Frustrated! GP Got Worse This Week - Newbie - Discussion - AGMD GI Motility Disorders Support Community

Hello all,

I am so glad I found this forum. I have been reading through a lot of the posts and this seems like such a wonderfully supportive group. Here is a little bit about me:

I have had intestinal problems since 1998. Originally, I was diagnosed with IBS and all of my issues had to do with my colon. I dealt with it and it usually wasn't a big deal. Flash forward to spring of 2007. I asked my doctor to test me for gluten intolerance. I had preliminary markers for Celiac and I had further testing in the fall of 2007. They never "confirmed" Celiac, but told me to stay away from gluten. So, I cut out gluten, but I still had problems (intestinal cramping, nausea, mild acid reflux).

In October of 2008, I started having pain in my upper right quadrant. It got so bad that I went to the ER. My liver and pancreatic enzymes were elevated and the doctor thought I had a bile duct obstruction. So, I was admitted, had a HIDA scan for my gallbladder, which was normal, and was discharged. That night, I ate a normal sized meal and 6 or so hours later, I woke up with SEVERE nausea (I couldn't move a muscle without feeling like I was going to throw up) and burning in my stomach. I threw up 3 times. I have NEVER felt that kind of nausea before, it was unreal.

Long story short, I was sent to a gastroenterologist, who performed an endoscopy (which was normal) and finally, a GES. I was diagnosed with gastroparesis.

Since the bad bout in October and some mild issues in November, I have been healthy. This summer, I went through some mild bouts of not being able to eat much and I had acid reflux. It was incredibly frustrating, but nothing like I am experiencing now.

I have been experiencing acid A LOT lately, but usually, I go to sleep and when I wake up, I'm better. That changed this week. Each day this week has gotten progressively worse, until today, which was actually a little better. All I had on Friday was some vegetable broth. The acid was SO severe, I felt like I was going to drown in it.

I am so frustrated because I thought that maybe I had beaten this thing because it hadn't bothered me that much for nearly a year and then BAM, it hit. I LOVE to eat and it is incredibly upsetting for me that I can't eat at all at times. I am also afraid that this is going to get worse and I worry SO much about having to be on tube feedings. I don't know what I would do if that happened. I don't really have any questions to ask specifically, except how do you cope with this?!?!

I have thought that it would just go away, but I'm finally coming around to believing that this is a chronic, life-long condition that I have to deal with. That is why I am here.

Thanks in advance for any help and words of wisdom.

~Meegan

By macbeth719
Posted November 8, 2009 at 9:05 am
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I am sorry you have to go through this. GP will come and go, good days bad days. WRT your acid, keep in mind that with GP, things stay in your stomach, including stomach acid. Let gravity be your friend. Stay upright, walk around, sleep sitting up (uncomfortable at first but you will eventually find that "sweet spot"). Are you on an acid reducer or PPI? You can get Pepcid (aka Famotidine) or Prilosec (aka Omeprazole) over the counter. Tube feedings are not the worst thing in the world (just can't wear a bikini with grace). The nice thing about a G tube is you can vent your stomach to get relief. You know, with pancreatic enzymes up, are they sure you don't have pancreatitis? I happen to have both and the RUQ pain is classic for pancreatitis (in light of the fact that the gallbladder is OK). Keep on top of your symptoms and keep going to the GI until your symptoms are under control.

Good luck

Teresa

By katbrow
Posted November 8, 2009 at 9:13 am
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Dear Meegan, I am so sorry to hear of your troubles. I know what you mean about the acid reflux. Mine is so bad that my tongue stays sore and my throat hurts from it. I have found if I eat the six small meals a day and just kind of snack on things, soft and small things, in between it helps to control the acid. Nexium helps me also but I get headaches from it so I don't take it often. I am on Zantac 300 mg twice a day and my doctor told me I could take it three times a day need be as it is a very old and safe drug. I have been on it for about fifteen years I believe. I drink root beer when I eat a meal to help digest the food as the proton pump inhibitors cut down on the acid in your stomach and slow down digestion which is not something I need. I had a bezoar in the beginning because I was eating a lot of fiber, which I thought I was digesting, but find that we are to avoid fiber in our diet as we cannot digest it. Nothing with skin on it, no lettuce, I cheat occasionally and eat a couple bites of steamed or boiled cabbage and get away with it as long as I drink my root beer. I found that back when they first discovered gastroparesis and people had bezoars that if they put a nasalgastric tube in and ran coca cola through the tube into the stomach the acid in the coke would dissolve the food, thus I use root beer as it is the one I have found that does the job.

