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2/7/13 6:20 A

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Thanks Sheri for everything
please let us know what happens with your insurance, prayers that all will go well for you emoticon

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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
2/7/13 2:18 A

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I figured they probably were doing an endoscopy with the botox, but sometimes there's just no way to know for sure what a doctor is doing. The hiatal hernia makes sense, especially with the confusion of hunger/full signals. Do you know how bad it is? If it's small it's often not 'that bad' but if it's significant then it just complicates the problems that much more. In some cases, a hiatal hernia must be surgically corrected, though it's rare to have it that bad.

Baby food is often a real help, but be willing to try a few brands and flavors. Some may cause problems but others might be okay. That's where the trial and error comes in.

Please, feel free to share any info you think is helpful with anyone. We best help others and ourselves by speaking out and spreading awareness. If people don't know and don't understand they can't help. Considering statistics say 1 in 25 people in the US have some degree of GP, it's not uncommon to know someone else who has it. Some even have GP without knowing it; they just eat differently. Since so many people have it but so many more have never heard about it and/or misunderstand it, by talking about what GP is and especially how it affects us we increase the chance of getting help from others. If no one had ever raised awareness about cancer would we pay so much attention to it and be so kind to those who have it? Awareness efforts are not in vain, even if it takes decades for it to do any obvious good.

Definitely think about what I've said and try some new foods. If you have more questions or think of anything that sticks out about your symptoms that you're curious to know more about, please let me know. I'm not always right, but pointing someone in a direction sometimes helps.

~ 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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2/6/13 6:10 A

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yes, you should get your dr license! seriuosly emoticon

i will keep this and read it many times and take notes thank you!

in answer to a few, i sleep on a wedge and dont eat or drink 4 hours prior to bed.
I have an upper endoscopy every 12 weeks when i get the botox into the pylorus. (now insurance denied, in appeal as we speak).
I do have the hital hernia.
I never had any stomach or by pass surgeries where damage could have occured.

thanks or the ppi update and insurance as mine always has to be preauthorized as i exhausted all the other meds even though they have the generic for this drug protonix.i worry they may doo the same on zofran theni am really in trouble

i told my mom yesterday that i am going to have to give her my greek yogurt i am no longer able to tolerate it and had to change i had to eat yoplait light.interstesting you say that.

i like frosted flakes shall give them a whirl yum!
i do cream of wheat also but only able to eat a little less then half a serving this moring

i bought a baby food to try yesterday, gerber graduates and it was a squeeze pouch that was apples, pears and peaches and like an applesauce consistancy. it was ok not horrible, a taste needed to be aquired but i could do that ok, and i ate the whole pouch 4.23 ounces,( 1 serving) and it was really telling me better not finish it but i did, next time only 1/2 and then the other half later but i so wanted fruit

i have a blueberry banana one i havent tried yet.

again thx and if you dont mind may i share this with my best friend who also has GP?

When she was diagosed i was like what the heck is GP? she explained and then went on to tell me about the botox and i was like haha botox in your stomach and we chuckled then bam 4 months later i was diagnosed again we laugh because i swear we have sympathy for each other and she usually gets what i do only a few months before, you would swear we were family

Have a good day and continue on good health and let us know when your insurace kicks back in this is too scary!
thanks or alll this wonderful advice and sharing with us all

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2/5/13 9:18 P

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Wow...
Warning! I just posted a LOT of info. Take it a little at a time. Trying to understand everything at once might hurt your brain. haha

Yes, that took a few hours for me to type out. Don't be afraid to take a long time to read it and consider it.

~ 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!
teams.sparkpeople.com/doalittlebette
r

My sparkfriends are my greatest support and I'm grateful for it.
1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
2/5/13 9:17 P

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I have an odd aptitude for this stuff. Plus, because I have 11 medical conditions, most of which are misunderstood, unique, or rare, I have to know something about every condition so I can deal with the doctors better. Also, my first 2 years of college was towards a double major in human bio and bio with a minor in human development looking at going into genetic research. It's actually somewhat ironic that I now have diagnoses that I need that information to deal with. I also get to keep the doctors on their toes by calling them out when they're playing games.

