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Discussion Starter · #1 ·
Hey guys! It's been quite awhile since I've posted here. Last time I was here I was talking about how Lotronex had given me my life back. It's now a couple years later and disaster has struck. Lotronex has worked amazingly for me and I've been a new person. But a few weeks ago, I had a bout of extreme constipation followed by neverending D...then I continued to pass small amounts of reddish/pink mucous (and I know I didn't eat anything red). So I called my GI immediately and within a week (yes that's how long it took my insurance to approve it) I had a CAT scan done to see if I had ischemic colitis. The CAT scan came back negative and everything is great...except i am now no longer a candidate for Lotronex. Persona non grata...dammit. I know it's for the best, but I feel like I'm being punished for being a good patient and letting the GI know I had a problem. First time it ever happened and now I feel like I'm screwed!Anyway, I've been taking immodium for 2 weeks now while waiting to see my GI...I definitely remember why I went to the GI in the first place. I can not go back to this way of life after having my life back on the Lotronex. So I saw my GI today, she gave me a Rx for Lomotil. I took one tonight and already feel loopy and have problem focusing. If you've taken this, will this wear off? I'm suppposed to call her back on Friday to tell her how I'm doing. She'll put me on Questran (?) next if the lomotil doesn't work. I really need help here. My main problem is non stop D. And extreme urgency. Anybody on either lomotil or questran that can tell me how it's worked for you? Most the info I found on lomotil was from 2002, I'd really like to hear from those on it now or who used to be on it and why they are off now.Thanks so much guys...I just really needed to vent. Kim
 

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I have taken Lomotol for a few years now. I only take it as needed. 1 pill if I am going out, 2 if I am giong to be out for several hours. I don't have any side affect that I know of. I know headaches can be one side affect. I have a scrip that I can take up to 8 a day if needed. SO far, knock on wood, they have worked 98% of the time. I have D bad too.Questran is priamrily for high cholestrol, BUT many on here are using it for IBS-D and it is working. I don;t like taking meds that I don;t have to, cholestrol is fine here, but I might try it someday maybe.Good luckKat
 

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Discussion Starter · #3 ·
thanks so much kat! My GI gave me directions to take two at night and two in the morning. But I can take 2 every 4-6 hours. I'm out everyday at work and with friends...so my "as needed" is pretty much daily. And I just applied for a new job (which is 20K more a year! and which I've been told I have in the bag) that is 98% of the time out in the field and driving (MY WORST NIGHTMARE IF I CAN'T TAKE THE LOTRONEX!) I'd basically be going to superfund sites all day long collecting soil samples, ground and surface water samples as well as collecting well water from residents that live around superfund sites. Obviously I'm freaking out that all of a sudden I can't take the lotronex and I'm on the verge of not taking the job because everything is in limbo right now. I'm leary of taking so many lomotil because I'm already feeling loopy and I need to drive a lot (and I'm obviously dealing with hazardous waste everyday). Thanks for your help and letting me vent.Kim
 

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Discussion Starter · #4 ·
and I forgot to say that these superfund sites are ususally in the boondocks and there is no bathroom there. Can i get a collective "holy ####!" from all you guys who understand what that means for me?
 

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Holy ####! I know I could not do it. If I know there is no bathroom I dont go. SOrry to scare ya but there is no way I culd take the job. I cleaned houses for 6 years now so I am in controlof the bathroom. I have some other medical problems and not working for now and I am trying to think whatelses I can do if I cannot clean again. WIth this IBS there isn't allot I can do. Hate it.Good luck to ya. The stress alone would do me in.Take careKat
 

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Discussion Starter · #7 ·
That's the problem with this job. Since it's superfund sites, you MUST have two people present for safety concerns. So, I'm screwed. So far the lomotil is making me loopy, my face is slightly numb and I'm extremely thristy! So, it could possibly be working D-wise, but if I need to pee every 20 minutes, it kind of defeats the purpose!!! Man, I hate starting over from scratch and trying to figure out what works. I just bought some caltrate and thought I'd try that too.
 