I hope this will be of benefit to you. Others have a little different diets as to what they can tolerate so you must just do a trial and error type thing until you find what works best for you but the six small meals are the only criteria that does not change. Some only drink smoothies. I too love to eat so I try to be inventive in ways to have soft food to satisfy my hunger for real food. Wish you well and hope this is helpful .

Katherine

By Meegs82
Posted November 8, 2009 at 3:01 pm
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Thank you for your responses, I REALLY appreciate it!

Teresa,

I am on Protonix 40mg once a day. It seemed to help at first, but not so much anymore. I used to live on Zantac 75mg and then upped it to 150mg. Then that stopped working. I find that the only thing that gives me SOME relief is Pepto Bismol. It works better than any of the aluminum antacids like Mylanta, Maalox, and Amphogel. As for pancreatitis, no, I don't have it. All of my liver and pancreatic enzymes were back to normal by the time they discharged me, so it really is a mystery. Although, I had a 5-week bout of RUQ in April and a surgeon came THIS close to taking out my gallbladder, even though all of my tests were normal. I still have RUQ from time to time.

I am still on a path to figuring out everything that is going on with my body. I am seeing a new doctor in December and my GI, unfortunately, is pretty useless. All he wants to do is put me on Reglan, which I just got filled by another doctor, but I am staying as FAR away from it as possible for as long as I can.

Thank you for your wishes, I will see where everything takes me.

Katherine,

I did not know that you could take 300mg of Zantac twice a day. Zantac is hit and miss with me, sometimes it works and sometimes it doesn't. Then again, I have never taken over 150mg at a time. PPIs slow down digestion?! I had no idea! I wonder if I should talk to my doctor about discontinuing mine. Do you think they really help at all? I mean, since everything is related to the stomach emptying, if food is just sitting there, you are bound to have acid, so what good will a PPI do, right? I mean, I really don't know.

That is very interesting about the root beer. I can only imagine that the acid in soda would break things up in the stomach. I do not drink soda, but I might experiment to see if it helps. Do you have any suggestions for smoothies? I love fruit smoothies, but the more I read about GP, the more it seems that I should stay away from fruit. I am seeing a nutritionist tomorrow and hopefully, she will be able to help me.

Thank you for your help!

~Meegan

By gpgirl5
Posted November 8, 2009 at 6:18 pm
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Hi Meegan. Can you ask your doctor for something other than the Protonix,since it's not working? Keep trying things until you hit on something that works for you.

Also - believe it or not, Gaviscon (over the counter) works wonders for me when I am having a reflux flare-up. The liquid is great - really helps keep the acid down. It has often helped me sleep at night when there was no way I could lie down due to acid. The chewable form also works for me, but i think the liquid is best. A friend's gastroenterologist has told her that Gaviscon 'floats' on top of the stomach, thereby blocking acid from going up. Not sure about that - but it does work somehow for me.

It is crazy how this condition can flare up at any time - out of the blue - and be really bad. It happens to me too.

For smoothies - try banana and peanut butter! I love it. Bananas are one fruit that I can have. Avoid berries because the seeds don't blend up in the blender. Some people like mango. Also put in a drop of vanilla for flavor. I also put my Benefiber in it.

By Roscoelady1974
Posted November 8, 2009 at 8:15 pm
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I'm going to try the soda also- I haven't had any in a looooooooong time. Make sure to get the caffeine free since the caffeine can make things worse. I love root beer.

Banana and peanut butter- YUM! I can tolerate canned peaches and pears or the prepackaged ones. Less fiber in them. And apple sauce.

Hope you continue to feel better.

