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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
6/14/11 8:05 P

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Gastroparesis is often due to vagus nerve damage (the longest nerve in the body that sends signals to the majority of the internal organs), and one way that it can be damaged is viral infections. A person can be born with it, have physical damage to their head/neck, get it from abdominal surgery, or several other ways.

I did see a nutritionist after I was diagnosed, and later saw another. When I saw the first one I was in bad shape so all she could say is eat things that are easily digestable and/or liquids. Later I went to another, but I had already found SP and had set the limits that seemed to work for me, so she just verified and tweaked those. The big problem is that every case of GP is so different, so you have to do trial and error to find what works for you. This means starting with easy to digest foods and trying new foods one at a time now and again. I found that by looking at nutrition labels religiously (if it doesn't have a label, I don't eat it) and entering EVERYTHING into the nutrition tracker here, I was able to figure out what seemed to work. I also started tracking my digestive ability (special goals page, 1-5 scale) so I could go back and compare good days and bad days with what I ate, how bad my stress was, etc.

I have reactive hypoglycemia in addition to gastroparesis. So I need to eat about 6-10x/day, a few semi-larger meals and a bunch of little snacks. If I eat a large amount at once, I don't feel well. If I don't get enough mini meals, I don't feel well. But if I eat too many larger mini-meals I don't feel well. So I just pay attention to how I'm feeling and try to work with it. I've also found that the more stressed out I am (which high-stress is standard in my life) the worse it is. So I spend most evenings watching tv and relaxing instead of going out anywhere. It is my de-stress time from long crazy days at work.

I've also found that maybe 50% of doctors (across many fields) have heard of gastroparesis, but only a few actually know what it is. I've probably had it my entire life, but it wasn't until last year that it flared to the point of doing serious damage. My primary care doctor refused to listen to me, so I found a gastroenterologist (I lost track of how many I saw at the specialty clinic) who took a month of tests to figure out my first 4 diagnoses, then a few months later an endocrinologist found 3 more - yet the specialists are stumped about many of my symptoms they haven't accounted for.

Best wishes to all of you, and be sure to check out www.g-pact.org if you haven't yet. They have patient advocates and they post information on facebook often.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


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NEALSNEWS's Photo NEALSNEWS Posts: 74
6/11/11 12:38 A

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Hi Michelle,
I had pancreatitis and Clostridium Difficile about three years ago and have had terrible side pain since about 6 months before I ended up in the hospital for 12 days. I wasn't diagnosed with gastroparesis till some time later (I was on my 4th or 5th gastroenterologist). I have been to Cleveland Clinic twice and have been to a gastroenterologist in Nashville who was supposed to be good at "out of the box" cases but still was living with terrible pain.
I have tried every diet from Jordan Rubin's "Restoring Your Digestive Health" to liquids with no help. I began vomiting about a year and a half ago when I would get too much on my stomach. My husband and I were feeling desperate when I went to a neurologist in a nearby town. He stuck needles in my back which relieved some of the pain.
Cleveland Clinic told me I had too many eosinophils in my upper and lower bowel and recommended I get my entire right side blocked at a pain clinic. I felt that was masking what was killing me.
The neurologist said he could put Botox in my right side which would give me about 1 year of relief but he asked me to try going to an acupuncturist that practiced traditional Chinese acupuncture at least two times. Tuesday was my fourth visit and my pain level is about a third of what it was. My energy level is unbelievable and I no longer have to crash on a heat pad at about 3:00 in the afternoon because I can't take another minute of the pain. You might want to check into this. What works for one might not work for another. My damage is supposed to be from the C. diff which temporarily paralyzed my jaw and locked my mouth shut, which damaged all the muscles on my right side and paralyzed my stomach. (something to do with the vagus nerve.) I hope you find help. Pancreatitis is the worst pain I ever had! Don't lose hope--there is help out there for us!


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6/10/11 7:47 P

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Hi, Michelle!
Glad you found us but soooo sorry to hear that you, too, have been diagnosed with this awful chronic condition. I hope you have a great doctor that can give you some options. There's alot of info on the web about it. The diet can be very hard to follow at times (esp since i'm vegetarian...ugh)
I have a pretty bad case of gp and and entirely slow "gut"- colon, intestines, etc. gallbladder already removed for dysfuction.
I just got back from a leading motility clinic (1 of only 5 in the US) -Temple University- this week. I go back next month for 4 days of testing & then 2 weeks later for more results and what options I have- unfortunateley with gastroparesis not much exists....

Wishing you a pain free weekend! If you ever want to chat just stop by my page.

Amy

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6/10/11 4:55 P

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Hi Michelle!
I love your profile pic, so cute!

I was diagnosed with GP in December. I think the diet has been the hardest thing to get use to.
I miss a lot of the favorite foods I use to eat, but can't anymore, but it has gotten easier for me with time. I think another challenge for me will be missing all the fresh summer produce; I use to love all those things, especially berries, but can't eat them any more. This will be my first summer officially diagnosed with GP.


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THIKCHIC's Photo THIKCHIC Posts: 89
6/6/11 12:13 A

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HI Again, tested for sugar. I was thinking of asking about that specific test. Did you have to ask or did they just do it? What did that test consist of? Was it just another blood test? Sorry to hear no insurance I know that is hard. My Sister does not have any. I think I would go without if I didn't have any.

Has anyone been to a dietitian or nutritionist? If so, has it help at all??

Thanx! Susan

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6/3/11 9:25 P

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Hi Susan! emoticon

No candy, no sweets, no raw fruit or veggies, no corn, no strawberries, no whole wheat items, no cooked fruits or veggies that are high in fiber, etc. I hear alot of no's, but where are the yes's. Some candy is low fat, but hard to digest and then there is the sugar thing. I have been tested for sugar, but nobody every said it was high. I have sure had so much blood draw you think they would have noticed by now. emoticon It is a trial and error game and a wait and see game. emoticon

Good luck! I don't have any insurance. This is a big problem.

God Bless and Keep You!!
Michelle


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THIKCHIC's Photo THIKCHIC Posts: 89
6/3/11 8:13 P

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Hello Michelle, my name is Susan. Welcome to the team! emoticon
I am affraid I will not be much help to you, I am newly diagnosed also and just learning. But if you look at a lot of the topics listed in the Teams outline those are helpful. My MD was not to specific with what to eat either, stay away from fat and fiber. Okay, but wait, what is all that?? Does he have no idea that I am clueless in the eating department to begin with?? I am now trying to get my insurance to approve a RD, just so I can get some sort of better handle on things. I mean I do get it, but I want to REALLY get it so as I am not so miserable all of the time. I do know what NOT to eat. For me that is Sweets, oh yeah, I cannot eat candy, how sad is that, right?? ; ( Good luck

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6/3/11 7:23 P

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Hi!! Everyone!!

My name is Michelle. I am a 42 year old christian SAHM. I was diagnosed with chronic pancreatitis 5/17 and gastroparesis 6/3 (today). Talk about stomach trouble. I was thrilled to find hear gastroparesis...for just a minute. It meant I was not crazy, there was something wrong other than pancreatitis. Then I read about the symptoms, diet, treatment etc. All I can say is "What does this mean I can eat?" I was told low fat/low carb, no spicey foods diet for pancreatitis and low fat/low fiber, easy digestible for gastroparesis. What does this leave?

I did feel better, but now I am just more confused. emoticon

God Bless and Keep You!!
Michelle


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