copy of the menu so I knew what was available before I even sat down to order. Maggie and Brian probably helped me more than anyone else during this time.
Did you think you’d “get better” someday?
I felt like I had to be realistic about my prognosis not only for myself, but for those I care about. I met Brian the week I was diagnosed and I tried not to keep him in the dark. When things started to get serious, we pretty much had a conversation that consisted of “If we are going to date, you are probably going to see me very sick, very frequently. I also might never get better.” This didn’t scare him off at all. He knows more about my GP than anyone else in my life.
My initial interactions with the first GI doctor left me feeling discouraged about every getting better. He wanted to put a J-tube and send me on my way. He said “You’re never going to get better, so you should get used to the idea of being tube-fed for the rest of your life.” When I expressed concern about my weight loss, he said “Most women would feel lucky to be in your shoes! You should be grateful you will never have to worry about your weight again.” I was horrified, mainly because I was not even close to being overweight, but I had reached a point where people started to say I looked too thin. I never went back to him again.
My current GI doctor was cautiously optimistic. He wagered that I would see some improvement within the next decade. He was vague, but supportive of me managing my GP with diet, and considered a J-tube the absolute last resort. Thankfully, he understood that my weight loss was not a blessing and that I couldn’t afford to lose any more weight. The last time I saw him was in 2009 and we left with a simple “let’s wait and see” conversation. I didn’t really have much hope.
[CS note: Sadly, Shana’s story isn’t uncommon. Too many doctors are ignorant and insensitive when it comes to GP. In terms of weight loss, please know that while it’s a problem for many GPers it’s not a given — some people actually maintain or *gain* weight after a diagnosis. On another note, the vast majority of the five million Americans with gastroparesis are not tube fed.]
When did you start noticing an improvement in your symptoms? Was it gradual or sudden?
It is hard to say when I started feeling better because I managed my diet so precisely for almost two years. In January of this year, I read a post on the G-Pact Facebook page about a female athlete with GP. Before my diagnosis I was running four miles per day, and had just placed second in my weight class in a Judo tournament. My symptoms had prevented me from exercising at the same level of intensity, so I just stopped exercising aside from the occasional hike or walk. After I read about this athlete, I decided that if she could do it, so could I! I started out slowly, and over the past 5 months I worked up to exercising 6 days per week. I made a rule for myself that I had to work out, but I would not work out if I was sick. Therefore, I had to be meticulous with my diet.
I saw definite improvement to my general well-being after I started exercising regularly, but if I slipped off my diet I still had symptoms. My actual realization that I was “better” came on suddenly. On April 16 I broke down and shared a cupcake at a work event. I definitely paid the price. Exactly one week later, on April 23, I attended a housewarming party. I was having a really good time, socializing and laughing and there was just way too much amazing food at the party. What started as a calculated risk (“just one slice of this amazing cheese!”) led to a night of overindulgence. I was pretty certain I would suffer, but strangely enough I didn’t have any symptoms at all other than feeling really full.
I didn’t tell anyone about this, but then next week we went out with a group of friends for Brian’s birthday. I had eaten in advance, but the pizza they ordered just looked amazing. I had a slice, and I was fine. I haven’t had any symptoms since I ate that cupcake on April 16, and was completely symptom free one week later.
Do you attribute the improvement to anything specific that you did or changed?
I think incorporating exercise helped me manage my symptoms better, but I don’t think it “cured” me. I honestly have no idea what brought on such a sudden improvement. I’m still rather shocked I am feeling this way.
How are your symptoms now?
I am writing this today, exactly one month since that housewarming party, and since then I have not had any GP symptoms other than early satiety. I attribute that to being used to eating small, frequent meals on the GP diet. My symptoms seemingly vanished.
Are you still actively doing things to manage the GP (medication, lifestyle, dietary)?How has your diet changed/what foods have you been able to add?