By Wantakugel
Posted November 8, 2009 at 8:27 pm
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Smoothies. You can try straining the seeds of berries (I'm too lazy), canned peaches and pears are on the OK list, and different combos of yogurt, PB, banana and Kefir are good. As far as I can tell, only the pomegranate Kefir is without seeds. (I'm new at this, too.)

I'm not allowed any fiber, by the way.

When acid wakes me up at night I head straight for the animal crackers and gobble 'em up. Those, along with ginger snaps and sorbet are among the permitted desserts. For some reason they seem to soak up the acid!

Being upright really does help a lot.

Did any of you receive from any source a list of foods that are OK and those that are not? I have the feeling that some of our friends here have not received this info. Do we have a list online somewhere? (I got mine from my nutritionist when everyone thought the weight loss and lack of appetite was depression. : )

By Meegs82
Posted November 8, 2009 at 11:19 pm
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Gpgirl, I have never heard of Gaviscon. I will check into it though. I just looked it up and saw that it is similar to Tums, which don't work for me. But maybe the liquid will work, it sounds like it's great for you. Bananas and peanut butter sound REALLY yummy! You're right about the Protonix. I didn't even take it today 'cuz it does no good and if it slows digestion, then what's the point? I have heard about avoiding berries, so I am, but of course, they are my favorite. Give me a raspberry, blackberry, strawberry smoothie any day!

I do love peaches and pears though, so I will try to see if I can tolerate those in a smoothie, thanks Roscoelady! About applesauce: I read that the pectin in apples can contribute to slow digestion. Does this just vary by person? I haven't tried it during an episode yet, so I don't know. I didn't know about the caffeine. I am not a soda or coffee drinker, but I drink iced tea ALL the time. Do you think the caffeine in tea could aggravate GP?

Wantakugel, animal crackers is VERY interesting. I can't eat them, but there is a brand of ginger snaps I can eat. Maybe I'll try that!

As for a list of foods, here is the best diet info I have found:

http://www.healthsystem.virginia.edu/internet/digestive-health/nutrition/ga stroparesis-diet.pdf

I found the info on my own and then my GI doc gave it to me as well.

I have a couple of other diet restrictions which makes this even more difficult. I'm a vegan and I am gluten intolerant. Does anyone else have these issues? Veganism is by choice, gluten free is not.

My main problem is learning how to put everything together into some sort of meal plan. I am TERRIBLE at cooking and concocting things. My husband and I go out to eat ALL the time, so this is an enormous adjustment for me.

Thanks again for all of the help!

By GinaB
Posted November 9, 2009 at 3:35 am
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Dear Meegs82, Hi, saw your post and thought I would offer this: www.vegfamily.com/health/gluten-free-vegan-diet.htm. There's lots of info there for us to use. Also have you ever tried Sunshine Burgers? They are made from sunflower seeds, brown rice, beans and and veggies. They are usually in the frozen section and are delicious. There is also one called Ruth's Omega Burgers. I think I found other sites for you to use also. www glutensolutions.com and wwwmissroben.com It is hard to find good things to eat when limited? Good Hunting for recipes. Warm Wishes Gina

By DigmundFreud
Posted November 9, 2009 at 7:09 pm
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Caffeine definately makes reflux worse, I am not sure about it's effect on GP. THe web site you posted for the gp diet is written by a dietitian with a masters, this is an excellent source of information for everyone! I posted a discussion on gluten a couple of weeks ago, it has some websites listed. Title is Info on gluten intolerance. DF

By gpgirl5
Posted November 9, 2009 at 7:52 pm
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I have a hard time with apples - even apple sauce. I used to tolerate it, but not anymore. However - I can eat a little apple pie! Go figure. The foods we can tolerate do vary from peron to person, depending on our stomach's individual sensitivities.

It does take a while to figure out a good menu plan. Being a vegan will make it a little harder (for instance, protein. I get it from fish and eggs mostly. We aren't supposed to eat beans). Here are some things I found to be good. Maybe you can make meals out of them.

