My consultant has asked for me to go back on Amitriptyline. Last time I lasted less than a week. I couldn’t handle the side effects. This time thou he’s explained things a lot more thorough. And also said he thinks in 3 to 6 months he thinks I’ll have my IBS under control where I’ll be able to lead a normal life. I’m wondering would he give me false hope when he knows how much this is effecting my mental health?
I’d just like to know of others personal experiences with this drug?
I feel IBS has taken over my life and I have resigned myself to my fate. I get all the usual IBS symptoms but they seem to be more severe then to other people I know who suffer. . At the moment the nausea, fatigue, tenesmus are awful. Then you’ve got the stomach pain and the unpredictability of this illness to contend with. Plus the alternating between diarrhoea and constipation.
I really feel sorry for anyone who suffers with this god forsaken illness. I feel no one understands it and no one understands the severity of flare ups. I can’t believe I have gone from someone who was never in to somebody who now rarely goes out. Plus I have lost my job and to this day I still can’t work.
Thank you in advance
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Daz1113
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Could I ask what side effects you had previously that made you need to stop Amitriptyline in under a week?I only ask , as certain side effects may mean it would be better to try a different medication because AmyT isn't right for you.
Have you tried any other medications or are you on any and are they helping?
Have they suggested any change in diet , supplements or relaxation techniques?
Have you had any specific blood tests for gastrointestinal issues or a colonoscopy?
My personal experience with AmyT was not a positive one, it doesn't work for everyone , I wasn't given it for my IBS but to help with other pain issues and insomnia. For me , it made the pain worse and caused more insomnia rather than helping with sleep. I struggled on with it for a month hoping that the side effects would die down and it would eventually do what it does for many , it didn't. Amitriptyline does seem to be one of those medications that can be like a miracle to some and murder to others. We are all individuals, and especially when it comes to IBS there can be so many different causes , which need to be found before the best treatment can be found , something our doctors quite often forget.
It might be worthwhile asking politely , but firmly for your GP to refer you to a dietician and the pain clinic . The dietitian can often request for the GP to do more complex tests like stool analysis and blood tests that the surgery often won't do because of cost. They can also suggest that the GP tests for SIBO or trials you on probiotics. The pain clinic will take some time to get to but can recommend for GP to trial you on various pain medications , nerve relaxants and combinations but they can also send you for nerve tests. Physiotherapy for managing pain and offer NHS funded CBT therapy , acupuncture and relaxation DVDs and group meetings.
You have the right to ask for the referrals and to refuse Amitriptyline and ask to try something else instead.
I get exactly the same symptoms it as literally taken over my life I also gets loud gurgling stomach noises I am also on amitryptaline been on it for about 6 years I was put on that for my fibro not really sure if it helps with the ibs or not I was also diagnosed with epi by my gastroenterolist and now takeing creon.
I have been taking amytriptaline for about 4 months now. I sleep much better now and don't wake as often now with the pain. I still have some symptoms and probably need to increase the dose, but im currently on 20mgs. I take it at 6pm and I can stay up all evening, then get up in the morning at 6.30. I feel fine during the day. The only other side effect is a dry mouth. It is helping me to deal with my symptoms and carry on without ibs ruling my life.
I could not tolerate it. It hyped me up and made me have anxiety. The IBS I get is only constipation and silent reflux though. Hope you get some relief soon!
Good morning Daz I was diagnosed with IBS in my thirties now in my early 70's.Since then have other probs diagnosed with Coelliac and adhesions from previous surgery. I've tried Amitriptyline too. It's a oos drug for some but what I now know is it takes our bodies weeks to get used to a new drug. Your GP sounds kind si it may be worth sticking with it for a few weeks. Good luck Lally
I've been on 10mg Amitriptyline for a number of years. I take it at night just before going to bed. Not sure how much good it does the IBS but it sure helps me sleep through some of the pain that could wake me up early. When times are better I cut the tablet in half to reduce it to approximately 5mg.
I too have suffered with IBS terribly with it massively affecting my mental health and social life. I was put on Amitriptyline for preventing migraines without knowing its links to IBS. I’ve recently been trying to come off it because I’ve got high blood pressure and Amitriptyline is linked to that. Trying to come off 40mg has been awful and I’ve had terrible side effects like anxiety, being jittery and on edge, stomachaches, upset stomach etc. I think coming off them has made me realise it had actually been helping my IBS. Though it was still an issue at times, I was living more of a normal life. Since coming off it I’ve gone back to having cramps, diarrhoea and the anxiety that goes with leaving the house like that. If you have no other health issues then I’d say try it and try and get past the settling in side effects as you might find it does help.
I am on 10mg and it helps my IBS as I have urgent diarrhea. It also helps with sleep. No side effects. I hope you get some resolution, it sounds like you're suffering terribly.
When I first started AT for about a week I felt dizzy and had bouts of sickness - however I endured this and AT changed my life.
For me it helped break the cycle: IBS=Anxiety — Anxiety=IBS
Reduced anxiety completely, restored my confidence and thus improved my IBS significantly.
By the sounds of things: IMO, you must give it a try (3months minimum I’d say (but I am no doctor!!!))- there are alternatives to AT, and nortripyline is meant to have lesser side effects.
Side effects for me were: dry mouth and felt it filled my senses a little - but it was entirely worth the trade of in my personal experience.
I was given this drug but like you had terrible sudd affects which I could not put up with. I have found however and I don't know if you can get this from your chemist it's called ENTEROSGEL it is quite expensive for 10 sachets but works for me which means I can go out a bit more which is when I've got my IBS worst just before I leave home . I fully understand what you are going through and Hope you get you do get better in time. PM me anytime if you need to talk. Best wishes Keith.
