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Old 01-09-2013, 06:31 PM   #31
AmericangirlinFrance
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Originally Posted by disfan07 View Post
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!
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Old 01-12-2013, 10:24 PM   #32
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Originally Posted by disfan07 View Post
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.
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Old 01-13-2013, 12:25 AM   #33
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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!
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Old 01-13-2013, 11:30 AM   #34
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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.
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Old 01-13-2013, 12:22 PM   #35
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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
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