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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
4/26/12 4:33 A

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I'm not sure I'm the best to judge off for this, because it is suspected I have a malfunctioning autonomic nervous system (dysautonomia). Thus my body reacts incorrectly to many things. For instance in the past 2 1/2 yeears I've had two infections, one bad and one that was massive and lasted for at least 3 months, and I never once cracked a fever. It seems my body can't recognize an infection. So my actual body temperature isn't a good indication of anything.

But I know that when my body is working hard to digest food, specifically a meal that is a little too much (fat, fiber, size, etc), even though my temperature doesn't change or falls, I get horrible chills. It's because so much of your body's energy is being diverted to your digestive system that the rest of your body reacts to it. I've found that when this happens, if I suck on and eat pure simple carbs (jelly beans, candy hearts, gelatin fruit snacks, etc) my body uses that energy to compensate and the chills go away in a few minutes, though sometimes causing sweating and feeling hot. Simple carbs like sugars can be absorbed through the mouth and stomach without being digested, so it is a way to get a fast burst of energy without needing to digest food. Once your body digests what you had eaten then you'll get energy from that so you don't need a lot of carbs. Sometimes just 5-10 jelly beans is enough. It's something that you'll have to try and modify to fit how your body is reacting, but once I figured it out then when I felt the terrible chills and started shaking I could do something about it.

I hope this helps.

~ Sheri ~

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


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SIERRA551 Posts: 16
4/23/12 9:23 P

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Hi
When my gastroparesis is flaring I get really bad chills. Does this happen to anyone else? Do you run a temp?

MOMMAMONKEY04 Posts: 5
3/22/12 2:16 P

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Try www.livingwithgastroparesis.com I have leaened TONS from this site. Her youtube videos are also super helpful. For myself, acupuncture has tremendously helped my symptoms.

1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
1/18/12 11:04 P

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Any doctor who has the ability to write a prescription for Domperidone should know where it can be filled in the US (only a handful are approved to make it during the final studies). My doctor faxed the forms to the pharmacy and they contacted me for payment and shipping information.

~ Sheri ~

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


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SIERRA551 Posts: 16
1/18/12 6:31 P

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My Dr gave me a script for Domperidone. She said I would need to get it from Canida. Any
Body know of a pharmacy I can send my script to ?

SPARK_COACH_JEN's Photo SPARK_COACH_JEN Posts: 66,075
1/17/12 11:57 A

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Bee,

It sounds like you're working closely with your doctor on a plan to manage your condition, which is good. I'd recommend asking your doc for a referral to see a registered dietitian who can help create a meal plan specific to your needs based on your medical issues.

Hope that helps,

Coach Jen

"You may have a fresh start any moment you choose, for this thing that we call "failure" is not the falling down but the staying down." Mary Pickford

"No matter how slow you go, you are still lapping everybody on the couch."
1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
1/16/12 4:39 P

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Glad you found the team. There is a lot off information in our forums, including about the GP diet and how to figure out what foods work for you.

If you are not dropping weight dramatically then you are probably digesting much more than you realize. Only simple carbs can be absorbed through the mouth and other areas outside of the jujenum (1st part of the small intestine) while everything else must reach the small intestine before being absorbed. So either you're eating plenty of simple carbs or you've gotten enough nutrients into your small intestines even when you throw some of it up. It takes about an hour for the first part of what you ate to pass into your duodenum, and 4 hours (in a 'normal' stomach) to pass almost all of the food. What did your gastric emptying study show? If it's moving slower than that and you are throwing up almost everything, then you'd be dropping weight significantly.

I'd suggest talking to your gastrointestinal specialist and getting more tests done. If you've had it for 3 years but haven't followed the treatment or the diet, then it might be something else. Many must live on the diet and have treatment within a few weeks of it starting or become very ill and hospitalized. I just want to make sure you've gotten a full and complete diagnosis.

