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Managing Gp

I have GP for 24 years, which means I was born with it. I have only known GP and have learned how to adjust to "normal" life.  I have been through 8 GI doctors and just about every know medicine said to help with GP. I can tell you this is a manageable disease. You have to learn how to eat, and what to eat. I can also tell you that for me my GP has gotten progressively worse as I aged. It starts with your stomach, then lower GI, then colon. Luckily it seems that modern med keeps up with my symptoms. My concoction is a very good diet, exercise, 50mg elavil, 24mg amitiza, and lots of water. But this is my story...

My mother always knew from a fetus that I had a hard time gaining weight. She was put on the icecream diet when she was 6 months preg with me. I had always been skinny and never was hungry, and always had nausea. When I was 14 I only weighed 83lbs and my digestive system had just about shut down. My doctors took me out of school, and I was put on the liquid diet. After 7 doctors I found the one that knew what was wrong with me. Apparently  your body will start to shut itself down. First gallbladder, liver...I then went through all the tests and was diagonsed with a severe case of GP at 16. I then started the round of different meds. Elavil handles the pain, and nausea. I was then sent to see a nutritionist when I was taught to eat. Thank goodness for that. When you are told no fatty foods, no fiber, no leafy veggies...there is not much left. After about 3 years I started having severe constipation and tried everything for it. I was on Zelnorm, Milalax, laxatives...nothing worked. The food would just sit in my lower GI tract and my stomach would swell up like I was pregnant. Then about a year ago I was introduced to Amitiza. It works miracles. Some say you have side effects, but I have those side effects with GP so no biggy. But after learning how to eat I went from 83lbs to 115lbs. My body also has developed a weird way of telling me its time to eat. I turn red all over, but once I eat it goes away. My GP is no curable, so I look at the bright side. I will never be fat, and will not have all the increased risks of heart disease, stroke, etc from being overweight. When people ask me what I have I tell them its like having a natural gastric bypass except I got it for free. On the downside, I have talked to to several people that are older that have had GP for 50+ years and have a feeding tube in their stomach, which seems a common progression for those who cannot manage GP. Any questions feel free to ask!

sshepherd sshepherd 22-25, F 13 Responses Mar 20, 2010

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I am 36 yr old female and have had problems all my life with GP. A colon and intestinal resection was done at the age of 16. I have had soooo many hospitalizations due to this illness. Not only is my stomach a mess but the entire GI tract. I have been eating a vegan diet with the exception of eggs, and have been managing much better with symptom control. I too am on Elavil and just got the Amitiza. Wow, what a huge difference that Amitiza has made along with following a veg. and fruit based diet. Thank you for sharing your story. We GP patients need the awareness spread so that one day maybe they will find a cure! God Bless!

It is so nice to read about someone like me! I am 20 and was also born with GP. I actually have known I have it for about a month. My parents first noiced something was wrong when I started eating soild foods as a baby. My Dr. told them I was just picky. I am on my 3rd GI Dr. Who found out I had it. My GP caused my gallbladder to go bad and I've been without that for a year now. I am very underweight and a lot smaller then I should be, obviously I'm not going to grow anymore. I'm not a chronic case or anything but I'm having a hard time know what to eat, I like to chew solid foods. Any tips for a 'newbie'?

