just diagnosed with GP a week ago

Hi everyone, I just joined inspire and am so happy i found this site! I was just diagnosed with gastroparesis a week ago. I have been dealing with severe stomach pain, bloating, fullness, nausea, heartburn, cramping, low blood sugar, constipation (basically the works) all my life. In the last two years my symptoms had got extremely bad and i could barely go a day without suffering from pain so severe i couldn't even sit up.

In the last two years I thought I had gotten all the test I thought I could possibly get (allergy, endoscope, blood test, biopsys of my stomach, ultrasounds.) The only things the doctors could tell me was I had IBS, Gerds, minor esophageal scarring, and imflamation in my stomach. I tried going on different diets for all of those and my stomach problems still persisted. I was taking as much acid reducing medicine as I could and nothing would work. The doctors and my family were starting to suspect that I was making up all my problems and they were just in my head. I tried to explain to them exactly how i was feeling but they still had doubt. I had been having a hard time dealing with depression throughout the years too and this deffinately didnt help. Finally, my doctor said i had two more options: test for GP or to observe how my gall bladder works. If I still had no results I would have to go on a gluten free diet. So, when the test for GP came back possitive I was ecstatic and yet worried at the same time.

Since, I got the results back I have converted to Step 3 of the GP diet and am on Erythromycain. I am still having trouble eating the right proportions and adjusting to the new rules. Do you guys have any tips for dealing with GP?

By philsphan09
Posted August 30, 2009 at 11:12 pm
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Hi and welcome to the forum. You will find a lot of useful information, and the support you need. The steps diet is very helpful. If you don't feel well, try going down to step 2 or 1. Also, really important, very small meals. Good luck, hope you feel better. michelle

By JoAllison
Posted August 30, 2009 at 11:29 pm
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Sticking with the diet helps a lot with getting rid of the pain & bloating & heartburn (for me it was miraculous, actually). Dropping down to steps one & two when things really hurt helps. Try to eat 7-8 small meals a day (especially the first few months). That's a cup of something or two 1/2 cups of something, maybe up to 1.5 cups. Try to have a protein with every eating occasion if you're still having blood sugar problems, that helps stabilize it.

Keep a food diary to keep track of what you can & can't eat. Not all of us can eat everything on the GP diet. Or we can't eat the same stuff at dinner that we can earlier or vice versa. Some of us can eat more solid stuff in the morning & have to go more liquid at night and some are just opposite - some of us are on all liquids. It's an odd condition in that everybody reacts differently to food.

Adding liquid or gummi vitamins helps with the nutrition. I also do plant based digestive enzymes, probiotics, a greens supplement powder mixed into liquid & aloe juice. [And a couple of nexium -- I was recently able to drop the two Zantac I took in addition)

If you have the time & patience, I blogged everything I've tried since my diagnosis a little over a year ago. You could go to the beginning (scroll to bottom & click on 23 & go from bottom up & back to 1) to see if anything I tried would help you. Sometimes I forget what helped most in the beginning. Anyway, if you're interested, its at http://newnormal.blogstream.com/v1/p23.html.

Come morning the others will come and give more answers. This is a very helpful bunch. I learned more here than I did from my GI for sure. There are good people here. It helps to talk with people who understand how you feel.

Good luck,

Jo

By ShelbyW
Posted August 31, 2009 at 10:50 am
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Hey Beachbum, welcome to the group. I hope that you find it as wonderful as I have... so much information, suggestions of what REALLY works, support and friendship.... really a great group of people here. I know what you mean when you say you were ecstatic about finally being diagnosed. I was so relieved myself to finally have a name for what I was going through. Just to get the validation that I had something real happening instead of that "it is in your head" crap was such a relief. Keep on reading, ask lots of questions and jump on in when you feel like it. We are family here. Shelby

By plushy
Posted August 31, 2009 at 12:30 pm
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Welcom to the group, You are like all of us as to trying what works for you and what does not. I found out about GP more here than my doctor.
Here are a few thing that i do and maybe some of it will help you, i hope,
small meals like Jo Allison said and small portions i try to eat eggs and a 1/2 slice of toast in the morning and then i will drink a protien shake with some vanilla frozen yougert then i will usually try to eat a english muffin with a small amout of cream cheese sometimes i only eat 1/2 with some peaches a teaspoon or sometimes a tablespoon then another protein or vitimen shake then dinner i can have a baked potatoe and really mushey cooked carrots or if i dont feel i can do that i will just do applesauce it changes daily and i have to try plain things but i do try to eat a small slice of cheese for protien that is what i find hard is getting enough of that. sweet potatoes some yougert or vanilla pudding. You may be ok with some of this is just takes time and i am still learning all i can and cant do.

Take Care
Marie

By prayer
Posted August 31, 2009 at 1:29 pm
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On this site you will find many things that people try. Prune juice, probiotics, Miralax. (For me bicarbonate works well) I recommend Miralax first, but check with your doctor. Prune juice at night, Miralax in the morning. I think you will get relief.

By DigmundFreud
Posted August 31, 2009 at 9:06 pm
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I have not been diagnosed with GP but will have motility test in 2 weeks. I have severe heartburn due to a hiatle hernia( had Hernia and relux for 17 years) and wide open lower esophageal sphincter( new). Constantly in pain!! I am taking prevacid and zantac and it is not enough. Thought I was having irregular heart beat it is so severe. I also am not able to fall asleep without Ambien. I am trying to eat very small amounts and very little fat. I had a cookie about 6 hours ago and I am really paying for it. I also have IBS with constipation. Thanks for everyones tips. I am going to look up The GP diet.