Vegetables: well cooked carrots; cooked mushrooms; sweet potatoes; baked potatoes; canned pumpkin (pumpkin muffins!), V-8 juice. I think that's it!

Fruit: Bananas; canned peaches & pears; melon; possibly well cooked apples; cranberry sauce (the one that slides out of the can); fruit juices without pulp.

Pasta - any. I prefer the smaller ones (pastina, couscous, alphabets...). Couscous is great - comes in good flavors.

Tomato sauce

Cereal - Cream of Wheat; Special K

Hummus (I make my own - ground chic peas, a little garlic, lemon). The problem is - what to dip into it? Pita bread is good - or, usually I just eat it with a spoon!

Peanut butter and jelly!!! (on Wonder Bread of course!)

Soup - make your own with the carrots, potatoes and mushrooms & add some spices you like. I use roasted garlic too. Matzo ball soup is good too!

White rice (can also go in the soup)

By Meegs82
Posted November 9, 2009 at 8:37 pm
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Thanks for the site link, Gina, I have never seen that one before!

Gpgirl, thank you SO much for all of the ideas! Right now, I am nauseated and have some acid and am very full. I had black beans, rice, and guacamole for lunch, my first "big" meal in nearly a week. Guess it didn't go over too well. I know we are supposed to stay away from beans, but I am now hard-wired to be a vegan, so it is REALLY hard to just give them up.

I saw a dietitian today and she specializes in gastro-intestinal disorders, which I didn't know prior to making the appointment, so that's a plus. A problem is that she told me that the vegan diet and the gastroparesis diet are completely contradictory. I already knew that, but I didn't want to face it. I REALLY don't want to give up being a vegan, but I am afraid I might have to in order to be healthy. Fiber and veggies are all I eat and now with GP, I can't do that and I just don't know what I am going to do! I feel really lost right now and I'm not sure how to really get on track with all of this. I am so ill right now that I definitely won't be eating dinner. I'm not sure I can even choke down my soymilk mix (soymilk, hemp protein powder mix, rice protein). I wish I could have SOMETHING and my husband just filled the house with the aroma of his frozen dinner...fabulous.

Sorry for the rant, I'm just frustrated...again.

And thank you all again for the help!

By gpgirl5
Posted November 9, 2009 at 10:02 pm
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Hi Meegan. Sorry this is so tough for you. You will adjust - it's hard at first.

Just wanted to comment about the Gaviscon. It's not like Tums at all. Tums does nothing for me. (Might as well eat a tic tac - Same results)! I hope you can find some relief with it. If not, keep trying things. You'll find the right combination.

By GGCPTEACH
Posted November 9, 2009 at 10:36 pm
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Meegan,

Did the nutritionist suggest any dishes with Tofu? It is suppose to be low in fiber. The tough stuff is this diet ( GP) is so against what people say you should eat to be healthy. My mom eats a lot of white rice. She also eats cereal( Frosted Flakes, Corn Pops, Corn Flakes). She also likes Pepperidge Farm White Original bread. She uses egg substitute and makes a French toast. She loves butternut squash and both white and sweet potato without the skins. She loves yogurt and frozen yogurt. Wondering if you could have Soy versions.
She eats diced peaches and pears and occasionally will eat sliced cantaloupe. Applesauce is also a good choice for her. She has recently started to eat Stella Dora cookies. Not sure if any of these thing fit into your Vegan Diet. I am taking mom to a nutritionist soon as she is getting bored with the same old things and I try to find new things. She fortunately eats fish, eggs, and chicken. Pasta usually works well too. She just has to eat white pasta. I wish you luck. Hang in there.

Gayle

By Meegs82
Posted November 9, 2009 at 11:43 pm
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Gpgirl, that's interesting 'cuz when I Googled Gaviscon, it said it was in the same class as Tums. But I can see how one might work better than the other. Pepto Bismol helped me tonight. I took it and a Zantac 150 and I was amazingly able to ENJOY my soymilk mix.

