Gastroparesis Survey: Complete Results
As promised, here are the complete results of the Gastroparesis Survey…
I’d like to emphasize that there was nothing scientific about this survey; it’s simply self-reported data from 77 people living with gastroparesis. That being said, I think sharing this kind of information can help each of us better understand our own experience with the disease.
You can download a printable PDF version of the complete results here. It includes all of the raw data, plus graphs/charts, and the full answers to questions about treatment, diets, and advice.
For those who have been dealing with GP for several years, most of the information probably won’t be too surprising. But here are a few things that stuck out to me:
- Though vomiting is often cited by doctors as a main symptom of gastroparesis, over 60% of those surveyed indicated that they rarely or never vomit. I’ve heard a number of people question their diagnosis because they don’t vomit, so I think this is important info. Fullness was actually the most widely reported symptom in the survey, with 93% saying they experience it often or always.
- I’ve heard several doctors say that gastroparesis “doesn’t ” or “shouldn’t” cause pain. However, 85% of respondents said that they often or always experience stomach pain and 48% often or always experience chest pain. Obviously I can’t say if that pain is a direct result of the gastroparesis, but it’s clear that the majority of GP patients do experience pain for whatever reason.
- Nearly 75% of respondents indicated that the impact on their social life and relationships is one of the difficult aspects of living with gastroparesis. This was second only to figuring out what to eat. Yet this part of the disease, the way in which it affects everyday life, is completely ignored by the medical community. I think this is an area where we as patients can be especially supportive and valuable to each other.
- Over 88% of those who responded were female. I can’t say with any certainty that this is related to the actual proportion of males and females with the disease, but in general is does seem that gastroparesis disproportionately affects women. I have heard that the hormone progesterone slows gut motility, so perhaps there is a link there that has yet to be discovered. Just food for thought!
Big thanks to all of those who took the survey. I hope everyone finds something interesting in the results, or at least feels comforted in knowing that there are others in the same boat. Please feel free to share any additional comments or questions that you may have.
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9 Responses to “Gastroparesis Survey: Complete Results”
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Pretty interesting stuff, I wouldn’t have thought probiotics would have helped as much. I was actually pondering about that a bit since a lot of hits on my blog seem to be coming from people searching about probiotics for gastroparesis.
The PDF looked very pro, btw
!
Thanks!! I have definitely heard from people with GP who have benefited from probiotics, especially related to the bloating and constipation. Mostly Align in particular, but I think that’s because GI docs are recommending it by name now.
This survey is fascinating! Nice job putting it all together. I am saving that PDF for future use. It’s really comforting to see a lot of those things on there, like the low incidence of vomiting and high incidence of fullness. And it’s just so strange how differently the disease affects every person and what different treatments can do for different people.
very interesting and helpfull, thanks for putting it together. has any one heard of the drug procalipride?
Hi Brigitte,
I hadn’t heard of Prucalopride before but I Googled it after you reading your comment. It’s apparently a “sister” drug to Cisapride, which helped a lot of people with GP before it was pulled from the market due to the potential for fatal cardiac side effects. It’s being used in Europe but has been rejected for use in America by the FDA. I’ll be sharing more in a follow-up post this week.
Thanks for the info!
Crystal
[...] under the impression that gastroparesis doesn’t or shouldn’t cause pain, my informal Gastroparesis Survey indicated that it’s actually one of the most commonly experienced [...]
Pain,,,,,, everyday……. that is the one thing the Dr will not acknowledge with my daugher. It makes me so angry because the crazy Dr says that the way my 17 year old describes the pain it is not “typical” of Gastroparesis????? Geez, sometimes I have a difficult time describing pain that I’ve had. It is very aggravating. Quality of life is greatly ifluenced by pain and we are stuck with this Dr because she is the one of three in our state and is by far the nearest. Really is hard…..
I started googling this morning searching for answers. I have been suifering fromGP fora few years now. I am female and I do suffer frequently from severe stomach pain, nausea, bloating, and burping. I cannot tolerate probiotics. I has Greek yogurt 4 times in 8 days and it has sent me on a pain stricken weekend from hell. I have tried florastar and the pearls and yogurt and cheese n all come back with the same result… Pain. I have tried liquid diets, stopping nexium, zegerid, Zantac. Zofran is my friend. I am pregnant right now and I am suffering from severely low blood sugar due to my inconsistent and slow moving stomach digestion. If I weren’t pregnant I could get by eating bread and broth for days, but I can’t now. I get shaky, nauseous, dizzy, my eyes site is effected, I get a headache and I see stars. I’m forcing food down my throat n getting stomach pain as a result. It seems anything I put in my mouth right now does not seem to be ok. So I’m stuck. Oh, n did I mention the probiotics have constipated me so now it’s been 4 days since I have had a bm. Even though smooth move recommends not using it with stomach pain n nausea I have to use it. I’ll let you know if it helps.
We have found a doctor for my husband that has been suffering from GP since last March 2010. Currently on Reglain, which has helped but has harsh side effects. We are in mist of changing meds. will update when we see how new meds work. Started on “probiotics” to help with digestive track, and uses antibiotic to help with bateria in stomach, digestive tract. This has helped my husband to tolerate solid foods much better. His weight loss has been significant , over 70 lbs thus far. We are maintaining weight since we found new dr. and he has helped us with new meds and meals.
Foods: (we try to intake 1700 calories day)
Liquids: Ensure Plus 3X day and Carnation Breakfast 530 calories 2X day (we order this from company – in small 6oz cans) Excellent for breakfast !
Soft cooked skinless chicken, turkey (cooked in oven) no oils
Salmon – cooked in oven
Rice & Chicken – excellent ! ( I use chicken broth to flavor)
Macroni & Cheese – excellent so far – quick lunch meal with piece of soft bread & a snack
Soft scrambled eggs and grits , piece of bread/jelly (can’t diagest toast well)
Some soups, chicken noodle
Snacks: Jello, puddings, fat free yogurt, V. Wafers, G. Crackers, Sherbert Ice Cream
Your website is great as it helps to know you consider other family members who also suffer with the patient, loved one. This is a change for everyone in the family, due to most family events revolve around “foods” which most patients with GP can’t eat certain foods. I’ve learned to “plan” and have my husband’s meal ready so he feels better about family events. We also make sure we have a backup , quick meal plan….such as M & cheese – microwave type ! Excellent for times you need something fast !
Hope this helps, for the most….you have to use trials to find what works, and when GP flares up, go to liquids few days. I’ll be glad to share other methods we’re trying to help control my husband’s GP. Email me at bonniewvause@yahoo.com