Anyone with gastroparesis?

[disfan07]

Originally Posted by AmericangirlinFrance

Wonder if you have tried the medication domperidone? Not available in the U.S. - your GI has to give you a RX and you have to order it from Canada. It works like Reglan but WITHOUT side effects. It also acts as an anti-emetic.

I have just started taking it, so I'm curious to see if it will help me. I also take Miralax and Zofran. I have terrible chronic constipation - I get so constipated, which makes my nausea worse, which makes me not eat, which makes the constipation worse... you know how it goes.

Hope everyone on here finds some relief soon!

A pharmacuetical here has been trying to get that drug approved here for decades. Even though trials showed it was safe and effective, the FDA still wont approve it. Its ridiculous.

Unfortunately there are a lot of medications that many of my doctors would like to try but they are only approved in Europe or Canada. Same with some drugs that are approved in the US but not approved for what I need it for (yet its been proven to work in other countries and is approved there). And unfortuantely we cant afford it without insurance coverage.

My GI did mention though that there are some new treatments/medications from Eurpoe and Canada that will be available in the US early next year so we are just waiting and crossing our fingers. He said they have had amazing results in Eurpoe with these medications for years but are just now figuring it out here.

Yeah the chronic constipation is the worst. I ended up in the ER at the beginning of November with severe consitipation. But becasue I wasnt in too much pain (I'm used ot it) they released me and put me on magnesium citrate. I was on 1 bottle of mag citrate PLUS 3 doses of miralax EVERY DAY for 15 days before it worked. But the day it started working was also the day I go the stomach virus so we dont know if the mag citrate actually worked or if it was the stomach virus...lol.

[geek+nerd]

New but related question. Has anyone noted gastroparesis when making ADRs? DH and I are about two weeks away from being able to book and have scoured menus to decide where are the most likely places I will be able to find something to eat. My best bet looks like it is going to be off kids menus (I am excited for Blue Zoo!) even though I know I won't eat a whole portion of anything.

Just wondering if anyone noted it on ADRs like people do for allergies or if you think this wouldn't be necessary.

[clanmcculloch]

I think whether or not to make a note on ADRs is whether or not you'll need alterations made to your meals. What kind of alterations do you foresee needing? That if anything would be what you would note, not the diagnosis. If you'll be ordering from the regular menu and just ordering kids meals or appetizers or sides then there's no need to notify anybody ahead of time. If you need extremely low fat (and I'm not just talking about the kind of low fat that you can do by way of just choosing white meat over dark meat; I say this one because fat is slower to digest and extreme low fat helps some with GP) then it doesn't hurt to make a note. If you'll just need sauces left off then just asking your server for that is sufficient without any kind of head's up on your ADR. I hope this is making sense.

Short version: make a note if you need alterations to your meals, don't make a note if you don't need alterations beyond just having stuff prepared plain.

[geek+nerd]

Thanks. I think I am going to make a note of something like "food needs to be prepared with no added fat or fiber." I have not had a vomiting episode since starting the GP diet and my nausea, while still there, is not nearly a severe as it was before I was diagnosed and started the diet.

[AmericangirlinFrance]

Originally Posted by geek+nerd

Thanks. I think I am going to make a note of something like "food needs to be prepared with no added fat or fiber." I have not had a vomiting episode since starting the GP diet and my nausea, while still there, is not nearly a severe as it was before I was diagnosed and started the diet.

We're supposed to leave tomorrow for WDW. No ADRs... I am scared of eating I have a feeling I'll be doing a lot of liquid calories and some of my safe foods I'm bringing (saltines, Rice chex, fruit cups).

I'm feeling a little better on the new medication... but still just have that underlying "icky" feeling pretty much all the time. It's better when I don't eat, but I can't do that forever. I feel like food is the enemy.

[AmericangirlinFrance]

We are supposed to leave for Disney today and of course I woke up feeling horrible. Stomach, I hate you!

[geek+nerd]

Hang in there! I woke up feeling awful, too, and stayed home from work. This condition just sucks.

I hope that you are able to have a good trip. Who knows? Maybe with all there is to see and do you can be distracted from GP for awhile.

Wishing you lots of pixie dust and magic!

[AmericangirlinFrance]

Looks like we are going to cancel our trip. I just don't think I can do it with how I'm feeling (and have felt recently). Bummer. When I'm nauseous, even a little, it just is debilitating... maybe other people are able to power through it better than me. I just can't.

[geek+nerd]

That's awful! I'm sorry to hear you won't be going. Feel free to pm me any time you need to talk to a fellow GPer. Hugs!

[AmericangirlinFrance]

Thought I would resurrect this thread to see how everyone is doing! I would say I'm probably 40-50% better than I was in early December, which is wonderful. I think it is because around that time, my doctor increased my dose of domperidone.

I saw the GI doc today, and he is going to increase my med dose a bit more, and start me on a new medication for the constipation - it is called Linzess. He thinks the constipation, incomplete emptying, etc. (TMI, sorry!) is contributing to the nausea and fullness feelings along with the gastroparesis. This med was apparently just approved by the FDA and released fairly recently, so we'll see how it works. I know some of you struggle with these issues along with GP so I'll report back on how it works.

Anyway, my GI is optimistic that with the new med and the fact I'm doing better, I may get close to back to normal in a few months. We'll see, but the thought of it makes me excited. He wants me to gain 3 lbs by my next appointment in 6 weeks... so we'll see about that.