Bacterial overgrowth isn't a typical cause of GP (a bacterial infection with 'bad' bacteria is, but not so much an overgrowth of 'good' bacteria) and once you've had it, it can come back again. And with the dramatic overuse of probiotics in the general public, bacterial overgrowth is going to be a bigger and bigger problem. Actually, studies have recently linked our natural ratio of bacteria (there are just a couple - maybe 3? - major types of good gut bacteria) to our body size. The natural ratio our gut's bacteria affects how we absorb nutrients as well as what nutrients are created by the bacteria for our body to use. If there's an overgrowth, there are more bacteria 'pooping' and releasing gases, which is what can cause severe bloating.

Considering you're linking the hives to adrenaline/nerves, you should probably get that looked into more. It is possible to have hormone levels be off so far as to cause severe damage to the body, but it is hard to deal with. In the meantime, you might want to try yoga, tai chi, or meditation to get more control over your body. Learning self-regulation and relaxation techniques have serious benefits, and few or no drawbacks. For instance, I have an overactive nervous system (fibromyalgia from Ehlers Danlos) so if someone tries to draw blood from me my body overreacts to the pain and can shut down my veins. I've found that by hyperventilating myself then holding my breath (do NOT try this unless you really know what you're doing - doctors get pissed until I explain I know exactly what I'm doing) it resets my nervous system. If I don't do it, then things like blood draws or even standing quickly (I also have orthostatic intolerance) causes a loss of blood to my brain and I black out and stop breathing anyways. Perhaps if you can learn some self-regulation techniques you can control the hives reactions somewhat.

The sloshing in your stomach is supposed to be on the left side - that's where your stomach is. Your liver is on the right and your stomach on the left. Another positive of very gentle exercise is it helps your digestive system by increasing blood flow and nervous system signals throughout the body. You may consider doing gentle movements after eating and not eat for at least 2 hours, preferably more, before going to bed. Laying down right after eating makes GERD and usually GP worse. (Laying down only helps my GP because of the Ehlers Danlos.) Also, think about this: when you're on a roller coaster and you feel your stomach drop out, it really does drop about a centimeter. Add in a stomach full of food and the connective tissue holding the stomach in place will make that movement even worse. So if you go to sleep with a full stomach, laying on your side letting your stomach move in a direction it's not used to, it will make you sick.

When was the last time you had an upper endoscopy? Any chance of a hiatal hernia? Did you ever have stomach surgery? What have they said about your esophageal sphincter? A damaged or stretched out esophageal sphincter will cause severe GERD as it leaves the opening into the esophagus wide open instead of closing it off. Stomach surgery such as a gastric bypass can cause GP and other complications. A hiatal hernia is where the stomach partially pushes up through the esophageal sphincter and creates a 'pouch'. All of these things would need to be checked out with a doctor.

The pain on your right side could be where your gall bladder was. If you're continuing to have problems there, you should probably running that past your doctor quickly. Make sure you know what brings on the pain and if anything makes it better. It could also be a liver issue or a kidney issue, but kidney pains radiate through the back not the front and the liver usually doesn't have a standard feeling of pain and often would include jaundice. If it's a little bit below your ribs it could be a twist in the intestines or something more serious, but that's rare and wouldn't quickly become so severe that you'd be rushed to the ER immediately.

