I am at a loss!!!
#306231 - 04/30/07 10:14 PM
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shonaw
Reged: 04/30/07
Posts: 1
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I was on Zelnorm for over 6 months until the FDA did the voluntary recall. Now I am in a world of hurt, in every sence of the meaning. I have done what my doctors have told me. Changed my diet, quit smoking (after 20years I was ready, been 1 month now). Taking the Zelnorm was the only thing that helpe me, I had regular Bm's with no problem. Now that I am unable to get the Zelnorm I can't have a Bm. I have tried so many different stool softners, laxitives....etc. The pain is so severe that I end up in the hospital taking the usual tests that only show one thing....constipation. They give me enemas, that stuff to drink that tastes horrible to make your have a Bm and well...NONE OF IT EVER WORKS!!!!! The hospital then sends me home with instrustions to see my regular physician. My Regular doctor and my Gastro doctor are trying to get special permission for me to be able get the Zelnorm. I have such a severe case of the IBS with constipation that I can not have a BM unless I am on the Zelnorm. I am sad, hurting and depressed about the recall, thank goodness the Cymbalta helps with the depression part.
I am hoping that someone out there may be of some help to me. Thank you
Shona
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You sound JUST like me about a year ago. I cannot tell you how many ER visits ended with tears and frustration. They just gave me stuff to drink, which hardly ever worked anyway... it's frustrating, that I know. However, Zelnorm did not work for me...I believe it significantly hurt my gallbladder (Which i had removed) and just caused me pain. I couldn't find anything to make me get regular. I went about 11 days without a BM at my worst. Here is what worked for me. I started Acacia fiber almost 9 months ago. I worked up to 2 tsp twice a day. Because I had that soluble fiber base, I added more insoluble fiber. I eat salads, wholewheat bread, lots of fruits and veg. And, I drink 8 glasses of water a day. Now, I am not perfect now. In fact, I was having a belly ache tonight which reminded me of these boards. But, my belly rarely hurts like it used to. I have had 2 bad attacks (I do get IBS-D every now and then) within the last 6 months. My little mini belly aches are never bad enough to keep me in the house, or cause the depression. I was on Lexapro for about 6 months to help with this...I was missing tons of work and just felt miserable. I guess what worked for me was setting my mind to beating this. I had a wonderful boyfriend (now fiance) and supportive family. Although no one can understand how frustrating not going to the bathroom is, I vowed to do everthing I could. I mean, could it get worse?
I don't know if any of that actually helps, but I want you to know there is plenty of support here for you. I really feel for your pain...I was there a year ago. Now, I'm in grad school in England and get to travel all over the place...so hang in there. You CAN figure out what works for you and have a semi normal life!!
p.s. I also learned that between myself and this board, it is better than most doctors. They try, but there isn't magic drug that can work (unless they can get zelnorm back for you!)
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IBS-A
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I've had some issues since getting off the Zelnorm too. I was still having ups and downs on it, so I was far from stable. Getting off of Zelnorm sent me into withdrawals and I had more constipation and food issues than I had had in a while. On the other hand it has been a mixed blessing. I've tried soy yogurt again and found it palatable. I've added Acacia and now even when I am constipated it doesn't hurt as bad when it moves through the intestines. I was using Miralax and had totally stopped it since the Acacia seemed to be doing the trick. Now my period has hit and I'm back to being C again. So I'm doing a low dose of Miralax and Acacia each day. No matter how much water I drink it won't go to the gut it just goes down the toilet. I don't seem to use the water as it should be so the Miralax is a necessity. Some days I drink so much I should have diarrhea but I'm still C. It's a balancing act. I don't want to be on the meds but I need them to keep the gut working and it keeps me living a "normal" life with IBS. You just have to keep trying. The Docs really can't help that much. I tell mine what I'm doing and he's ok with it. He keeps me on track medically so I'm not using something that could be harmful. I know my body better than he does but he knows the medical stuff.
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Catnut IBS-C for many years, finally diagnosed in 2005. Wheat and dairy sensative.
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