It took so long to develop my “GP Routine” and I guess old habits die hard. I am still eating the same breakfast every day, but that is purely out of habit. Even though I am sure I could eat full-fat yogurt I am still buying non-fat. Some things are hard to change. I am still exercising 5-6 days per week, but that is also routine. I have only had two cups of ginger tea this month. I am still taking chewable vitamins since I have a huge bottle.
As someone who loves to cook, I felt frustrated with the GP diet as it relies heavily on packaged, processed foods. I ate lots of simple carbs, canned or boxed soups, and drank protein shakes. I always thought that if I got better, the first thing I’d want was a burger, fries and a shake. I’ve actually been eating salad most days of the week. I did have a burger last Friday night, but it really didn’t interest me. All I want is fresh vegetables and salad. I haven’t had symptoms with anything I’ve added, so I’m just going with the flow. I’m having a hard time eating food that comes from a box, package, jar or can. I want as much “real” food as I can get.
Anything else you’d like share about your experience?
Even though I have been feeling fine for a month, Brian confided in me that he did not want to tell anyone I was better just in case I relapsed. I had the same hesitance at first, but last week I broke my silence and started telling my friends and family. I am definitely enjoying my new-found dietary freedom, but since I cannot explain this sudden “remission” I believe in being cautious.
When I talk about GP, everyone tends to focus on the physical symptoms. Despite living with chronic pain for years, I feel the social implications of the condition are so much more challenging to manage. Every holiday, social gathering, or special event focuses on food. It becomes challenging or impossible to participate in potlucks, weddings, birthday dinners, or to even go out on a dinner date. Traveling becomes incredibly challenging. I went to Costa Rica last summer with a suitcase full of GP safe food and crossed my fingers that everything would make it through customs. Throughout the past three years the biggest challenge was overcoming the need to fit in and eat what everybody else is eating at social gatherings. During the past year I have had a much easier time advocating for myself or simply using an excuse such as “No thank you, I have a food allergy.” It can be awkward and embarrassing to be constantly explaining your medical condition. The worst was when people would comment on my weight loss and praise me for being so disciplined. One co-worker always kept saying “I wish I had your problem! You are so lucky!” If she had spent a week too nauseated to get out of bed I think she might have changed her mind.
I know you say it all the time, Crystal, but I have to echo that a GP diet is not one-size-fits all. I had a lot of trouble with full-fat nut butters or trivial amounts of oil. Lean ground beef was never an option, and fizzy ginger ale only made my nausea worse. Conversely, I could eat many vegetables as long as they were exceptionally well cooked. A glass of wine never aggravated my symptoms either. Managing my symptoms took a lot of time, patience, and trial and error, but it can be done. Once I stopped being angry about the cards I was dealt, I realized that this was something I couldcontrol. I want to encourage anyone who is struggling with GP to be willing to experiment to find what works. It took time for me, but my quality of life dramatically improved.
Because of my work as a counselor, and also as a person who has *hopefully* recovered from a serious illness, I cannot stress the importance of a support system enough. Mine was critical in surviving this experience. My family is very small, but the outpouring of love was substantial. I do believe my illness strained some friendships, but I feel grateful for the relationships I that have endured. I honestly don’t know what I would have done without having Brian in my life. He has been my cheerleader, shoulder to cry on, and also provided a decent proverbial kick in the pants whenever I was feeling sorry for myself. He met me the week I was diagnosed, so he has never known me any way other than ill. I am really looking forward to him getting to know me as a healthy person.
[CS note: I’d like to reiterate Shana’s point about finding what works for you. While the general guidelines help almost all GPers, specific tolerances vary greatly. Some people can tolerate quite a bit of fat but very little fiber and others, like Shana, are the exact opposite. I even have clients who can eat chocolate cake but not skinless chicken breast. For some, symptoms are exacerbated by lactose, fructose, or other “FODMAPs,” while they don’t pose a problem for others. This is why, despite many requests, I’ve never shared exactly what I eat. All of us have different tolerances and all that matters is what works to minimize YOUR symptoms and maximize YOUR health.]