I had the bravo for GERD testing also. Though I wouldn't go by the doctor's face, as the numbers are usually run off the meter by an outside source, not by the doctor. With mine, the pH in my esophagus hit 1.6 at one point, which is lower than the average 2-2.5 pH in the stomach. Also, I was put in the ER and hospitalized after a day and a half because the bravo ulcerated (tore a hole in) my esophagus and they had to go back in to remove it before it caused more damage. Protonix (pantoprazole) has become the standard treatment for bad GERD, especially when combined with GP. Unfortunately, it is very expensive and most insurance companies are now refusing coverage for any PPI - so be prepared that this could happen. I believe the FDA has now fully approved the use of a magnetized ring to be surgically placed around the esophageal sphincter to stop GERD, but it is a dangerous procedure and you have to change a lot of your life because of it. It's also important for you to figure out what foods are affecting your GERD and avoiding those foods. No reason to make it worse!

Quick anatomy lesson: after you eat, the food goes into your stomach, acids are dumped in, the stomach churns up the food to break it down, the pyloric sphincter (where the stomach meets the duodenum) opens about the size of a pinhead to allow the liquid through, alkaline liquids are dumped into the duodenum to dramatically raise the pH, then the liquid flows into the jejunum, which is the first part of the small intestine where most of the nutrients are absorbed. After the thin liquid is emptied out of the stomach, peristaltic waves occur where the muscles in the stomach squeeze whatever is left in the stomach (indigestible material) is moved to the bottom of the stomach. By this time, most of the digestible material has passed through the jejunum and the pylorus opens wide to let the leftovers push through with basically a note saying 'don't try to absorb this!' It's this system that allows a child to swallow a penny or a marble and have it pass through without severe damage or poisoning. So the churning you feel could be either a) your stomach is actually being overzealous to break down what you've eaten or b) you're feeling the peristaltic waves and your body is confusing it for being hungry. Unfortunately, if your stomach is actually still full and you eat on top of that, you're not filling your stomach, just filling your esophagus. This stretches out your esophageal sphincter even further, worsens your GERD, and does nothing to stop your hunger. Believe me, I know no one wants to ignore hunger feelings, but this is the time when you must. Instead of eating, try drinking a LITTLE water or doing some very mild exercise (light walking or tai chi). Honestly, the more effort you put into ignoring the hunger pains at these times (not all the time!) the easier it will become because you'll retrain your body about what is hunger and what is pain.

I don't know about everyone, but Greek yogurt makes my GERD worse. It's thicker and sticks in my esophagus longer and when it hits my stomach it tends to make it upset unless I'm eating it after eating something else. Also, I'd suggest doing more liquids and especially more water and less pretzels if possible. Cheerios give you more nutritional value than pretzels and sipping water with cheerios will help them break down better than pretzels. Also, you might want to try some other dry cereals, as some types of cheerios have higher fiber. Frosted Flakes and Rice Chex are two to try. As sucky as it is to consider, you might even consider cutting down on all foods for a day or two and just drinking water. If you have a backup of food in your intestines and/or stomach, it often is helpful to allow that to pass before trying again.

The 6 mini meals are the standard response. Often this turns into grazing, so the stomach is never really allowed to rest until bedtime. Don't worry about hitting this 6 mini meals, just eat in small bursts. If it takes you 2 hours to eat what some people would scarf down in 15 minutes, it's not a big deal. Getting down any food is the goal. Remember, we're completely relearning how to eat when we have GP. "Mini meal" isn't a defined goal, just that you eat a very small portion then take a short break. There are many times were I've eaten a very small amount 10x/day. Your stomach is maybe the size of your fist, but stretches to accommodate. We don't want to stretch it. So if your 'mini meal' is half the size of your fist or less that's just fine. It means being extra careful about what you eat because filling up with something that's not helpful can take away from what is.

Try not to worry about what others say. They can't grasp what it is to have GP. It is severely painful, horrible, and in a few cases deadly. Anyone who makes light of such a horrible condition doesn't deserve a response. For quite a while I was losing a pound a day and was in such severe pain that I would have to choke down tears more often than I could choke down water. When I went underweight I was put on TPN to try to reverse the weight loss but I still fight every day to do anything. Considering all my conditions, I have almost zero chance of ever being 'better' or living a 'normal' life again. In the end, it matters more what YOU are willing do endure and who is supporting you than who is making prejudicial judgements based on false information. And don't worry that I'm sharing info with you and you haven't yet found much to teach me. We all learn from each other and taking what you learn and sharing it with others - including those who have never heard of GP before - is very important. Raising awareness now could save others from suffering or dying in the future.

