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I AM HEARING FROM A NUMBER OF PEOPLE THAT LOMOTIL MAY HAVE BEEN WITHDRAWN IN THE UK. I HAVE NO FURTHER INFORMATION ON THIS YET BUT IF I DO HEAR ANYTHING MORE I WILL DEFINITELY UPDATE THIS PAGE.

28 April 2014 - latest news on Lomotil in the UK, from Sandra:

"I have been waiting for Lomotil (co-phenetrope) to become available for over a year. My doctor gave me a prescription to keep so that I could keep trying different pharmicists. I finally got the tablets last week (hurray!) and they are now in all pharmacies. Please pass on the happy news to all those lovely people who are suffering from IBS."

10 April 2014 - this is the latest news on Lomotil in the UK, sent in by Bernice:

"Earlier this year, I got in touch with AMCo (Amdipharm Mercury) the supplier of Lomotil. I received an identical reply to that received by Liam (already quoted by him on this page). I later decided to send an email to MHRA (the Medicine and Health Agency Regulator) to see if I could find out any more. MHRA invited me to speak to someone by phone. The person I spoke to was very sympathetic and understanding about the ongoing situation but was unable to release any actual information due to confidentiality between MHRA and AMCo.

Soon after speaking to MHRA I decided I would send another email to AMCo. Yesterday I received a reply to this second email to AMCo and this time I got a much more satisfactory response. I will copy it below. Hopefully it will be of interest to other IBS sufferers and you will be able to spread the word.

'Further to your query, AMCo had submitted a Batch Specific Variation (BSV) to MHRA on the 21 Jan 2014 for which a Request for Information (RFI) was received back from the MHRA on 6 Feb 2014. Our Quality and Regulatory team were working towards the response for the RFI and eventually on 28 March 2014, AMCo has responded back to MHRA for an approval. We are expecting a reply from them in the next 10 days. On the receipt of the approval, AMCo would be in position to bring the product back in stock.'

This year has been very difficult for so many people who, like myself, have found that the only medication which seems to help deal with the symptoms of their IBS is Lomotil (co-phenotrope). Hopefully the long wait for this product will soon be over."

Here's an update from Cath on the Lomotil supply situation. She says: "I've just rung Amdipharm Mercury pharmaceuticals (combined amdipharm and mercury, they manufacture Lomotil). They are expecting no supply until September, but have arranged for emergency supplies available to chemists from Creo Pharmacy. I've rung my pharmacy who can then contact Creo to gain supply. The number for the pharmacist to ring is 0844 879 3188 (UK number). I'm hoping it works and I hope the information is useful. Thanks for keeping this site going."

The latest info from Cath: "My next bit of info is that that what Creo pharmacy has is an unlicensed product and costs six times what a pharmacy gets paid to dispense it (is that how it works?). So, my GP would need to prescribe for an unlicensed product and the pharmacy would need to agree to stock it. Health and money don't mix..."

Here's a message from Liam about the UK Lomotil supply situation:

"When is Lomotil coming back in stock in the UK? Since November 2012 I have had serious problems getting hold of it. I was told by Goldshield and Mercury Pharma that (originally) they would be back in stock by December 2012 and after that didn't happen I contacted them again. February 2013 was their next date, then March, April, May - you get the idea, so now here we are in January 2014 and still no restocking.

And for those of us IBS sufferers who don't feel like walking round like zombies on codeine or for those of us who (like myself) find loperamide less effective than carrot juice, life has become pretty disabling. Also we feel we are being nothing less than fobbed off or basically lied to by these 'reputable' manufacturers. All we want is to know where we stand. Thank you."

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Lomotil (diphenoxylate atropine, known as co-phenotrope in the UK) is an anti-diarrheal drug which is available on prescription. It slows the action of the bowel. Lomotil is intended to treat diarrhea symptoms. It comes in tablet or liquid form.