~ Sheri ~

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


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JWICK18 SparkPoints: (0)
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1/16/12 9:53 A

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Bee... Welcome!! Living with GP is hard! And living with GP and IBS is even harder!! I still do not comply with all of the diet that I should, but am learning to tailor my diet around my life. I was eating 5 to 6 smaller meals a day. My doctor said to avoid pineapple, oranges, caffeine, if you eat steak, eat fillet or something similar that is very lean. I am to a point now I am pretty well eating 3 meals a day with one snack in the afternoon. Right now, I am pretty well drinking my breakfast. 1 cup of coffee, maybe some ginger tea (good for gastro problems), a nutrition shake. Lunch I am eating peaches or pears and cottage cheese or tuna, something very light. Crackers and pb for a snack and then a "decent" dinner. Chicken, salmon and veggie or sweet potato. In the year I've been diagnosed and on Domperidone I've learned very quickly what I could do and what I can't. What I can eat and what bothers me. I try to limit and/or stay away from what bothers me. I have even found what alcohol bothers me and what I can still have with limits.

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BEEGRACE9's Photo BEEGRACE9 Posts: 17
1/15/12 10:05 P

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Hi everyone, I'm new to this team. I was diagnosed about 3 years ago when I was in college, but pretty much ignored everything the doctor said and continued living the way I had prior. Of course that meant vomiting after most meals. Recently I got to the point where I couldn't take it anymore and my entire day was revolving around whether or not I could get to a bathroom in time if my food came back up. Along with GP I also have IBS, which causes a whole separate host of awful symptoms. Basically my entire day is spent thinking about my digestive issues. I am getting extremely depressed about it. I haven't lost much weight because I usually don't vomit until about 30 min to an hour after I eat so my doctor says I have absorbed a lot of the calories by then. Now I rarely even eat 2 meals a day (and by meals I mean like 1/2 a cup of white rice) because I'm so sick of throwing up and feeling miserable. I take dexilant daily (thank god for free samples from my GI doc), erythromycin (I always thought it didn't work because I continued to vomit, but when I stopped taking it I couldn't keep anything down at all, so I guess it works a little), and I take zofran pretty much around the clock to control my nausea. I find myself going thru what seems like periods of semi-normal GI function and feel great, and then periods where I definitely know I have GP.
Does anyone have any advice about how to comply with the GP diet and way of life? I am in my early 20s and it is so difficult to maintain a normal quality of life. I know I can no longer go on getting sick multiple times a day. I NEED to make a change.
On the bright side, I just had a repeat EGD (prior one was about 4 years ago) and they didn't see any tissue damage to my esophagus from all the vomiting! PHEW!
Please help! Any advice is MUCH appreciated. I am desperate now.

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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
1/11/12 11:53 A

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The good news is that Domperidone should be available in the states sometime soon (as in a few months to a few years) as it's in it's last stages of getting FDA approval. When my doctor put me on it he had to directly contact one of the few pharmacies that could make it themselves and they mailed it from Pennsylvania to my home in Minnesota. No, my insurance isn't covering it (nothing can be covered unless it is FDA approved) but about $80 for 2 months of meds (4x/day) is better than the $200+/month for the Dexilant (PPI, dexlansoprazole) that is approved and covered!

The bad news is that medications have to be tailored to the suspected cause of the GP. Since it appears my GP is a symptom, not the actual diagnosis, the Domperidone is not working except to increase my want for food, which means I have to force myself to not eat because the pain and problems just get worse the more I eat. The Dexilant is actually making my acid reflux horribly worse. Basically being on these meds is a little worse than how I was before. I'm flying back to Philadelphia in a week and a half to see him again and I have no idea what he will consider trying, or if I can get him to put me back on the Protonix (pantoprazole) that was actually working and get me off the Domperidone. Either way, it appears I have to get the other condition diagnosed (which is proving to be incredibly difficult!) to be able to consider other possibilities for treating my GP.

Basically, just because one treatment works for someone, please know it might do more harm than good in other cases. (Domperidone can cause pretty bad heart problems, so follow-ups must happen to watch for those complications.) That's why it's important to work with a doctor who can pay attention to what's happening. If your doctor can't help, keep looking to find someone who can. That's how I was able to get into my doctor - I called Temple University Hospital in Philadelphia and explained my case and I couldn't find a doctor in Minnesota that could help me, so they got me in.