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Hi Cassandra:I live?? on lomotil as well. This is what I have to do. I will have a bout. I go take a pill. If I have another, I'll wait, cause usually I have a 3rd. All within about 1 hour. So I end up taking 2 lomotils on an average day. Sometimes I get a headache, mostly very dry mouth. Then I can at least go to work and function without accidents. I'm usually free until the next day and it all starts over again.I hear you on the Lotronex - it was the only thing that helped. What's Questran? I'll try anything at this point.
 

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Hey, I'd say the side-effects to Lomotil will pass as you adjust to the medicine.Have you ever thought about a low dose antidepressant like Elavil to help with the diarrhea?Elavil worked better for me than Lomotil, but you can take both together. Elavil can be very constipating (good thing for us IBS D'ers), and has been shown to be good for nerve pain.Questran could be something to look into as well. They have a pill form of it. The powder was absolutely disgusting, and I hated having to mix it up and drink large amounts of liquids with it. I just seem to be better off not putting too much of anything into my stomach at one time, and when you have a medicine that has to be mixed with water, it just makes me uncomfortable sometimes.
 

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Kim,I totally agree that you were punished for being a good patient. Unless your doctor isn't telling you something, there is absolutely nothing in the FDA's Medication Guide for Lotronex to disqualify you from taking it. I don't suppose your doctor would reconsider, though?Zofran (ondansetron) is another 5-HT3 antagonist like Lotronex (alosetron). It is an antiemetic that some people on this board have used off-label, mostly Lotronex users during the time that that drug was off the market. Some people had very good results with it. I don't know if your doctor is at all open-minded about trying unorthodox treatments like this but it could be worth asking. Another downside is the price, about $40 for an 8mg pill (though most people didn't need that much daily) and some insurance companies won't cover the drug for off-label use. However, a generic version has been introduced in Canada and that same 8mg pill can be had for about $5. If you're interested, take a look at the forum Medications>Diarrhea Specific, or just use the "Search" tab. Most of the postings on Zofran should be from 2001-02. Good luck.
 

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Discussion Starter · #11 ·
I was basically told they could be sued for malpractice if she gave it to me...and the other doctors in the practice agreed that they felt "uncomfortable" with me continuing on it and that it would be "contraindicative" (? I may have heard her wrong). I am considering seeing a different GI and getting a second opinion. I know what I need to look out for, so I think I should be an ideal patient who knows what the side effect feels and looks like. Anyway, back to the lotromil, I can't really tell if it's working yet. I'll be waiting through the weekend to see if I want to continue on it. One other thing that I need to be worried about is that the warnings for this drug include insisting that you can not get overheated. Well, there are days I will need to be in a HAZMAT suit in the middle of the summer...so I will definitely be overheated. I'm thinking I'll be taking something else by the end of next week. With the dry mouth (and having to drink constantly to stay hydrated) and overheating issue, I'm going to have to try something else. I'm going to look into the Elavil and the Zofran. I have MEDCO for rx coverage, so far, I haven't had a problem with coverage. I was concerned they wouldn't cover the lotronex, but they did. My GI didn't mention those to me at all...just a ton of drugs with opium in them. And she didn't tell me that the questran came in pill form. Do you have to take the questran constantly? I'd really like something that's only once a day like the Lotronex. Damn...I really just want this trial period over and want to know exactly what I should be taking. Thanks for all of your posts. You're really helping me. Just having support out there is helping through this phase.Kim
 

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Antidepressants are COMMONLY prescribed in IBS patients... not because they're depressed (although IBS can often make someone depressed), but because they can help slow the D and help with the nerve pain.Elavil is probably the most commonly prescribed antidepressant for IBS-D patients. I found that to be the best IBS med I've taken so far, personally... and I've taken Lotronex.Questran does come in pill form. I believe the name of it is Colestid. I don't know how many pills you'd have to take, but I believe it's like 2-4. So, it's not something you'd have to be constantly taking.The Zofran isn't as constipating as Lotronex for most people. It is more expensive like JJ pointed out. If you have insurance, that shouldn't be a problem. My GI doctor wouldn't prescribe Zofran for IBS. He said it wasn't something he felt comfortable prescribing to me.. although, he did prescribe Lotronex, so it was weird.
 