ummm I also have GP and have most likely had it since birth. I'm 40. Mine hhas always presented as constipation and nausea. I was 9 days old and had to be given an enema before I ever had a bowel movement. Growing up I thought that puking was normal, I was always especially sick (often told I had the flu) at Thanksgiving and Christmas. Now we are all pretty sure it was due to the incraese in rich foods etc. My mom carried vomit bags with her when we would go out to eat. Unfortunately my GP wasn't diagnosed until I was 38 and was at the point of hospitilization nearly monthly. In for 10-18 days, out for 25-45 days, in again. I have been told I was depressed, anxiety ridden and nervous, making it up, even that I was deliberately hurting myself for attention by docs. My stomach has has to be cauterized, sewn and probed because of bleeding from increased acids and vomitting.
Here's the thing, I'M NOT SKINNY, I'm not FAT either butI'm 5'3" and weigh about 145-150 lbs. So while I did enjoy reading of your struggle and empathised with it I found the last bit a little rude. You may not know this but GP is characterised by EITHER weight loss or gain. I still can barely eat yet do not lose lbs. Also you might want to do some in depth research on the drugs you are taking. The biggest issue in treating GP with drugs is the fact that MOST drugs known to work on symptoms as well as gastric emptying have adverse cardiovascular effects. In fact several of the most theraputic drugs were banned by the FDA (some are available by special circumstance through an FDA panel) in the late 70's through the 80's due to extreme cardiovascular problems. If you can't eat and puke up all yur nutrion a 10% likely cardiovascular failure rate seems okay because you can't live at all w/o food. I'm not dissing your strategy or what you have found to work for you. It's a tough thing to have severe GP. I just don't want you to blindly adhere to the idea that they wouldn't give you the meds if they weren't safe. In medicine it is often a lesser of two evils thing, do the benefits outweigh the risks? The drugs that were banned here are still available in other countries, but some Americans (quite a few really) must have had very negative effects for them to have been used and then later banned. In my research I have found that MOST of the drugs they have tried me on HAVE an increased risk cardiovascularly, frequently it is suggested that cardiovascular health be considered before using the meds. You are 24, thin and probably at low risk but being 24 means you will be using these drugs longer and then the risk goes up.
At any rate skip WEB-MD and the dumbed down stuff, look up the Mayo clinics GP guide that clinicians use. They list every known treatment as well as ones that experimental. They list ALL the side effects (not too fun to read if you didn't go to med school, but people like us have been through the medical ringer and know more than the average bear, I muddled through) for the drugs used to treat the condition as well as those used to treat symptoms, i.e. anti-emetics. I have found I know WAY more than my Primary care doc but less than my Gastroenterologists.

Just be aware. And drop the I will never be fat thing.

You really should know if there are risks cardiovascularly.

Thanks,
Michele

Hello my name is Steph and I to have GP. I was born with a immature digestive system and doctor told my mom that I was severely colic and was put on goats milk and had to drink only out of glass bottels and as time went on I grew out of being colic, but since I can remember my stomach is always nauseated. But not as never severe as now. Approx. 4 years ago I got up one morning like any other day and I ran to the restroom vomiting. Since that day I haven't had a day where I am not nauseated. The mornings are my worse!! If I wake up severely nauseated I'm gonna be in bed all day. I work for IHSS, I take care of my mom who also very sick but not GP. I have a 13 year old daughter and it's so sad that her mom is always sick. I can at least hold a job where I am able to take as many breaks as I want I guess. My illness also makes my mental health really bad. I am DX with depression, ptsd, biporlar, and major panic and anxiety. Right before I got sick, I left my daughters father who use to beat me up and most of the mental health is related to that as well. But the depression and panic/anxiety got really really bad! I'm in therapy and also see a shrink. Before I got sick I was going to school to help people get off drugs and help familys' get reunited. I would of graduated last year . So after I read what you posted it really touched me and made feel like if a young women who has GP her whole life and your only 24, I'm 33. thank you for you story it gives me strength! God Bless you

I have GP and have had it all my life too (I'm 25). As a child i always complained of stomach pain and nausea.. Sometimes I would throw up on the school bus but then I would get ok.. always full after a few bites...It wasn't until I turned 14 my symptoms progressed. I wasn't so lucky in getting a diagnosis early on; in fact on many occasions I was told it was all in my head. My symptoms were abdominal pain nausea and uncontrollable vomiting lasting anywhere from 5-7 days..my weight ranged from 72 at one point and 90 another. This was going on every other month or so..I had, had just about every stomach test known done with no results.. Then I found a new doc willing to get to the bottom of things. I had a gastric emptying study done.. Finally in 2009 I was diagnosed. Annnd in 2010 I had a gastric stimulator put in and I'm feeling much better my symptoms are more controllable, I can eat more solids now..although I like to play it safe. And I weigh about 115-118 now :-)

My oldest daughter was diagnosed with GP her sophmore year after an excruciating year of pain, nausea, missing losts of school, depression, and every test known to man. After the diagnosis life got better. She is on many medications because the the GP caused the depression. She also has functional dyspepsia, acid reflux induced migraines, and heightened visceral sensitivity. It has been a rocky road but we she has done a wonderful job of learning to manage by eating several small meal throughout the day and never gorging, drinking lots of fluids, and never missing her meds. Just last week her younger sister was diagnosed with GP too. She has a much less severe form and so far is med free with the exception of citricel. It was much easier to diagnose since this wasn't our first rodeo. Both our girls are able to lead mostly "normal" lives - whatever that means. They laugh that they can use GP as an excuse to not eat the foods they don't like. Hang in there!