My DH and I will try to reschedule our Disney trip for the spring if I am feeling better.

Hope everyone had a wonderful Christmas and New Years!

[disfan07]

Originally Posted by AmericangirlinFrance

Thought I would resurrect this thread to see how everyone is doing! I would say I'm probably 40-50% better than I was in early December, which is wonderful. I think it is because around that time, my doctor increased my dose of domperidone.

I saw the GI doc today, and he is going to increase my med dose a bit more, and start me on a new medication for the constipation - it is called Linzess. He thinks the constipation, incomplete emptying, etc. (TMI, sorry!) is contributing to the nausea and fullness feelings along with the gastroparesis. This med was apparently just approved by the FDA and released fairly recently, so we'll see how it works. I know some of you struggle with these issues along with GP so I'll report back on how it works.

Anyway, my GI is optimistic that with the new med and the fact I'm doing better, I may get close to back to normal in a few months. We'll see, but the thought of it makes me excited. He wants me to gain 3 lbs by my next appointment in 6 weeks... so we'll see about that.

My DH and I will try to reschedule our Disney trip for the spring if I am feeling better.

Hope everyone had a wonderful Christmas and New Years!

Linzess is the same medication my GI wants me to try...we are just having some major issues with our insurance covering it and it's too expensive out of pocket so we're in limbo now. Luckily he gave me a months worth of free samples so I'm good for the next month.

Lol about the weight gain....my internist wants to see me gain 15 lbs to get back up to 125lbs. I weigh about 109 right now at 5'3....I lost about 35-40lbs because of my stomach issues. I'm sitting pretty right now at about 108-109lbs depending on the day....

[AmericangirlinFrance]

Originally Posted by disfan07

Linzess is the same medication my GI wants me to try...we are just having some major issues with our insurance covering it and it's too expensive out of pocket so we're in limbo now. Luckily he gave me a months worth of free samples so I'm good for the next month.

Lol about the weight gain....my internist wants to see me gain 15 lbs to get back up to 125lbs. I weigh about 109 right now at 5'3....I lost about 35-40lbs because of my stomach issues. I'm sitting pretty right now at about 108-109lbs depending on the day....

Oh, I am nervous that my insurance won't cover the Linzess either. My GI also gave me 30 days of samples to try it out. I guess I should check with my insurance now to avoid any surprises at the end of the month. My GI did tell me I'd probably want to give the pharmacy a heads up as they would probably need to order it. How is it working for you so far? I just started my first dose today - I am taking the higher dose (290 mg). My GI said he thought it might be effective enough I wouldn't have to take additional Miralax, which would be great... so we'll see.

Yeah, I feel you on the weight gain... 109 is pretty low! I am about 117-119 but I am 5'9''... I'd like to get back to 130.

[disfan07]

Originally Posted by AmericangirlinFrance

Oh, I am nervous that my insurance won't cover the Linzess either. My GI also gave me 30 days of samples to try it out. I guess I should check with my insurance now to avoid any surprises at the end of the month. My GI did tell me I'd probably want to give the pharmacy a heads up as they would probably need to order it. How is it working for you so far? I just started my first dose today - I am taking the higher dose (290 mg). My GI said he thought it might be effective enough I wouldn't have to take additional Miralax, which would be great... so we'll see.

Yeah, I feel you on the weight gain... 109 is pretty low! I am about 117-119 but I am 5'9''... I'd like to get back to 130.

Yeah check right now because it could take a while if your GI needs to fight for coverage. My doctors have had to fight for coverage of many of my medications adn its taken anywhere from 2-10 weeks to get coverage

I am actually not starting it until this weekend. I've had a lot of adverse reactions to medications recently (a lot of allergic reactions) so my GI only wants me to try it when I am home.

Yeah I am on 4 doses (17g each) of miralax a day which is the highest dose of any of my GIs patients and it still doesn't really work that well.

My GI doesn't think i'll get off of miralax anytime soon but we're just trying to keep me out of the ER and the hospital.

[clanmcculloch]

disfan, is your GP suspected to be related to your food allergies? Have you ever discussed Gastrocrom with your GI doctor? It's a mast cell stablizer/h2 histamine blocker specifically designed to work in the GI tract. It makes a difference for my DD14. None of her issues are nearly as severe as yours but her gastric emptying went from considering a GP diagnosis (obviously not severe if only at the point of considering) to normal between her elimination diet, very specialized digestive enzymes and Gastrocrom (enzymes are based on VERY specific testing).

[disfan07]

Originally Posted by clanmcculloch

disfan, is your GP suspected to be related to your food allergies? Have you ever discussed Gastrocrom with your GI doctor? It's a mast cell stablizer/h2 histamine blocker specifically designed to work in the GI tract. It makes a difference for my DD14. None of her issues are nearly as severe as yours but her gastric emptying went from considering a GP diagnosis (obviously not severe if only at the point of considering) to normal between her elimination diet, very specialized digestive enzymes and Gastrocrom (enzymes are based on VERY specific testing).

We had discussed it months ago and they tested me for mastocytosis and the tests were negative so they did not go ahead with it. My allergist and GI were shocked the testes were negative but they've run the tests 3 times and always negative.

They still thing my GI problems are secondary to an autoimmune/rheumatological disorder. I have an elevated ANA and elevated CRP. I'm waiting to hear from my rheumatologist about other results.