By beachbum16
Posted September 1, 2009 at 11:09 pm
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DigmundFreud, your heartburn symptoms sound very similar to mine; i was on zantac twice a day and took prontix daily (a proton pump inhibitor) and even took tums some days and my heartburn was still worse than ever. This new GP diet has worked wonders on my heartburn and I recomend trying it. So far its one of the only things that has put a dent in my heartburn.

And for everyone's advice I just wanted to thank you for all your tips they are helping me determine what and how I should be eating. I really appreciate it.

By Novagrad
Posted September 2, 2009 at 7:06 pm
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Welcome to the group! I have a central line and a feeding tube so I'm probably not the best one to give advice on dealing with the disease, but good luck and you will receive a lot of good advice from this site.

Mimi

By mariadiaz
Posted September 13, 2009 at 9:09 pm
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Jo,

What do you do for constipation? The gummi bears constipate me and domperidone although a help has not helped in that area. Also, doesn't the nexium cause further delay in emptying the stomach?
I have just been diagnosed after being treated for GERD for 4 years with no improvement.
thanks to all

By DigmundFreud
Posted September 13, 2009 at 9:45 pm
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I use miralax for constipation. I don't know if I have gp or not though, I do have IBS (constipation, almost never diarhea) and severe Gerd. I get the tube down my nose for the ph/motility test tomorrow! DF

By JoAllison
Posted September 14, 2009 at 1:06 am
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Hi Maria,

I know how you feel. Before I was diagnosed with GP, I was on the two nexium, two zantac & four sulcrafate a day and still in constant killer burning pain breastbone to ears 24/7 for over a year. Try the GP diet, it's miraculous.

I use Mirilax for the constipation. My doctor said it doesn't hurt to take it long term & to adjust the dosage to what works for me. He has some patients who take a capful every other day, some take a 1/2 cap daily & one who does three capfuls daily. My dosage varies sometimes down to a 1/2 cap every other day to a capful a day, so far- currently at 3/4 capful daily.

There are others here who don't like the Mirilax idea & who use some sort of mixture of aloe juice & prune juice. Someone will be along to give you the recipe shortly probably. I just can't stand prune juice from even before when I was normal, so I don't (I tried recently, but for me, it's not worth it - I do drink an ounce of the aloe juice a day though.).

Yes, I've heard here nexium slows motility some but the reasons I take it outweigh the counter reasons not to, given that the GP diet & my other supplements have helped so very much. While I've been able to drop the sucralfate & the Zantac since finding the GP diet (most the time - I still have occasional breakthroughs), I haven't yet been able to decrease the nexium to one or none without sheer unrelenting pain. Prevacid doesn't work at all. Aciphex isn't covered by my insurance & I can't afford it without. Zantac alone doesn't work.

The sphincter between my stomach & my esophagus was damaged in my first abdominal surgery (full hysterectomy, appendectomy, assorted tumors & a biopsy of the pancreas) when they lifted out the stomach to get at the pancreas, and then kind of forgot about it when someone gashed the vena cava (big vein) & I lost about 5 pints of blood before they got it stopped then closed. So the GERD is likely exacerbated by the GP but not caused by it in my case. They won't do any surgery to further close that sphincter (nissan fundiplication) because sometimes that can worsen GP. The GP was (probably) caused during a later abdominal surgery to remove my gall bladder, when they (different they - different hospital) also decided to detach a bunch of adhesions from the first surgery that had been causing me a lot of pain.

Whatever. I'm alive. I've finally found a combination lifestyle & meds that makes the GERD stop - most of the time - and have also finally figured out how to live with the GP so I don't have many flareups anymore. I just have to eat funny. Which can sometimes get tiresome, but is better than most of the alternatives, you know? ; )

Anyway, try the Mirilax (it takes a few days to kick in), or wait for someone to post that prune juice aloe juice recipe.

Good luck

Jo

By SueBee
Posted September 14, 2009 at 12:57 pm
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Hi beachbum16,
Welcome! Sorry you have to be part of the "club" here but it's a great place to come for support and learn. Sounds like you know about the diet already which is great. It's not easy and I think it's safe to say we all find it challenging. I, for one, tend to eat bigger portions than I should when I feel better and then pay the price. As for the drugs, you will have to experiment and see what works for you. There are several motility drugs (one which you're on, Reglan, and Domperidone) and other drugs to help alleviate your symptoms. All can have negative side effects so you have to use caution and work closely with your doctor. One thing that hasn't been mentioned yet is the importance of daily exercise. Nothing too vigorous. Walking after meals is very helpful. I also go on the elliptical machine, do yoga, and work out with weights. Others go swimming. It's not always easy to push yourself through it - especially when you're feeling lousy - but it really helps. Posture is important too. I know I have a tendency to cave in when I'm not feeling well. I have to remind myself all the time to sit up straight, put my shoulders back, stretch and twist my mid section, and BREATHE! Meditation, focusing on your breath, and quieting the mind is helpful too. Mphotographer recently started a great discussion about this. Check it out. And do the things that make you feel happy. Listening to music, getting outside into nature, taking daily excursions (even if it's just 5 minutes), etc. lifts my spirits. And, if possible, avoid stress and people who are negative and judgmental. Your symptoms will get worse if you don't!
Hope this helps!
Best wishes,
Susan

By prayer
Posted September 15, 2009 at 4:30 pm
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Just did some research on the internet about tums, antacids, etc. They can also make you more acid in the stomach and most contain calcium which really is constipating. Antacids can sometimes make it worse. Check with your doctor and I agree that prune juice, aloe, pinnapple juice, are better choices. Warm coke or gingerale help with heartburn I have read. So does a small amount of milk. Hope you get better very soon

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