# Lomotil advice/feedback



## NANCY588 (Oct 29, 2001)

I haven't seen any mention of Lomotil lately. I've had IBS-D since 1989 (following a misdiagnosed bout of food poisoning that resulted in C-Diff). I'm currently in the midst of an eight day attack of non-stop, liquid diarrhea. I've had no solid foods for seven days - and I'm hoping this is some sort of nasty virus (stool cultures are negative and my doc doesn't think it's food poisoning). I get horrific diarrhea with my IBS - but this is something different. My internist has perscribed Lomotil (my GI is "too busy to see patients with emergecies" - can you believe THAT??)... Anyway - prior to this attack, I'd been taking Imodium daily (2-4 tabs). I haven't used Lomotil for over ten years so I'm wondering if anyone is currently using it with success - and what side effects (if any) you're experiencing. Is it any good for long term use> I've researched Lomotil on the web - but I'd rather hear it from a live person...


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## kath139 (Sep 9, 2001)

I have been prescribed Lomotil for the last 15 years. I take it as and when I need it. If I don't need to go out of the house on a particular day I give my body a rest and don't take it. It has worked wonders for me and I certainly would not be able to manage without it. If I have an appointment planned or an outing I take it in the morning and it means I don't have to worry about going to the toilet all day. I have found you can build a tolerance up to it - ie: some days I have had to take 6 tablets for my stomach to settle down. I survive on Lomotil and painkillers until something better comes along. I was desperately hoping cilansetron was going to be released this year, but who knows what is happening with that tablet now. This illness has definitely affected the quality of my life but Lomotil has allowed me to get through it.


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## peardrops (Jan 3, 2004)

I take Lomotil with great success. I don't take it on a regular basis though, just when I need to guarantee I'm not going to have a D episode! My doctor did tell me it's OK to take it daily. After having that awful c.diff I wouldn't take an anti-diarrhoea med if I thought I was having anything other than my IBS symptoms as if you have something like c.diff, the D is the body's way of purging. The only side effects I get from Lomotil are dry mouth and sometimes headaches. There's a good site for looking up meds http://www.remedyfind.com - just click onto IBS on the left of the screen.


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## mxwe (Apr 7, 2002)

I carry Lomotil with me at all times. To me it is better than Immodim for D. It does have a narcotic effect, but I don't think it is addictive. I have taken 3 to 4 without any problems.MXWE


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## kitkat17 Lady of the Loo (Jul 21, 2005)

I take Lomotil like you guys. I take it only when I need it. I am afriad if I take it everyday it will stop working. My Dr. swears it won't but how can he promise me? It is GREAT so far. Imodium quit working for me. I have no side affects from it. I take 2 when I have a flair up or need to go somewhere I don't want to poop at. I have the big D all the time. My Dr said I can take up to 6 a day but I haven't had to.


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## 13923 (Aug 9, 2005)

I've been taking lomotil for at least 15 years but only when needed for real bad days. I keep them in my desk, my car, my golf bag, etc... It works very well and have very little side effects (dry mouth, headache, excessive peeing). I probably take 1-2 per week on average but if I have something big planned I'll take one as a precautionary measure. It has proven to be a great/cheap med to help IBS-D and I've had it for probably 40 years.


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## senior (Aug 10, 2005)

Have you tried motofen- very similar to lomotil with less side effects-works much better for me than lomotil-much more expensive than lomotil and some insurances won't cover it-my gastro doctor recommended to me about two years ago and it has really helped with crampy diarrhea-I take it if I'm going anywhere that would make me nervous concerning my bowel problems-has worked tremendously for me-have tried numerous medications and strategies for years-nothing really worked until I was prescribed motofen.


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## 23219 (Aug 16, 2005)

AhHa, at last...a physician with IBS, I think I can trace mine back to before I was 10!! I, too have a life ruled by IBS-D rather than me ruling it. I use Lomotil, I divide the tablet into 4 and take 1/4 tablet pre stressor event eg. long car journey, plane trip, Crown Court appearance etc. This reduces the chance of tolerance and also reduces the side effects, headache, dry mouth. Interestingly I find that 2 hrs after taking it I get a 'call to stool' after which I can pretty much rely on it to keep me safe. Did you know that in a GI emergency scenario you can put the Lomotil tablet under the tongue and it works within minutes.......taste not so good but effect is quick. I hate being like this and like all of you I have tried almost everything available without any long term success. I am sure the main issue is one of heightened awareness of a normal physiological event ie. bowel contraction and peristalsis and a morbid fear of losing control and being caught short or tenesmus as we docs call it.I am sure that somehow we need to reverse the mindset and not allow it to control our lives but for our lives to control it.....I'm just not sure how to attain this state of mind and body. As I said earlier I have tried lots of different 'lotions and potions' but it all seems like a sticking plaster approach ie. short term.....there must be a switch in a gene somewhere on a chromosome that we can switch off and allow us to live less obsessed lives, 'cos it is an obsession, its always in the back of the mind, what should I eat if I am doing something the next day that takes me away from easy toilet access, dreading going to the theatre, cinema, out to dinner etc. etc...............there is no doubt it is a blight on our lives which those who have normal bowel control cannot conceive of, and indeed cannot understand....its a bit like trying to explain parenthood to a childless couple. This is a useful forum for at least 2 reasons, it allows us to share our misery (venting) which is cathartic and it also allows us to share our fixes......ThanksMike