Lomotil side effects

The most common side effects of Lomotil are blurred vision, constipation, decreased sweating, insomnia, headache, drowsiness, dizziness, dry mouth, nausea and loss of appetite.

REVIEWS OF LOMOTIL

Review by James

I have suffered from IBS-D for 35 years and only Lomotil worked. Other drugs like Imodium were useless. I am desperate to get a new supply of Lomotil as it is no longer available in the UK.

Review by Marian

I suffer from IBS and diverticulitis and I have used Lomotil for years but then it was withdrawn in the UK. It has been a complete nightmare not feeling safe enough to go out in the mornings without taking it when the IBS is at its worse. It was a lifeline.

Anyway I found out today at my local chemist that it is back under its genetic name co-phenotrope. I have put in a prescription for it this morning and would like to let you know it is now back as so many people with IBS missed it so much.

Review by Susan

I have been taking Lomotil for IBS for over 30 years. After many different medications and doctors this has worked for me. I take half to one pill two hours before I leave the house and I am fine for six or more hours. I do not take it daily, only when needed. If I have an attack at home and still have spasms I take one, but my IBS comes from nerves and mostly when I have to go somewhere. It can make you a little light-headed so I don't see how people can take more than one pill at a time. I hope they never discontinue Lomotil. Since IBS can alternate between diarrhea and constipation, I only recommend Lomotil when needed.

Review by Eric

After suffering from uncontrollable diarrhea for years my doctor tried me on lots of different drugs. After literally not being able to leave the house, Lomotil completely changed my life. I now lead a normal life with my family. However, I've had to take loperamide for a couple of months now because of so-called manufacturer problems. Loperamide is nowhere near as good as Lomotil. And to cap it all, I'm out of my mind as Ive heard rumours that Lomotil is being withdrawn completely. Has anyone else heard this?

Review by Rositta

I started having serious diarrhea issues after my gallbladder was removed. I suffered for three years and I have been investigated from stem to stern. After one particularly bad night where I was up every 20 minutes all night long I went to ER. The doctor there gave me Lomotil. It has been life-changing as long as I take it regularly. My gastro doc has agreed to continue giving me this stuff. I know it's an opioid and can be habit forming but I don't care. I love to travel and last summer I missed out on a lot of good boat trips in Greece because I was afraid to be stuck on a boat without a toilet in the middle of the Mediterranean. Now I'm good to go anywhere.

Review by Tracy

I am a 33 year-old woman who is lactose intolerant and has IBS-D. I have been lactose intolerant for a few years now, but since I had my daughter two years ago I have had IBS-D as well. First thing in the morning as soon as I wake up, a half hour after running, and throughout the day I have been taking Lomotil. It helps but I get dizzy. I have just started taking calcium with vitamin D and the probiotic acidophilus which have helped. I stopped the Lomotil for two days and found that I only had diarrhea once the whole day.

Review by Kim

I have had IBS for 14 years now and nothing worked to help it, not diets or any meds or anything. However, I did start another medication called Lomotil and it has given me my life back. I take two pills after each attack, about 30 minutes apart, and then I am great for the rest of the day! I actually ate out and got in a car and never had an attack! It felt amazing! Just wanted to share with you.

Review by Colleen

I used this website to convince myself to try Lomotil. At the time I was suffering from severe IBS-D and I could not work at the age of 29. Now I take only two to four pills a day and my life has returned to almost normal! I am so thankful to have this medication.

Review by Melani

I have had IBS-D for 14 years, using nothing but Imodium AD which works OK. But when I finally got prescribed Lomotil I was so happy I cried. I have suffered for so long and I was housebound for six years. I couldn't work, I was afraid to go anywhere but if I absolutely had to go somewhere I would have to wear my happy pants (Depends) and I'm 32 so that made me even more miserable. When I got anxious, nervous or sad the diarrhea would come, what a way not to live!