~ 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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My sparkfriends are my greatest support and I'm grateful for it.
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2/5/13 6:23 A

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wow you are wikipedia haha.

Actually they ran those high powered drugs for the overgrowth and it did nothing. they pretty much feel mine was viral. i was diagonsed in march 2010 for gp but had symptoms for years even before my gall bladder was removed in 2006.

I handle milk, cottage cheese and ice cream well ,when i have the botox treatments, even though it is a reflux trigger, the hives come from high adrenaline like if i get nervous or excited and when i have caffiene or when i had to take ritalyn for narcolepsy, any thing that makes my adrenaline go up causes hives.

i know the sloshing, we add water to the dog food and it acts like a sponge we do it to reduce bloating and torsions in our dogs. very good points to make.,
the sloshing is the left side however. i pretty much have to lay on my back for the first part of the night, if things havent moved through by then, if i lay on either side especially my right i will have naseua within a mintue or two and after a few hours i am fine laying on either side.

if i drink my swiss miss etc i can actually feel my stomach on the left weird right? I also get a lot of pain under the first part of my right rib cage as does my other friend with GP about an hour after we eat and sometimes cramping there as well. any ideas ?

I fell selfish like i have my own presonal tutor and i feel i have nothing new to help you with i am so sorry emoticon

I also have gerd like crazy, i was tested with the implant of the bravo device, my drs face told the story, i was way below the line showing a huge amounnt of reflux and after elimiating most of the the drugs we found protonix 2 times a day was best but even that cannot hold it at bay all day.we decided diet and exercise and weight loss may help as i dont drink or smoke.
i was 287 pounds before everything hit in 06, vowed to get healthy and went to 127 in 2010 working out exercise etc, then the flare ups cause weight gain and bloating etc, and the strangest part is the best way i can describe MY flare ups is it churns and feels like constant hunger pains so i ate, it helped for a temporay fix within a half hour you only have made things worse. my friend with GP has this same issue. as you say no one is exact and everyone has different things that work

My problem now is the thought of eating just gags me and i have complete loss of appetite. yesterday i had dry cherrios 1/2 cup, 1 chobani greek yougurt, took 35 minutes and lots of mind control telling me to get it down to finish it and i had a medium size bag of pretzels . been about this amount for 3 days now gained 3 pounds

I eat the dry cherrios etc because it is something i can pick at, i pick all day i dont actually eat a meal anymore, since my treatments have stopped my dr said 6 mini meals but i actually pick all day if i eat a mini meal i am sick and then i dont eat until the next day.

so glad to hear all this from others, only sad that there are so many of us that have to go through this. when you lose weight and workout out people say it is because she has that stomach condition ,wish i had it for a while they comment, but i dont let it bother me they dont understand and dont mean anything cruel by it but i told them be careful what you wish for.

I am very fortunate and lucky as there are so many people so much worse with GP than myself it breaks my heart to see what they endure bless thier hearts.I feel very blessed and i thank god everyday for my health

my dr sent my ins appeal in with thiers so i hope to hear soon if they will resume the botox treatments that worked so well for me, if not i must find a new way of life but with them i was able to eat small fresh salads and few raw veggies the first few weeks after treatments but i still miss broccoli and things i cannot eat at all regardless,
I tried jucies and smoothies but they dont seem to do well about 1/4 of a cup is all i can handle.
you sound like you have found a way to manage yours well, hats off for the time and research and the knowledge you share with all of us you are truly a blessing and inspiration emoticon