You have a marvelous attitude. Good Luck to you and May God Bless and Keep You

Thanks for the positive support! We have had him on medication now for about a week. Finally in the last two days it seems to be working! No getting sick for 2 days!! Lets hope it keeps up!

GEllen.

My mother was very frustrated for a long time. She would make dinner and either I had to much nausea to eat or I would eat a little and be stuffed, and she is a traditonal southern cook. She eventually learned how to cook for me. I do remember getting to drink a lot of milkshakes. But you have to be careful because high fat content in icecream can slow down your digestion. I would try frozen yogurt as a substitute. It is hard to figure out when you need to eat especially if you are not the one that has it. For example I know that every 3-4 hours my stomach digest about 25% of a normal meal so every three to four hours I eat 25% of a full meal. I always stay full but I do not overfill my stomach so I do not throw it up. My doctor was kind enough to let me have a gastric emptying scan and see how long it took. This is the same scan you should have had for your diagonsis of GP. The one where you eat the oatmeal and lay on the table. When I was young I was very thin, but my mother was determined to figure it out. After some trials she seemed to get it right. I lasted until about 14 without any meds, but by then by body could not handle it any more. So now I have a great dieitian, and the right combination of meds. As far as support goes, my mother was frustrated but always supportive. Everyone in my family has something unusal, so we kind of all supported each other. My GP is idiopathic, but since my nephew was born it has been linked to something wrong with my father. Something is wrong with our 11th chrmosome. My nephew was born with Beckwith Weidman Syndrome, and VCU did a genetic study on our family and found out that our 11th chromosome has a defect. Everyone has the same defect but it effected them in different ways. I guess mine was a lack of growth of nerve cells in my digestive system, My mother always told me that I would never be fat, did not have to worry with all the risks associated with obesity, and could wear cute clothes. When I tell people I have GP and it causes me to not gain weight that want it lol. I tell them it is like having a nautral gastric bypass except with pain. I think you have to be optimisitc, you have a disease that you will have forever, learn to manage it, it could always be worse.

I just found out my 6 year old son has Gastroparesis. He just started Erithromycin 2 days ago. He has still gotten sick both days. We are in the process of trying to figure out what to feed him as well. I think we need to stick to mostly liquids-the Dr. said he was only digesting .5 of solids. They said to try milkshakes with protein powder mixed in. I am sure he will be loving that!! My question to SShepherd is: Was there anything your parents did or wish they would have done to help you and support you? I am trying so hard to just be calm and keep everything as normal as possible for him. I struggle with this because I WANT to be with him almost every second now to be sure he is ok. Any advice would be so welcomed...

I believe a good attitude is the best way to deal with anything. I admire you for your positive outlook!

Many thanks for your answer, it is very helpful.

I'm still trying to find what I can eat without getting sick later on. I had GERD and stomach problems for many years and it got very bad about two years ago when I tried slowly to swith to a vegan diet and eat more nuts, raw veggies, salads , legumes and whole grains. After many doctors and tests the diagnosis was Gp, my stomach empties only 29%. The recommended diet by the doctor doesn't look healthy to me: white bread, white rice, white potato , no nuts, no raw veggies, however it helps.

I'm looking for a dietician or nutritionist with experience with Gp problems and advice from people who have Gp.

GP is really about figuring out how long it takes for your food to digest and eating low fat healthy meals. For Breakfast I have a piece of whole grain toast, 1/4 cup scrambled egg whites with 2% cheese, and 1/2 cup fruit. The I will eat a snack which is a handful of nuts and low fat greek yogurt or a piece of string cheese and low fat greek yogurt. The lunch I will usually have 1/2 piece grilled chicken and 1/2 cup fruit. The dinner either grilled fish or chicken, 1/2 cup veggies, and 1/4 cup whole grain brown rice. The more fat your food has in it the longer it will take to digest. For example eat a chocolate doughnut or cake and you might as well wait until tomorrow to eat. Also I drink water with every meal, but some people have told me the raw Kombucha tea helps especially if you have the lower GI problems. I was 83lbs at 16 and since being on a diet that works I am at 110lbs at 24.

Do you have much nausea or pain? We can't. Seem to put a finger on what is making my daughter feel sick. Sometimes food she has been able to eat makes her sick and it is so frustrating for her

That's how I was threw out my whole life. I was always in pain and sick, but it wasn't always the same things. I have learned the more simple the food the better. I go with no preservatives and that has helped a lot!

I would like to know what you eat, what diet are you on. Thanks