I started taking Lomotil and now the only thing I worry about is whether they will stop making it, but I doubt it since it works so well for a lot of people. My friend asked me if I was worried about being constipated and I told her no way...I would love to be constipated, it would be like hitting the lottery. This is a wonderful drug. I am super happy now I can go wherever I want and I can actually work a job and not be scared of a D accident.

Review by Liv

I'm in my fourth year of having severe IBS. About a year ago I was put on Lomotil to control the symptoms. It worked great at first, for about two months, but then unfortunately I noticed it wasn't doing anything for me anymore, and the effect had worn off in a short space of time. Just to those who think it's brilliant and are in your first week or month of using it, best of luck to you but don't get your hopes up too much like I did.

Review by Karen

I've had IBS-D for over five years now and was prescribed Lomotil 2.5mg. I took two tablets three times a day and it totally changed my life. The fear of leaving the house had gone. Now, however, it no longer has any effect on my symptoms and I'm having to take Imodium. Lomotil is amazing until it stops working but at least it gave me five years of freedom.

Review by Jacqueline

I had colon cancer alone with five surgeries. I have been through the mill. After several surgeries I started having IBS, the bathroom trips were all day. It was a horrible way to live. I was always very nervous when going to functions, dinners, family gathering, church etc. My doctor prescribed Lomotil and it has really changed my life.

At first I was playing with it not taking it as prescribed. But, after many, many, months I finally realized that this stuff really works. I also noticed that I will not leave my house without it. My husband told me to take two in the mornings and maybe two before eating, and believe me it really works. I will never leave home without it. And, believe me I've tried many things. So, I am a living witness, and true believer that this is a life-saving drug. I am a 35 year-old banker and cancer took me out of the line of working, but now I think that I might be able to go back to work, without thinking about running to the bathroom 24/7.

I also enjoy reading all of the comments and as I read them I finally realized that I am not the only happy person on this earth that believes in this stuff called Lomotil.

Review by Paul

I had my gallbladder out in 2000 and had occasional diarrhea issues, but two years ago I went to Mexico and came down with a horrible case of food poisoning or Montezuma's revenge. Then for six months I had horrible pains and diarrhea until I got the full suite of tests that diagnosed nothing 'serious' just IBS. Just like many others have said the gastro doctor wasn't a whole lot of help after proclaiming I had IBS.

Of course IBS becomes a downward spiral as I would get panic attacks in traffic or when I was somewhere with no facilities. I got to the point where I hated even going out for dinner, and often just the stress of thinking about it caused IBS symptoms. It got so bad that someone just saying 'We should take a road trip to Vegas' would bring the IBS on full force!

Finally my PCP prescribed Lonox (generic for Lomotil) and it has been great! I have been scared to take it all the time like many people do, but when I know I will be out and about where it is inconvenient to go to the bathroom I start 48 hours ahead and I am fine. I start with two tablets with a meal and then usually take two or three a day with meals. It does cause a little constipation and bloating but that is 12,000 times better than the alternative!

Review by Graeme

I use Lomotil all the time, but taking one is a waste of time for me as it only annoys my stomach and doesn't do anything else...at least two is a better dose and makes one feel safe when out and about. In Australia, as pensioners we get it on the government system, which means I only pay $3.50 for a prescription, and I get four boxes for that with repeats.

Review by Cassidy

I have had IBS-D problems since I was 15, and I am now 23. My doctor finally prescribed Lomotil. I only take one or two tablets when I have an attack which is not relieved by Buscopan and it works within half an hour and I usually don't have to take any more for the day. I also take it before I go out for tea at a restaurant or on long car and plane journeys. It's fantastic!

Review by Ben

I have had IBS-D for about 15 years. It was awful in the beginning not understanding what was happening and having a doctor who said it was all in my head. Then I was prescribed Lomotil. Wow! My life changed. I take four 2.5mg tablets every morning and have been doing so for 11 years. I feel great! My only fear is that one day the drug company will stop producing the tablet, this does worry me somewhat. Lomotil has changed my life!