~ Sheri ~

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


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CRAFTLADY8 Posts: 18
1/10/12 5:51 P

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Hello Everyone, I am not new to this site, but have neglected to track everything for a while. Now that I have gain back most of the weight I have lost, time to get cracking again.
To all that have questions regarding Domperidome and if it works. I was on Reglan and it made my so sleepy - had to take a nap in my car for my lunch break - a little cold in the winter. Changed to Domperidome, works great. Only I have to get it through Canadian Pharmacy with a prescription by my Dr. He has been great. And my insurance won't cover it. oh well. I had stomach pains for over 8 yrs before we figured it out. It still rots to get flares. Keep pushing to get your answers - no one will do it for you.

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GUTHRIESM's Photo GUTHRIESM Posts: 47
1/10/12 1:59 P

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Hiya,

Glad to see more people finding this group. Domperidone can be purchased internationally without a prescription. If you are settled on your dose and comfortable with it, you can find out where to get it via groups like G-PACT.

Sorry you are having such a rough time with doctors and food. I am also re-learning how to eat. It isn't easy but you can do it!

Don't think of organ donations as giving up part of yourself to keep a total stranger alive. It's really a total stranger giving up almost all of themselves to keep part of you alive. ~Author Unknown

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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
1/9/12 2:31 P

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Glad to see you here Jenn. I've been on domperidone for just shy of a month and it hasn't done anything. Though I now have other doctors working on another diagnosis that makes gastroparesis a symptom not the main diagnosis. If you can't find another doctor who can give you the domperidone, you may end up travelling to find one. No reason to be suffering just because you lost your doctor. If you send me a sparkmail to remind me, I'll see if I can find my paperwork and if it has the names of the doctors doing the study I'm in. My doctor is in Philadelphia (I live in St Paul, MN) but I'd bet they're scattered all over. That might help you out.

If you need some ideas for what foods to try, be sure to check out the other threads in our team. Not everything works for everyone, but it might help give you some ideas.

~ Sheri ~

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


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JWICK18 SparkPoints: (0)
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1/8/12 7:51 P

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Hi, I'm Jenn and I am new to the site. I was diagnosed about a year ago. I have been on domperidone and it has been a miracle pill. My doctor was closely monitoring it, but then I got the news that my doctor is no longer with the clinic and was the ONLY doctor in Nebraska doing compassion care to be able to prescribe domperidone. I have been learning what I can and cannot eat and what I can eat in moderation. I think that the pill helps a lot wherein I pretty well eat when I want. I was told to eat small meals several times a day, but can usually get away with 3 small meals a day. I also have fibromyalgia which is like having a double whammy!

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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
1/2/12 7:30 P

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To be honest, severe gastroparesis means your digestive system has completely stopped working and you can't take in any nutrition orally and are on TPN (total parenteral nutrition where you get nutrtion though a central line IV). If you're still able to eat food, it's not as bad as it could be.

I suggest not drinking fluids while eating solid food. If you eat then drink then eat then drink, it layers up the food and liquid in your stomach and makes it harder to digest. You should drink fluids a half hour before eating or wait until after you're done eating. This excludes tiny sips to help you swallow the food, of course.

One question for you though - do you have dysphagia (problems swallowing) due to problems in your esophagus? If so, that could be a reason why your doctor told you to sip liquids.

As I said before, you need to find what works for YOU. I can't have ground beef, fish isn't going well anymore, and even chicken is getting rough. I also can't have cooked veggies (while others can), yogurt is getting difficult, I can't get down ensure unless it's cut with water, and even drinking water often feels like I'm trying to digest knives. Others just remove high fat and high fiber foods and can still live a pretty normal life. If you read the other forums in our team I've explained how to figure out what works for you.