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2/4/13 8:33 P

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Have you been tested for a bacterial overgrowth? Saying you break out in hives from sugar concerns me, and it is possible to have some symptoms of GP due to a bacterial overgrowth in the intestines. If you haven't been tested, you may want to ask about it. What happens is you drink a special bubbly liquid (trying hard to not burp) and then every 15 minutes you blow into a bag. They test the air in the bags to see if there are excess gasses coming from bacteria in your intestines/gut. The bacteria help break down food and release vitamins that we use, but if there's an overgrowth there's problems. Plus, if you're reacting to the lactose (aka milk sugar) in milk due to a problem with the bacteria in your gut that would explain why you can eat dry cereal without a problem but with milk (I assume) you're getting gas and bloating. Note: do NOT attempt to change your intestinal bacteria with yogurts or probiotics until you've spoken to a doctor. Every person's bacterial makeup is different and using these products can actually cause severe problems (ex: if I take probiotics I get a massive yeast infection that causes skin on my bottom side to peel of in quarter sized hunks!). Your GI doctor should be able to look into any bacterial problems you might or might not have.

I can't help but smile a bit at you saying "thought it was just me", as when it comes to a lot of this stuff we all tend to think it's just us because others around us don't deal with this stuff. But yes, a lot of people with GP have similar experiences with having to eat and drink differently. Part of figuring out the diet is figuring out how your body likes things to be done. As for the water sloshing, if you're eating solids with liquids you won't hear/feel the sloshing as much as if it is only liquids. Thicker liquids slosh less whereas thin liquids will slosh more. To see what I mean, put water in a cup and swirl it around then put a hunk of bread in it and swirl it again. It sloshes less when there's solids in there. So part of the sloshing is more perception. Also, your stomach is on your left side between your hip and your ribcage, so that's the area to pay attention to for aches, pains, and fullness. If what you're feeling is just above your belly button heading from left to right that's the area of the duodenum, then below the belly button is miles of intestines. So where you're getting sloshing, pain, etc is also important to note for your doctors.

I've never tried those pregnancy pops, but I've heard of them. My nausea is from far more than just GP so it's doubtful they'll work for me. I'm possibly allergic to Zofran (and/or a muscle relaxant I was taking at the same time) so I'm on Compazine. It doesn't work well, but it works enough on the really bad days when I take it ahead of time. Remember: with GP everything is slowed; many meds aren't absorbed and put to use until after they get into the small intestine, which often times takes 1-3 hours in a normal person but in us can take much longer. So if you do end up taking meds for things like nausea, make sure to talk to your doctor about how to maximize the effect by taking them on a consistent basis and/or taking them just before you expect to need them. As for the pops, others are helped by them and you're more than welcome to give them a try and tell us your thoughts afterwards.

I'm happy to help when I can. I've spent a lot of time studying the body even before my diagnoses, and for the first year to year and a half after I was diagnosed in Sep 2010 with GP I figure I did about 300 hours of research. Obviously not everything is the same for everyone, but getting people onto a path is often what is most needed. With as many 'unique' diagnoses I have, I know that just being able to figure out the basics of what these conditions mean to my life and how I can at mininum not make them worse is better than having no clue and allowing it to disrupt my life that much more.

~ 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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2/4/13 6:14 A

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hello, thanks for the info on sugar. my friend had told me this but i was not able to have time to look further into it. It has been wicked busy here. I will try to watch more closely with that but i dont want to eat to much sugar or i break out in hives like i do with caffeine.
sorry to here about your esophagus allergies, seems when it rains it pours but somehow we always get through it with our friend and family and support.

