Acacia, Lactulose, Miralax, Zelnorm, fluids, fiber, the "Diet"
#111951 - 10/10/04 10:16 PM
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MissyB
Reged: 07/22/04
Posts: 67
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Guys, I'm trying EVERYHING, I mean REALLY. I want to be normal, not like this and nothing is working. I saw the GI Dr 12 days ago and he put me on Lactulose in addition to everything else, he says he only gives that to the worst people, (you know what I mean, I don't *think* he thinks I'm the worst, lol) What kind of reaction will I get when I tell him the Lactulose isn't working? I'm afraid he will think I'm lying and I'm not really doing everything. I saw his eyebrow go up when I told him all the other stuff wasn't working. All the lactulose is doing is giving me terrible bloating and gas, but nothing is moving. I mean to the point where my belly button is no longer an "in-y" it's an "out-y" I HATE being like this, it's so embarrasing. I feel like I should never eat again sometimes, then other times, maybe if I just eat something it will trigger something to move. I feel like it's something more than IBS alone sometimes, but he's made it clear he doesn't, and I wonder if he's be open minded enough to change his mind now or if he'll just say "I don't know what to tell you" or something. Can they do that?
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Not everything works for everyone! How much SFS are you taking? As you are C, you might find another SFS works better to get you moving. I know Kandee takes psyllium - it causes gas but seems to work better on C.
How much insoluble fibre do you eat? When you were diagnosed, did you have a colonocopy done? If so, then I'd guess the diagnosis is safe.
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Oh Sweetie, been there, done that! Its miserable!! A few years ago I was put on the miralax and I'm still on it. It sounds like you have tried it? How long were you on it and at what dose before you decided it wasn't working?
The Zelnorm I find I build up a tolerance to very quickly. I "save it" for bad attacks but I don't find that to be a long term solution at all.
As mentioned, people with C, tend to need more insolubles in their diet than teh D people!
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Taking it one day at a time.....
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Oh yes, in case I'm confusing anyone, I'm on all of the above, and getting no results. I feel like I spend my whole day downing goop and concotions! I got the IBS book 2 months ago and have been following it seriously, learning what foods set off the painful cramps has been invaluable. But the C is not letting up. I almost feel like my intestines are paralyzed because they just don't move. I won't go until I am absolutely stuffed all the way to the top, then only enough to relieve the immediate pressure, I don't feel any control in between. I was on Benefiber with poor results until I got my acacia, which so far, makes no difference. Neither does the Lactulose or the Miralax.  I am frustrateed because I have tried everything I can dig up to help myself naturally or medically the last 3 years and it just progressively keeps slowing down no matter what I do! I had an episode of C about 3 months ago where I didn't go for 2 1/2 weeks regardless of all the fiber and medicine, I ended up being in the hospital for 6 days with a tear and bad infection, and had to have PICC line for almost a month. I had a colonscopy afterwards to make sure everything healed, and it did. But this is why I get so nervous, I don't that whole thing to happen again 
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Ps, I have tried psyllium, and it too only give me bloating and cramps, but nothing moves, and I've been on the Miralax since that time 4 months ago that I was in the hospital. And curiously, something like exlax or dulcolax WILL work, but they will cause me such extreme pain I am sick to my stomach the whole day, I also know they are bad for you so I don't want to use them, and my Dr told me not as well.
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I'm sorry you are having such a rough time. How much SFS are you taking? It took me a while to get to a high enough dose that I started having anything close to a regular BM.
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How much miralax are you taking? I usually fill the cap up to the line and take it in the am on an empty tummy. I mix my Acacia right in with it. After drinking my morning goo, I'll eat some oatmeal or taost and usually have a BM. If I find myself getting backed up, I will add a second dose of miralax at night for a few days.
Be sure to take it before eating. Be sure to drink a lot of water. It is an osmotic laxative, meaning it pulls water into your colon to work. If your are not getting enough water, it can't work right! I know the last thing you feel like doing is exercising but it does help. Even getting out for a walk after dinner will help get things going.
Also remember that use C people usually need more insolubles in our diet. When I first started Heathers diet I was confused and thought all insoluble stuff was bad. My C got so much worse! We need the insolubles, we just have to be sure to eat them properly!
For immediate relief, try a glycerin suppository. They will stimulate things down there and usually produce a BM within minutes. It probably won't give you full relief but it should start the ball rolling! In the meantime, try increasing the miralax. My dr told me I could play around with the dose as much as I needed to! When you increase the dose, you may feel a little more bloated at first (gee, just what you need!) but it will go away so stick with it!
Feel better soon sweetie, I know how miserable it can be!
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Taking it one day at a time.....
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Have you had any tests done?
If you are not comfortable with this GI, you can always get a second opinion. If he does not believe that what he has prescribed is not working for you or you are not at your "worst", he need to experience it - just for 24 hours!!!
I hate Drs. like that and do not tolerate them. You need him to help you, not make you feel inferior or stressed.
Express yourself to him. If he still does not change, he does not deserve to be called Dr. and I would move on to another GI.
This happened to me and I moved on, I'm glad I did.
Hang in there.
Lene
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God never promised life would be easy, but he did promise to provide a way out!
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or did I just get dumped by my Dr?  he says he's never had anyone on such a heavy regime before, he want me to go to Mayo because he doesn't have access to their motility testing or experimental drugs. (experimental?  )
After I go there, do I go back to him if they figure anything out? I wonder how long this will take.
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Mayo clinic is one of the best medical centers! I think its a good thing to go and see what there dr's have to say. Not sure about who would do the follow up, I guess you would have to ask them that! Have you made your appt already?
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Taking it one day at a time.....
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