~ Sheri ~

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


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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SIERRA551 Posts: 16
1/2/12 7:20 P

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Does anyone else run a fever sometimes with a GP flare. I some times run anywhere from 100 up to 103 degrees. I get severe chills as well

SIERRA551 Posts: 16
1/2/12 6:29 P

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Thank you, my doctor said just the opposite. He said be sure and sip fluids all thru the meals
To wash food down. I bought a scale today to weight my food. Are the V8 smoothies and V8 splash good to drink? If so should I drink 4 or 8 oz as a snack? Please let me know your thoughts. I was diagnosed with severe Gastroporisis. He told me 4 oz of fish chicken or ground beef.
Thank you

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1/2/12 2:20 P

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Welcome to the team!
I was diagnosed a little over a year ago. My GI doctor told me that by "small meals" that means no more than 6-8oz per food within an hour. He also told me not to drink water or anything with my meals; that it just makes the food float around in the stomach more. I sip just enough water to take my pills before a meal, then I wait about 45min. to an hour before having a glass of water. I have found the GP diet is not all "one size fits all" either; it's a process of trial and error to find what you can tolerate. I found keeping a food diary really helped me to manage my symptoms and to learn which foods were bad for me.


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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
1/1/12 4:58 P

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I hope you can find some friends and more information in our team. Keep working at it - it does get better!

~ Sheri ~

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


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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SIERRA551 Posts: 16
1/1/12 2:59 P

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Thank you. You gave me lots of great information

1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
12/31/11 5:57 P

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First thing I can say is the gastroparesis diet is low fat and low fiber. The problem with that is every person's body accepts different foods in different amounts before it rebels. There are a few threads in our team that will help explain the diet and how to figure out what works for you. It will take awhile to figure it out, but it will be worth it. Also a 'meal' doesn't necessarily mean a full, balanced meal. It also includes snacks like granola bars. Stick to a somewhat bland diet and if you find it hard to get in calories from solid foods, try liquid nutrition like Ensure to supplement calories.

GP can be very scary. Many people who join our team - including me - all are scared to eat when they are first diagnosed, but the fear does subside once you learn and start figuring out what your body will accept. Unfortunately, even though there are a few cases of spontaneous cures, it doesn't happen often and it usually depends on what caused the GP in the first place. The causes are very diverse and many are irreversible. There are no cures the doctors can give, but there are a few treatments than can help. I was recently put on domperidone, there is a gastric pacemaker, an intestinal pacemaker, several other medications, and TPN or enteral feeding (alternate forms of receiving nutrition without eating). G-PACT has gotten the FDA to commit to putting any new GP treatment medications into fast track approvals, though those could still be a decade or two off. Still, many people can eat the GP diet and manage with that. I believe the best way to approach this condition is to pay attention to your body and work with your doctors to figure out how to be healthy within your limits.

Just remember - you are not alone. Recent estimates show 4% of Americans have some form of digestive tract paralysis - including gastroparesis. That means 1 in 25 people are going though something similar to you. Hang in there - it will get better as long as you keep trying.

~ Sheri ~

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


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SIERRA551 Posts: 16
12/31/11 3:43 P

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Thank you. I am trying to learn as much as possible. I was hospitalized 18 times before being diagnosed with Gastropoesis. I was placed on Reglan 4 times a day. Had side effects of tremors. The GI Dr. Stopped the medication yesterday. He said eat 6 small meals a day.
How much is that? 1/2 cup or 1/3 cup veg. Is Meat 3 oz. and how often. I am scared to eat.
In Nov. I had a bleed ulcer. Received two units of blood. Does Gastroparisis go a way?
Thank you for listening.

1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
12/30/11 9:21 P

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I'm happy you found us. There is a lot posted on our team and you can also look online to find more information. Feel free to ask questions and we can do our best to help you find answers. Everyone's gastroparesis is a little different, but that just means by sharing our stories we can help each other work through the difficulties.

We all understand the fear that comes with this condition. The more you learn, and the more you realize you are not alone, the better chance you have of learning to accept and make the most of living with gastroparesis.

~ Sheri ~

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


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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SIERRA551 Posts: 16
12/30/11 5:43 P

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Hi,
I am new to this site. I am so glad I found it. I was hospitalized 18 times in a little over a year before they diagnosed me with severe Gastroparisis. I am looking forward to reading all these great comments and learn from this site. Let me know if you have any ideas to get me started. I am scared and could use the help. Thank you

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