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quote:But a few weeks ago, I had a bout of extreme constipation fo
Which means what exactly?
quote:Anyway, I've been taking immodium for 2 weeks
And you switched to Lomotil because that didn't work?
 

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Discussion Starter · #15 ·
My abdomen was in a lot of pain and my lower left quadrant was extremely painful. It probably took me over a half hour to finally be able to go. It doesn't sound long, but that whole time I felt like I was going to burst (and that has never happened to me before). It was just very all of a sudden. My GI is the one who rx'ed me the lomotil. She knows the immodium doesn't work for me. Basically I will be stopped up and then with no warning have explosive D. I can't live my life like that. When she said lomotil was like immodium, only stronger, I didn't want to bother, but I'll try anything right now. I've decided after about 4 days on the lomotil that I'm not going to continue it. It slows down the BMs, but it's still D. And I still have almost no warning. Kim
 

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quote:When she said lomotil was like immodium, only stronger,
Actually, Imodium is stronger than Lomotil.
 

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quote:Originally posted by flux:
quote:But a few weeks ago, I had a bout of extreme constipation fo
Which means what exactly?
quote:Anyway, I've been taking immodium for 2 weeks
And you switched to Lomotil because that didn't work?
Hi, I am new to the site but I saw your messages and have to drop in. I have had severe IBS since I went undiagnosed with gallstones for 6 months. I had my gallbladder removed and now am suffering every day. I was only suffering with "D" on the week of my menses before all this so I thought when I had my Hysterectomy I would be fine, but I was very wrong.Anyway, I have been using Lomotil for my "D" and it is the only thing that will work, also, it controls the severe spasms that I have. It does knock me out though. I cannot drive or sometimes even focus, but when you are in so much pain it doesn't bother you. I have spasms in my bowel everytime I eat or feel stress. That is a symptom of severe IBS. As is gas, bloating (which I take Zelnorm for, it works for the bloating and gas and to counter the risk of constipation with Lomotil). There are different levels of sickness with each of us. It is not known why, but that is the way it is.All of my symptoms are as follows:"D"BloatingGasFatigueLack of AppititePain when eatingSevere bowel SpasmsThere are, as you can read in my information, months that I cannot eat solid food due to the spasms and pain I have when eating solids. There are days I cannot get out of bed or others when I cannot get out of the bathroom.I work very closely with my doctor to manage this as best we can. I recommend that if you are not doing well with your treatment, find a doctor who is qualified to help you with this. There are still months that I have when there is not anything that can be done other than getting injections from the emergency room to stop the pain. I stay on a strict diet for my IBS, no fried, fatty foods, no preservatives, Kosher meat, if any, no gas causing vegies, no whole grain breads, only white or rice bread, rice pasta, corn tortillas, corn chips, no wheat, barley, oat, rye of any kind, organic vegies & sauces, and never never eat food not prepared at home.There are alot of different ways to help with the many symptoms we have but you have to be able to count on your doctor to work with you and be willing to try different things until you have some sort of plan for your day to day living. The flare ups will still happen, but at least you will have more good days then bad.
 

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I am on Lomotil as well. I delivered my first child this past March, had my gallbladder removed in April and can barely leave the house. I have no insurance now (lost my Medicaid after the baby), and never made enough to stay at work, so I stay home now, but it is sooo difficult to go to the store or to my daughter's appointments.I got in one last visit to a doc before my insurance lapsed. She gave me a script of Lomotil (I wanted Questran, but now it is too late); I find it to work fairly well, but it does tend to make you loopy, or give blurred vision. I have 2 more refills left and then will find another doc who charges less for visits and try to get Questran.I find the Lomotil helps stop the D, but the pain is still a problem somewhat. Anyway, if you wait about 15-30 minutes, the loopy feeling usually stops, HTH!!
 

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Yes it does get better in about 30 minutes. I have heard about Questran and when I spoke to my surgeon about it he said that it is only a short term solution. What that means I do not know. That is why I never persued it. I have had IBS since before my GB removal, it became severe after, so I doubt that it will help me any better than what I take now.
 
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