I try to drink water and i drink it at room temperature as i do most everything i cannot handle cold drinks well, thought it was just me. i have to sip water as it sloshes if i drink a cup of it to quickly and it seems to be the only drink that does this to me. strange right ?

one thing i find works fairly well and not sure if it will help others is if i eat dry foods i do not cramp and have as much nausea. i eat dry cheerios and it does not bother me. i pour about 1 serving in a bowl, i eat them dry like a snack over the course of about an hour or so. if i cant finish all them i seal the bowl and later eat the rest. soda crackers do real well also .Plain animal crackers work too. just doest bother me and dont feel the gas and bloating from them although not a lot of nutrition some days just eating calories helps i have heard.

also i am going to look into a nausea control food, on one of the gastropresis blogs on fb, they mentioned preggie pops, i researched and they appear to be like a candy or something pregnant women take and i have heard they help, would be more natural then all the zofran, has anyone tried these yet?
so glad i have found you guys this is like having my own wikipedia only from people who experience it.

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2/1/13 8:41 P

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Thanks for giving me more info. When someone joins our team we never know how much they already know or what they've already tried.

I understand why you're concerned about the domperidone. You definitely don't want to add any additional risk when you've already had cancer. Also, good to know that you do well with gummies and aren't dealing with the added issue of diabetes. Since you don't have diabetes, I'd suggest worrying less about the natural sugars in foods and be more concerned with the fake sugars. The sugar replacements in some foods can actually be carcinogens, and since we have to cut back on fat and fiber (the 2 hardest to digest macronutrients) also removing sugars diminishes our diets further. This doesn't mean you should eat nothing but sugar, but having sugar free foods when it's not necessary isn't always the best option - especially since when they remove something they put something else in to replace flavors.

It looks like you have several foods you do handle, and that's great. Slowly add to that list. Make sure to only try 1 new food every 2-3 days, as it takes that long for food to work through our systems ('normal' systems are 1-2 days, but ours are slower). It's possible to have your intestines react to a food 2 days after eating it but think it was something we just ate, which makes it confusing and difficult to really know what we can tolerate and what we can't.

What are they doing to control your GERD? The more severe the GP, usually the more severe the GERD (if it doesn't go down, it goes up). If you can control the GERD it will help with your esophageal problems. Considering they've had to dilate your esophagus several times, have they looked into the damage that's happening? I have Eosinophilic Esophagitis, which is an allergic response in the esophagus that prevents it from working properly. I've found that it acts up when my GERD is uncontrolled and/or when my GP gets worse and food backs up in my esophagus. They treat it with swallowing the spray from a steroid inhaler to break up the white blood cells (eosinophils) that are lining the esophagus. Not saying you have it, but it's an example of additional damage that GP can cause.

Also, considering the edema, be sure you're drinking enough water. It sounds opposite, but when the body doesn't get enough water to flush out sodium in the kidneys then fluid builds up in the body. If that happens for too long it can cause damage and scarring in the kidneys. A good tip is to not drink cold water; stick to lukewarm or warm water, as just like putting ice on an injury numbs the nerves and slows blood flow to the area, cold water can actually make GP worse. Drink water a half hour before eating a meal and/or an hour after eating. Don't drink when eating, as it will fill up your stomach and make it move slower; only sip if you need it to help you swallow. Avoid caffeine which dehydrates the body and skip high sugar and high acid drinks like soda (unless your doctor recommends it to increase calorie intake).

It's wonderful that you're able to get out there and exercise, and I hope you continue to enjoy it. Very mild activity after eating (like a light walk) may help you digest better and mild to moderate exercise on an empty or nearly empty stomach will help in many ways while not aggrivating your GERD.

I'm glad we're able to help. Many people who are diagnosed feel totally alone because it's a misunderstood and often ignored condition, even though 1 in 25 people in the US have it and there are about 20 million cases of just diabetic GP (the most common cause) in the world. Finding others who have it as well helps us not feel so alone and let us know there is hope. Our team has people with all different types and causes of GP, but we're supporting each other through the troubles and the successes as we figure out how to best live with this. Anything we can do to help, we're here and anything you can do to help others is appreciated.