Review by Gregg

My story is much the same as Pete's story, mentioned below. After struggling with IBS-D for many years, my GI offered little help and only wanted to prescribe anti-depressants. My online research helped and I was able to change my eating and workout habits.

What intrigued me were the ancient herbal supplements like liquorice, peppermint, garlic and even calcium. However, I still had some D issues, and being in sales my job performance was waning. When I mentioned some things I had read about alternate treatments, my conservative GI simply said that 'We and the AMA don't know what to make of all that'.

It wasn't until I complained to my PCP that I was offered Lomotil. It was the magic bullet I've been searching for, but I was angry that my GI, the digestive specialist, never even offered it. My life is almost back to normal but I still deal with a bit of gas, especially when entering a stressful situation.

To avoid overuse and diminishing its effectiveness, I don't take it on weekends or days which I feel are stress-free. My fingers are crossed that Lomotil keeps on making my life normal again.

Review by Vickie

I suffered from IBS for several years. Not knowing what it was, I just thought that I had a very sensitive stomach and didn't eat hardly anything that I liked. It seemed that almost everything upset my stomach and I was in the bathroom several times a day with horrible cramps and diarrhea. When my PCP gave me Lomotil, it was like heaven in a pill. I was even able to travel again. My life has changed so much, I feel like a normal person again.

Review by Chris

I have been taking Lomotil for about a year now. I have noticed a substantial deduction in my bowel movement frequency. I take Lomotil in concert with Lortab 5mg and it seems to give the perfect amount of relief. The Lomotil stops the diarrhea, but does not work well on the cramps and abdominal pain. I would have to say that Lomotil has helped so far.

Review by Karen

Without Lomotil, I would be housebound. My life was miserable and working was miserable with this condition. Having IBS-D almost ruined my life completely, but after finding a doctor who would actually listen and do something helpful (a few said 'live with it' and take Metamucil, what a joke) I live almost a normal life now.

I have been using Lomotil every day for the last 15 years and I have had to increase the dosage as my body has become immune to it after a period of time (my doctor told me this would happen). I do not experience any adverse symptoms and I have tried Imodium, Pepto-Bismol, etc and never got any relief.

Traveling by plane is now possible for me and I am really thankful for this drug. Much of my family lives out of state and I used to dread flying to see them. Only people who suffer from this syndrome can really understand what it does to your everyday life.

Review by Jack

Following years of chronic IBS-D and virtual loss of life as a result, I've finally found the magic bullet in Lomotil. After countless negative GI investigations and crazy alternative diets at a cost of many thousands of pounds, Lomotil was standing quietly in the wings all along!

I could have bought a top of the range BMW with what I've spent (and been conned into) during my years with this awful condition! But finding this site has changed everything, and being very impressed with the reviews, I showed my GP, who until now was unaware of Lomotil, and he immediately prescribed it for me. The delightful and very fast result is a normal life again, and a big wave goodbye to Imodium, Buscopan, Colofac, Codeine and alternatives Digestrol, Esdifan etc (though I'm sure they work well for some).

It seem curious that Lomotil is not more aggressively marketed to GPs in the UK, and as the side effects are unobtrusive, it should be available OTC like Imodium.

Review by Graeme

I started with Imodium, but found it stopped working after a while. So the doctor suggested Lomotil, and it works fine for about a fortnight, and is unreliable after that. I have no real idea why this should be? Maybe one's body gets used to drugs, and for other ones that's fine, but for the necessity of such as Lomotil, and one's dependency on it, it's a shame really! I take the tablets after food - perhaps this is the criteria, perhaps I should take them before food - I've never tried that, but I will do today!

Review by Caroline

I am a 62 year-old woman who has suffered her entire life from bowel disorders and fibromyalgia. I have been using Lomotil for at least 30 years (the fibro fog prevents me from remembering exactly when it was first prescribed). It has never failed me in all these years, and is the only medicine that works for me.

