Anyone with gastroparesis?

[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]

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]

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]

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]

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.

 

[AmericangirlinFrance]

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.

You'll have to report back about how the Linzess works for you, I will do the same. I never feel good taking the Miralax, but you do what you have to do, I guess...

Edited to add: found out that my insurance will pay for the Linzesss - only $33 per month!! Wow. That was a nice surprise!

 

[dawnball]

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.

If it makes you feel any better, I've been as high as 6 doses per day. On the low FODMAP diet plus some electro-stim, I'm down to one a day, though. The GI told me almost a year ago that I should expect to take Miralax for the rest of my life, and it's just a matter of how many doses I need based on my whole health situation.

 

[disfan07]

If it makes you feel any better, I've been as high as 6 doses per day. On the low FODMAP diet plus some electro-stim, I'm down to one a day, though. The GI told me almost a year ago that I should expect to take Miralax for the rest of my life, and it's just a matter of how many doses I need based on my whole health situation.

That was the other thing I forgot to mention....I am actually basically on the low FODMAP diet because of allergies. My GI had hoped my diet restrictions would help but things have been getting worse.
I don't eat wheat, soy, raw fruits, or. Raw vegetables. I am also lactose intolerant. In addition, I also don't eat nuts,oats, shellfish, eggs, coconut, sesame.

Basically, there is nothing else I can do diet wise. I so wish there was. I wish that my GI problems could be at least partially managed by diet. I would be in heaven!

 

[dawnball]

The diet you described only incidentally has anything to do with FODMAPs. I could easily eat a very high FODMAP diet with those restrictions.

Also, you can do a lot more than you've done. It may not be effective for you - but you're a long way from "there's nothing I can do, diet-wise."

I had a month where I ate nothing but white rice cooked to gruel, eggs scrambled in sesame oil and salt. That's what it took to help my symptoms and stabilize my weight loss, then I could slowly add back in low FODMAP foods. Now I can eat most lower FODMAP foods, as long as I watch my portions and symptoms, and use rice/eggs/oil/salt as a flare diet.

While I was working up my elimination diet, I talked to someone who had to go so far as to eat esoteric proteins (ostrich, kangaroo, antelope) and more unusual fat sources, plus rotate them on a 3-day or longer rotation to feel better.

In addition, you can cut out "real food" entirely, and go to something like Peptemen, or RenalCal with a glutasolve booster, or Resource. That was our next step, if I could find a protein/starch/fat combo I could tolerate. The theory is to give your GI system minimal work to do, and maximum support to heal itself.

I'm not saying that what worked for me will work for you - I'm saying that if that restriction list is accurate, you're fooling yourself if you believe you've tried all you can.

 

[disfan07]

The diet you described only incidentally has anything to do with FODMAPs. I could easily eat a very high FODMAP diet with those restrictions.

Also, you can do a lot more than you've done. It may not be effective for you - but you're a long way from "there's nothing I can do, diet-wise."

I had a month where I ate nothing but white rice cooked to gruel, eggs scrambled in sesame oil and salt. That's what it took to help my symptoms and stabilize my weight loss, then I could slowly add back in low FODMAP foods. Now I can eat most lower FODMAP foods, as long as I watch my portions and symptoms, and use rice/eggs/oil/salt as a flare diet.

While I was working up my elimination diet, I talked to someone who had to go so far as to eat esoteric proteins (ostrich, kangaroo, antelope) and more unusual fat sources, plus rotate them on a 3-day or longer rotation to feel better.

In addition, you can cut out "real food" entirely, and go to something like Peptemen, or RenalCal with a glutasolve booster, or Resource. That was our next step, if I could find a protein/starch/fat combo I could tolerate. The theory is to give your GI system minimal work to do, and maximum support to heal itself.

I'm not saying that what worked for me will work for you - I'm saying that if that restriction list is accurate, you're fooling yourself if you believe you've tried all you can.

I should have been more clear. My GI, dietician and I went over my diet and it is a low FODMAP diet.

Both my GI and my dietician said that we've gone as far as we can with diet changes.

Right now, there is nothing else to do diet wise. We've done elimination diets....haven't found any specific food that causes issues. We can't cut out "real food" entirely. That is not a option....at least to at this point. There's a long back story to that but right now....not an option.

My last appointment was a video conference between myself, my GI and two GI physicians from Mayo Clinic (they are planning on sending me there in June if thins don't change) and apparently, until the underlying cause is found we're at a brick wall.

Everyone thinks that once we figure out what is causing the gastroperisis (no one thinks it's the primary issue....it's probably secondary to something else) and treat that, than the GI problems will get much better.

So I should have been more specific....at this time and point in my treatment combined with the other medical conditions we are dealing with, there is nothing else diet wise to do right now. It's complicated