~ 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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2/1/13 6:30 P

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bless your heart, i hope everything goes well and you continue to improve. Women are tough for sure and with friends and support it helps us to stay positive and look ahead

My gp is idopathic

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2/1/13 5:30 P

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Welcome to the team! I am also living with cancer in addition to the GP; in fact, mine was caused by radiation treatment I had for the cancer. I had radiation to the spine and some of that went through my stomach, damaging the nerves. I'm doing pretty well though managing my GP with diet and medication.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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2/1/13 7:15 A

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Thanks for all the great info sheri emoticon
domperidone is $125 here and ruled out for me with the past breast cancer and being
BRCA 1 and not enough about the drug for them to really know the safety for me

Thankfully i am not to the tubes and things just yet. Been a follower with G-pact for some time and on thier facebook, wonderful things there and awesome site and other great gp people there with lots of support
I actually do diet swiss miss daily with my miralax it is like a thanksgiving meal when i am through, but i do ok with it. emoticon
The dietician put me on gummie vites when i was in the hospital for a week, 3 years ago, i do great with those and actuallly fine with the gummie fiber and viactiv choclate chews with no problems and also on empty stomach as you do
I also had my gall bladder removed in 2006 so it is no longer to help either
I can do an occasional 1/4 of the idahoan instant potatoes that comes in the envelope they are pretty good,several flavors and a boiled peeled mashed yam from time to time love them with a little butter spray and light brown sugar. Cream of wheat if i dont eat a full serving is also wonderful!! breyers sugar free ice cream vanilla is good and sugar free pudding works. Jello sometimes and never gatorade, i gerd it back and popsicles too i have gerd and i get the strictures and then when they did my botox about every 3rd time i needed the dialtion of the esophagus

I am not diabetic mine is idiopathic, however i do have heavy edema in the legs and when the gp flares up and the insides dont move it comes on worse, i wear the compression garments to help
My sleep dr had my narcolepsy just about under control until the treatments stopped a few weeks ago for the botox, he has since had to change my meds as i have trouble sleeping with the naseua and upset tummy at night, i stop eating and drinking 4 hours prior to bed and sleep on a wedge.

your ensure clear is now on our shopping list shall give it a whirl what a great idea, thanks , emoticon

I really appreciate having others to talk to , i dont let it ruin my day and when i am not to run down i zumba 3 x a week and walk, it is so fun if you havent tried zumba and are able , it is well worth it physically and mentally, no one judges and we all have a blast and i have met so many wonderful people, i love staying fit, ipods on a walk with the latest pop hits whoo who! have a great weekend and thanks ever so much friend

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MOWGLI7's Photo MOWGLI7 SparkPoints: (0)
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2/1/13 6:54 A

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thank yo Nola 8-)

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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
1/31/13 11:09 P

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I understand your frustration, and empathize. BTDT. The bad part about having this be a relatively misunderstood condition with much of the research from just the past few years and many of the treatments being relatively new or still being developed, many of us who have it are left without many options.

I was put on domperidone for about 3 months. I know it has helped a lot of people, though only a few doctors in the US can prescribe it and even less compounding pharmacies can make it. It is available in almost the entire rest of the world, but the FDA is supposed to be moving forward on approving it... but no one knows how long it will take. I was taken off because I didn't respond to it (I have multiple causes and are very unique) and I was having some odd reactions. FYI: I paid just shy of $80 per month for the domperidone. Sure, it sucks having to pay it but it is worth it if it works - and it's a lot better than some medications that can cost hundreds or thousands per month. If you have the option for medications that are not covered by insurance, find out what the cost is before refusing it. It sounds really bad, but if you're not spending much on food because you can barely eat then that money can go towards a medication that might help.

If things get really bad, you can talk with your doctor about enteral nutrition or TPN. Those are the last options to give people nutrition when their systems completely fail. It is awful being on it (I was on TPN for awhile last year) but if everything else fails that's what's left. TPN and enteral feeding should be covered by most insurance companies, considering it is a life-saving measure. So, know that if your eating gets even worse there is something that will keep you alive... and drive you crazy at the same time.