I moved to Arizona about six years ago, and ran out before I found a new doctor. I was in agony for three weeks until I got an appointment with an MD. Meanwhile, in desperation, I again tried all OTCs on the market and got no relief.

This is the only medicine I trust. I have tried newer ones as they came along. Nothing worked. This is it! I will never move again without getting a new prescription filled first.

Review by Elena

Lomotil is a miracle! It has been a lifesaver for me as far as my IBS-D is concerned. It also seems to give me a wonderful, high kind of buzzy, happy, feeling. I've never seen this mentioned in any of the considerable amount of literature I've seen about it.

Review by Matthew

I am 27 years old and I was diagnosed with IBS-D in 2004 after suffering in silence for seven long and painful years. My IBS started when I was 16. I was admitted to the ER with a ruptured appendix. It had been ruptured for three days and by the time I was admitted I was completely septic. The damage to my system caused extensive internal over-scarring and the failure of my gallbladder. Now at the age of 27 and after five operations (including a bowel resection) I still suffer from extremely painful IBS-D. Lomotil is the only medication that I have been able to rely on to control my bowels!

Review by Brenda

It took a lot courage for me to trust Lomotil and follow its instructions, but it does work, and it has given me my life back. Most importantly, I try not to have a stressed lifestyle or job, as they are the major cause of diarrhea attacks! My lifestyle is volunteering because I do not have a time limit or schedule, and I help when I have good days. Lomotil is always with me, but of course I also bring back-up anti-diarrhea meds in case I have a serious attack caused by stress.

Review by Fran

As long ago as I can remember (as early as high school) I have had loose bowel problems. No-one ever addressed it until I was in my late 20s. I was given a Lomotil pill at a hockey game by a concerned spectator after she saw me going to the restroom several times. It worked and when I told my doctor he prescribed it for me.

In my later years I have been taking Imodium several times a month. I am also lactose intolerant, and so I do not consume much dairy. If I do, I take a Lactaid pill - but the day after I still have diarrhea. Mornings are mostly when I have the diarrhea, but sometimes after I eat it will hit me. I have absolutely no control - a small cramp and then all hell breaks out.

My husband and I go to Daytona and Homestead for NASCAR races, and I usually start the Imodium the day before we leave for the race and each day we are there. I always panic when we are in traffic in case I have to go to the restroom. I even have a bucket with a toilet seat attached to it in the back of our truck, in case there is no exit with a gas station to stop at. Standing in lines for the bathroom while at the race puts me in a panic attack.

After speaking with my doctor last month he gave me a script for Lomotil (generic brand) and it worked within two hours. I am asking him for a 90-day script (for my mail-in pharmacy service) so I can always keep it on hand. I am going on a trip with eight other women from my office in July and we will all travel in one vehicle for five hours to our destination. I am already panicking about it, but now with the Lomotil I think I will be OK. I do not tell people about this problem I have as it is very embarrassing.

Review by Libby

I have had IBS for the last eight years, and during four of them I have been taking Imodium, but because I was taking it for so long I have to take way too many for it to work. My doctor told me to take Lomotil, and I was very hopeful as I had heard a lot of positive things about it. But unfortunately Lomotil didn't work well for me.

Review by Carol

I am so thankful for Lomotil, it is the only thing that works for me when my IBS acts up. I have had IBS for over 20 years now and it was only about five years ago that my doctor prescribed Lomotil for me. Up until then it was awful - I was a prisoner, I could not leave my house without a change of clothes for fear I would sneeze or cough and have an accident from the awful diarrhea. Lomotil is a wonderful drug. It has given me unbelievable relief. The OTC drugs for diarrhea just did not stop it, but Lomotil does.