Gayle, the nutritionist hasn't given me ANY foods yet. It was out first meeting and she pretty much just filled me in on basic GP info and got my history. I guess next time we will start on the actual meal plan, which won't be for another 2 weeks as I am going to NYC next week. I'm hoping for some great tofu dishes since I love tofu anyway. She did mention pureeing things, but she hasn't given me anything specific yet...which is a bit frustrating since I want to get started. At least pasta still works with a gluten intolerant/GP/vegan diet. I don't know what I would do if I couldn't have pasta.

And you're right, everything we learn that is "healthy" for a normal digestive tract is just about the opposite for us GP sufferers...which just flat out stinks.

Thanks for the encouragement, I appreciate it.

By busyteacher
Posted November 10, 2009 at 6:13 am
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I am mostly on a liquid diet, but my GP seems to have "waves". I've gotten better at predicting what will set off a bad spell (stress, meds, fatigue, illness, foods...etc.)
Some people do recover entirely--or go years between difficult spells. so don't give up on recovery.

By NancyL
Posted November 10, 2009 at 8:35 am
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Megan My diet is vegan for the most part- Smoothies with soy protien powder, pinapple juice and strawberries. V8. tomato, butternut squash and mushroom soups. saltines. Not sure about the cornflakes or fruit flavored cheerios being vegan. I know the Slimfast is not. I was a vegatarian before I got sick mostly because I just wanted to be healthy and feel good. Now the foods I choose to eat -I eat for the same reasons- just trying to feel better and healthier. Unfortunately the food selection is vastly different. I really hope you don't get to feeling as sick as I have felt since this disease came into my life. But I know that I had to concentrate on what I can eat and manage to feel the best. In the beginning right after my surgery I spent a month eating just milk chocolate. Anything else made me vommit violently. Now anything that does not cause stomach pain and severe constipation is OK with me. I know that vegans don't do jello and I imagine gummy bears to be out as well. But I can tell you I started feeling better and more energy once I started taking the gummy bear vitamins and calcium.
And I have made the same mistake with the beans. I love refried beans- although the last time I tried them will be the last time they ever pass my lips. I thought the fact that they were completely smashed and soft would make them work. WRONG BIG TIME :)
Nancy

By Novagrad
Posted November 10, 2009 at 4:24 pm
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Hi Meeghan:

Welcome to the group! I think you will find that people in this group are extremely helpful. I also have severe GP and my doctor does not think it will get better. I have a j-tube as well as a hickman for the times that I need TPN. I've had so many line infections that we try to stay away from TPN but I also have malabsorption and have trouble getting what I need from the j-tube feedings. I also have a PEG tube that I drain to a drainage bag 24/7 and sometimes I suction from it which helps. I still vomit almost daily. Every day is completely different. I never know how I'm going to feel. The GP has caused other problems like osteoporosis and severe spinal issues.

Once again, welcome to the group. I hope we can help you get the answers you need!

Mimi

By Meegs82
Posted November 11, 2009 at 1:38 am
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Nancy, it's good to hear from someone who eats mostly vegan and has GP. The dietitian really had me worried, like it's just too complicated to do both. If I tell her I want to make it work, then she should try hard to do it, right? I'm the one paying HER. Yeah, I wouldn't eat the gelatin stuff, but I have found good vitamins and I am also working with a naturopath for alternative therapies. She just started me on digestive enzymes, probiotics, immune defense capsules, and intestinal repair powder. On top of GP, I have leaky gut syndrome. Ironically, the diets for the two COMPLETELY contra-indicate each other. Go figure. I also have yeast overgrowth and might have Candida, not sure.

It's interesting to hear that mashed up beans don't work. I was thinking that I would do that! Bummer! I guess I could try it and see if it works for me. I LOVE my beans!!!

I have a question: do any of you know if it's possible to not have nausea with GP? I RARELY have nausea and except for the initial onset of my GP a year ago, I have never thrown up or even come close (knock on wood). My main symptoms are fullness and acid and sometimes it isn't even full-on acid, it's like a feeling in my throat. It feels kinda constricted, but not to the point of causing breathing problems and sometimes it's like there's a lump there. It's really hard to explain. Is this fairly normal? I'm just confused about symptoms and how they differ from the ones I read the most about.

Thanks!

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