Also, know that G-PACT is continuing to fight on our behalf, putting pharmaceutical companies to task and lobbying lawmakers to get involved. There have been a few attempts at new medications just in the last 2 years, though it is a very long process and new meds might not be available for awhile. Still, keep hope.

In the meantime, keep trying different foods. You said you have a hard time with ensure, but have you tried the new ensure clear? It is thinner with no fat, so it should digest easier. You can also try gatorade and similar liquids or low fat hot chocolate. If you don't have diabetes and can't get down anything for a day or two, you can suck on gummy candy to keep you going. Some of the simple sugars can be absorbed through the mouth to get some glucose into your system; there has been times where for a few days or a week that was the only calories I got. Unfortunately, if a person has diabetic gastroparesis that's not an option because it can throw off blood sugar levels. Don't forget pureed foods and easy to swallow foods, such as applesauce, broth, thin soups, jello, and mashed potatoes. For more ideas, take some time to walk around the grocery store and see what you can find to try. When you can't eat so many foods, it's hard to imagine what could be left that you can have. Also, don't forget to take a multivitamin. I take gummy vitamins and have never had a problem - I chew them well and take them on an empty stomach.

~ 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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GRNDMOM43's Photo GRNDMOM43 Posts: 47,152
1/31/13 7:31 P

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emoticon emoticon We are glad that you are here to make this journey together.

Nola

Kansas~ CST
Each step taken is a calorie left behind!

Don't quit! Tomorrow is another day to Sparkle.







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MOWGLI7's Photo MOWGLI7 SparkPoints: (0)
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1/31/13 4:04 P

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Hello , thank you for your email. You are so kind.
I will look again at the threads about the foods you mentioned.

the insurance company 4 times, and my Dr has filed and appeal and i will file mine once he hears back, this is considered experimental so it was covered in the past however with all the new health reforms insurance companies are dropping a lot of things. I cannot take any motility drugs and work on trying all the gp diets even liquid is hard to take in some days. The gastric pacemaker also is not covered and considerd experimental, i have everything on these i writing from insurance companies.
I will do a follow up with my gastro dr once we know more but it is sounding more like not much more can be done,
I will keep trying with insurance though 8-)

domperidne is a motility drug not approved in US by fda and can be compunded here, no insurance covers it because of this and after breast cancer our oncology dept has said it is 50/50 just not enough information yet but they know it has caused tumors in lab rats.

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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
1/31/13 3:30 P

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Welcome to the team and to SP! Yes, it can be very difficult finding foods that we can eat. I have a thread on our team about some ideas for foods to try. They won't all pertain to you, but it should help you with some ideas.

As for the botox, you should look into appealing the denial. It is a difficult process, but it's worth a try. Calling the customer service line for your insurance and asking them about the contract for your policy may help you figure out how to best fight it, as sometimes how a procedure is explained by the doctor will cause a denial. You may also consider talking with your GI doctor about other treatment options. If you can't get the botox, you'll need to try something else.

~ 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!
teams.sparkpeople.com/doalittlebette
r

My sparkfriends are my greatest support and I'm grateful for it.
MOWGLI7's Photo MOWGLI7 SparkPoints: (0)
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1/31/13 7:07 A

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Hello, my name is Kimm, i have gastroparesis and several other health issues. I am finding it very hard to eat healthy foods with GP, i do fine with plain saltines, plain animal crackers and your basic junk non fattty foods, eating vegtables or fruits and juices and boost and ensure are difficult for me. I try to maintain my health after being diagnosed with cancer, I was my heaviest at 287.8, then i worked out everyday with walking as my main workout. I went from 3x to a size 2 and weighed 127 but when the GP flares up and i cannot eat healthy foods i put weight back on and now back to 142 pounds . the botox was working great every 12 weeks for 3 years , however insurance companies have just recently denied myself and almost every one that is getting this treatment. i am now 2 weeks past treatment, Do any of you have ideas on things that may work, ? everyone is different on what there gp will tolerate i know

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