Review by Brenda

I have had non-stop bowel problems since 2000. I hated the stress of running back and forth to the washrooms, having accidents, and the embarrassments! I finally went to my family doctor in October 2006 and complained that the problem has to stop. It was not fair for my family and my freedom. My doctor decided to prescribe Lomotil, and although at first I thought it was just another medication, after a week I noticed a big difference.

In November 2006 I went to see my gastro specialist and he could not figure out why nobody had prescribed Lomotil five years ago, and told me that I have to take it for the rest of my life. Now it's March 2007, and it really does work, but it is not 100% perfect! Everyone gets sick now and then with the flu, and Lomotil will not stop the diarrhea during the sick process, but it does slow it down and help to control your lifestyle better just like a normal life. My doctor told me not to ever travel without my Lomotil with me. That part was interesting to hear from a doctor. I am so happy and so is my family!

Review by Christina

For three years I lived off Imodium until I built up a tolerance to it. I was desperate and asked my gastro doctor if I could survive on a liquid-only diet. That's when he prescribed Lomotil. I actually started to believe I was a normal person again, it's a miracle drug if you ask me. I only realize I'm not normal when I'm off work a day and attempt to go without Lomotil.

Review by Pete

I have been an IBS-D sufferer for the last six years. After struggling with my gastro doc and his conservative ways, I hit an all-time low. My condition caused me to become very depressed and also impacted my professional life since I'm in sales. I was starting to become reclusive.

Finally, by sheer luck, my PCP prescribed Lomotil during my annual physical and voila! I got my life back. At first I took two 2.5mg tablets four times a day but I began to experience gas and constipation. Now I've cut back to one tablet two or three times a day with meals and I'm almost like new. My wife and family have noticed how happy I am and I'm back to being me. It's been the magic bullet I've been looking for and I hope my system doesn't get immune to Lomotil's effect.

I've also been watching my diet and supplementing with fennel, licorice/peppermint tea, L-Glutamine, calcium, acidophilus and other stuff I've read is best for IBS-D. I'm sure the combination has assisted in returning my GI system to the positive side, but the significant change became immediately noticeable the day I began taking Lomotil. I'm about to send my PCP a thank-you note and a nasty note to my GI for not prescribing it.

Review by LaVerne

I have had IBS with diarrhea for eight years. I have been on Lomotil for one week and it is great! No more running to the restroom or being worried about going out somewhere and running around to find the restroom! I drink a lot of water and I do eat less. I pray this lasts!

Review by Kean

I have had IBS-D for many years, and all the tests, but nothing found. I have been using loperamide (Imodium) for years with a good success rate, but last time my doctor switched me to Lomotil 2.5mg and it is so good. I have been on it a week now and the difference is dramatic. Long may it continue!

Review by Annette

I have had alternating IBS now for the last two years after contracting food poisoning. My only savior is Lomotil. Not only does it stop the urgency but it also stops the cramps I get and I can at least live a normal life for a while and eat and drink whatever I want, I do find though that I have to drink a lot of water and end up peeing all the time, but this is a small price to pay. I really think this drug is excellent.

Review by Crystal

I have IBS-D, and my gastroenterologist prescribed Lomotil for me to take as needed. I must say that it worked very well to control the urgency and diarrhea at first, but after about two months it seemed to stop working. Now, I can take the maximum dosage and it doesn't even faze my diarrhea! But when it worked, it worked very well!

Review by Vanessa

I took Lomotil for several years and it worked fine for me at the beginning, but then I noticed that it just didn't have the lasting effect it used to have. My doctor said it's possible that it was no longer effective in my system, and she switched me to Imodium.

Review by W

I have been a sufferer of IBS-D for the last 10 years, and for the last six years I have taken two tabs of Lomotil every morning before eating anything and after going to the toilet. I promise to God it works, and until there is any concrete medication for IBS this is fine. Take plenty of water with this and eat less than what your demand is.

Do you suffer from IBS? Have you tried Lomotil? Please contact Sophie to send in your review.

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