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## bushja1 (Apr 23, 2003)

I have to totally agree, Mike. I have become obsessed and really believe most of my trouble is in my head but I can't stop. I've taken Lomotil for almost 10 years. Not everyday, but almost. I does help quite a bit. My problem is nearly everyday I have an episode that makes me stressed out and out of the blue I have to go. I have about a 15 minute drive to my first delivery at work. I never fails...if I'm feeling fine and haven't taken lomotil, about half way there I get the urgent need to go, even though I've had no symptoms all day to that point. Drives me nuts...I'll have to try your suggestion of letting a pill dissolve under my tongue. Thanks.


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## Wmtand (Jan 29, 2003)

This was a great post, Thank you. I have had a prescription for Lomotil since last April and have been afraid to take it due to if being a narcotic. Immodium works for me but will constipate me for days like right now. 5 days since my last bm. Almost time for a blow out and then we cycle again !!!. Does Lomotil constipate you like this ? and can you consume alcohol while taking Lomotil ? Thanks for the information. And Mike, great to hear from a Dr. with some inside information. All the best


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## bushja1 (Apr 23, 2003)

My Doctor recommended Lomotil over Imodium for the very reason you mention. He said that Imodium is too constipating and lasts too long. As far as being a narcotic I really don't think that it's a problem. I've taken lomotil for years and my Doctor has never even mentioned addiction being a problem. I understand that you would really have to take alot. As far as alcohol goes there is a warning on the bottle that it might increase the drowsiness you may get. I've drank while taking lomotil with no problems at all. Of course moderation is the key.


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## 23219 (Aug 16, 2005)

Lomotil is a combination of Atropine and Diphenoxylate (the opiate) obviously there is an interaction between alcohol and the opiate but it is a weak opiate so the reaction is probably not really noticeable. You may find that reaction times, whilst reduced with alcohol, are reduced even further by the addition of an opiate.Yes Lomotil constipates me for 24 hrs, thats with 1/4 tablet, I find I need to be careful after the 24 hrs as the 'beast awakens' and pays me back for having the temerity to control IT rather than the other way round. I cannot get on with Imodium, I find it causes a paradoxical bowel emptying about 2-3 hrs after taking it. Other remedies I have tried include Aloe Vera tabs.....useless, Kwells for kids (hyoscine).......make me sleepy and give me headache......Colpermin (peppermint oil in slow release form).....not sure about this one, I think you need to take it regularly in order for it to work, Magnesium supplementation....useless, threelac......useless, probiotic caps........useless, buscopan (mebeverine as an antispasmodic) I think it helps the spasms....etc, etc. The bottom (pardon the pun) line is that there is not a lot out there to help us.....it looks like the newer meds are to be avoided at present due to their vicious side effect profiles.Sometimes I despair, other times I thank God that its not ulcerative colitis or Crohns and just get on with it.Keep taking the tablets......whatever they are ....if they work for you think yourselves fortunate.Mike


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## peardrops (Jan 3, 2004)

Hi Mike and welcome! Great posts, good to have a Dr on board. I can so relate to your first post. I think the fear of having an IBS attack becomes implanted in our brain, gut and brain are definitely connected. Before I got IBS which is going on for 20yrs, I used to be "normal". Could go anywhere, do anything. Following Campylobacter that's when things changed.I've tried a lot of the medication you mention, imodium doesn't work for me neither, nor does Colpermin, that just went straight through me! Mebeverine does help somewhat with the spasms. I do take probiotics after getting c-diff and touch wood it hasn't returned.Do you tell your patients who are suffering from IBS that you have this also? It must be great for your patients to have a Dr who can fully empathize with them.


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## Wmtand (Jan 29, 2003)

Thanks for the info and feedback, I will get my prescription filled and give it a try. I do also us buscopan on occasion and find it does slow things down, especially the pain, but it also makes me tired. A great pill to take in the evening before bed, kills the pain and helps you sleep.


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## 14416 (Jun 21, 2005)

if you've had the prescription since last april, are you sure you will be able to fill it?i don't know the laws in canada in the us isn't it that you can fill the prescription up to one year after the doctor wrote it out for you, and after that you must get a new prescription if it is not filled?


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## andrealee (Aug 2, 2005)

Oh my GOD! So darn glad to hear a Doc on baord- welcome and keep us informed. Thank you for joining us! Tell other Docs to recomend this & other sites you find to thier patients. Helps all of us so much. Take care!


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## Wmtand (Jan 29, 2003)

Not a problem to fill the script as I put it on file at the pharmacy


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## 14416 (Jun 21, 2005)

Good







Report back with your results-Grant


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