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Re: Re: illegals :(

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Kim-Thanks, yeah the amitiza does work for me, my BMs became a lot more regular and less hard when I started to use it back in December.  I was dealing with side effects for a while, shortness of breath and some nausea, but that calmed down months ago.  I did worry, however, that it was increasing my bloating, because thats my main symptom that never goes away :( I figured that without the constipaton, the bloating would get better.  I find that after I go, my bloating gets worse, and my tummy feels pretty sensitive in general.

Your questions about my problems with weakness and nausea...it happens every once and a while, and when it gets bad I make the electrolyte drink and that helps.  Can you explain to me why its so important to get electrolytes on this diet and why you get so dehydrated on the diet without them?  I have always tried to drink a lot of water especially since my constipation problems started, but my weakness problems only started once I started the SCD.  I think its definitely tied to dehydration, because it gets unbearable when I have diarrhea.  Perhaps if I regularly do the electrolyte drink and not in reaction to symptoms I could control my weakness better?

Oh, and I try to eat small meals frequently, about 5-6 times throughout the day, but there are times that my bloating gets really bad after a meal that I don't eat for 3 hours instead of 2.  I think its also a mental thing, freaking out that I'm eating too big a meal and then end up eating too small of one.  I have to start calorie-counting I think, I may not be getting enough throughout the day.  Sometimes my " meal " is a very small bowl of applesauce and a banana.

Ellen

 

I deal with chronic constipation as well, have poor digestive motility. I was on low-dose Zelnorm for a while, but when it was pulled from the market my doctor asked my to try Amitiza. Unfortunately my immune system eventually began reacting to Amitiza, so I stopped using it.

I have been on Miralax since I was diagnosed, and it helps too. It is an osmotic laxative, so works in a similar fashion as Amitiza. I did do well on Zelnorm, but now that it isn't available here (and I haven't felt bad enough to go to overseas sources for it) and my body rejected Amitiza, I've found I do well with using Miralax daily and also supplementing magnesium nearly every day.

Of course being on SCD for a long time also makes a difference. Certain SCD foods trigger worse constipation for me, so I have learned what I can and can't eat.

If Amitiza is working for you, then you can continue to use it. I don't think my prescription form of Amitiza had so many non-active ingredients, but I wasn't on it long enough to do a lot of investigation and ask about getting it compounded.

Miralax is now OTC, and is considered safe to use over the long-term. Some people don't tolerate it, of course. It is a synthetic, polyethylene glycol; but this is an ingredient found in most supplements where constipation is a known side-effect. I adjust my daily dosage depending on how well my digestive motility is functioning. If my stools become too loose, I cut back a bit on my dosage; if things get worse, I increase the dosage again. I have realized that my body works in cycles, so I can almost predict when I'll need to cut back on Miralax, and when I'll need to increase back to the normal dosage.

When it comes to digestive motility, and you have known neuropathies and neuromuscular issues, some days are bad despite eating the usual foods. [sigh]

Weakness and nausea are complicated in cause. Are you eating small meals frequently? Are you boosting your electrolytes occasionally? There are lots of other suggestions that relate, so if it continues for you, just ask again.

Kim M.

SCD 6 years

>

> I'm a couple months on SCD and realized I may be ingesting illegals. I've been taking Amitiza for constipation, is that illegal? Also, I've been using store bought ground turkey, and today I notice that it has rosemary extract in it. I haven't been feeling that much better, though I had a good couple days at some point :) But I've been noticing lots of mucus outside my stools, and lots of other symptoms (weakness, feverish) that indicate die-off. I wonder how much of my not improving symptoms have to do with potential illegals I'm ingesting, or its just the prolonged die-off. I'm only eating stage 1-2 foods, and cooking everything verrry well. Bloating and constipation are my main issues, but at the start of the diet, I had some bouts of diarrhea that I think was related to die-off. And recently I had some worsening constipation, but I was traveling, so I hope it'll level off. But my weakness, nausea, etc. also got worse the day after my trip...so again, I'm thinking, die-off?? Seems like the die-off just won't go away. I don't know, should I think about stopping the Amitiza??

>

> --And on a side note, I've been losing weight since I started the diet, almost 5 lbs :( I may have to start seeing a new doc if I can't get it back up. Any friendly doctors in the north new jersey area?

>

> Thanks,

>

> Ellen

>

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