All I can say is for the first 3 days I couldn't stay awake. Then it all settled. I did not believe stress could cause all these symptoms. I have been on other antidepressants but they made me feel awful. My mood improved because I felt better. Still not 100% and get constipation with it but it has helped a lot.
yes it’s a horrible complaint mate, I have had it for over 30 years now, my last flare up lasted for 18months and I have a phone call from a gastroenterologist on Friday as I had high calprotectin levels last November, I didn’t leave the house for the 18months, as the diarrhoea was very bad upto 10 times a day and I was only eating free dry from bread or mashed potato with no butter or milk, I had the fir tests and colonoscopy but they didn’t show up anything, I do know stress make it a lot worse, do you suffer from stress much? What part of the country are you from I am in Essex and can’t tolerate the tap water so I have to drink spring water, we have had a special filter fitted to our water so I can now drink it, when I smell out tap water it smells like a swimming pool, the water companies put a lot of chemicals in it to kill off the bugs but some people can’t tolerate them.
Hello, have you been tested for Bile Acid Malabsorption which causes severe diarrhoea. Initially, I was diagnosed with IBS D, took me 12 years to have the diagnosis changed to BAM. Prescribed Colesevelam, x6 a day, which has stopped the horrendous episodes of diarrhoea and can now have a social live. Hope this helps.
I tried Amitriptyline. One tablet gave me severe heart palpitations within 18 hours, but everyone is different. My GP marked it on my record as something I couldn't take so I wouldn't be offered it anymore. It depends on how severe your symptoms were when you took it and whether those symptoms are tolerable and may calm down as you get used to it. If they were intolerable, there is no point in trying again.
Your doctor isn't given you false hope. There is research around Amitriptyline and IBS. IBS pain, in particular, may be due to a lose of neurons in pain control areas of the brain, due to PTSD, extreme stress and even neglect or abuse in childhood. This loss of neurons means that normal bowel activity can be picked up by the brain as pain. Amitriptyline is meant to help regenerate those neurons in the brain, which can take 6-12 months. There can also be a miscommunication between the brain and the gut creating disordered bowel movements with IBS. Amitriptyline can be constipating, though, which may be a bonus for primarily IBS-D sufferers.
On a side note, have you tried Alflorex probiotic, which has been scientifically studied for IBS? Many people's IBS is due to a gut bacterial imbalance with bad bugs dominating giving symptoms such as pain, food intolerances and disordered bowel movements. Alflorex has been a game changer for me, helping me with pain and has made me tolerant to a wider range of foods. There is also the Nerva gut directed hypnotherapy app to consider - this works on the gut/brain axis communication mentioned above.
I have been on that for years and still have terrible IBS. I agree with how it takes over. I am totally stressed unless I know bathroom nearby. They have no idea why mine so bad and no answers either. I am taking Colestipol and it has wired the best so far. Learning balance of too lmuch or too little
Hi Daz1113,I know exactly how you feel. I also feel that ibs-d has taken me over. It's always on my mind and I'm always conscious of how my insides feel. I'm also on the edge of being nervous if not actually fully nervous when I go out for fear of what might happen and that's because it has happened a few times. Absolutely mortifying.
My lifesaver was Amitriptyline. Early last year my doctor prescribed 10mg which worked for a month and then ceased to sadly. A dry mouth is the only side effect I noticed but it was worth it. Late last year I spoke to another doctor in the practice as the original doctor wouldn't give me anything else and just said take imodium when you go out. Very helpful. I did get prescribed 25mg of amitriptyline by the second doctor and for about 6 months it's been wonderful. But very sadly it too stopped being effective. I have paid for the Nerva App and have listened to most of the course. Very relaxing at the time of listening but has made no difference to my IBS at all. I am currently on holiday and to get through it I have been taking my leftover 10mg together with the 25mg of amitriptyline making a bigger dose of 35mg. Annoyingly it's not worked as I'd wished so I also take one imodium of a morning as well. Just this morning I got caught out and dashed into a restaurant that was closed begging them to use the toilet. I really don't know what else I can do. I've been uncomfortable all day with cramps and aches. I hate this bloody IBS , it's robbed me of my confidence and stops me doing everything I want to. I'd never felt panicky with a racing heart and sweating before my IBS got this bad. I have it all the time not just flare ups. I even tried acupuncture but to no avail. If you ever find something that works for you post it on here as I'd give anything a try. Btw fodmap diet doesn't work for me either but avoiding anything greasy, dairy, fizzy or alcohol saves it being any worse. I wish you good luck and maybe you should persevere with the Amitriptyline as when it works it's brilliant. Sorry if I've gone on a bit but the frustration of living like this can really get you down at times.
Hi Februarygirl, I hope you don't mind a quick message from me. I could have written the first paragraph of your post myself, as it is my life also.I also struggle as I don't have a gallbladder which is not helpful.
I have been on 10mg of Amitriptyline since February and it has helped somewhat. I am thinking about upping the dose as I am struggling a bit at the moment.
I take a sachet of Cholestyramine every day because of the bile caused by not having a gallbladder.
Just a thought that this medication may be of help to you as your pain and loose bowels may be caused by too much bile which I am told is a laxative. I must add I am not a medical professional but have lived with IBS for the past 20yrs.
Yes it takes over your life and is always in the back of our minds.
I hope you can enjoy the rest of your holiday.
I find I will only holiday in the uk now and I only do self catering, sounds really boring I know.
Like yourself FODMAP never works for me .
Well sorry to go on a bit, but try to enjoy what you can.
Hi , I know how you both feel ,I too had gall bladder removed but never had been told to try cholestyramine thanks for tip . I’ve tried food changes , good gut flora pills , I’m surprised how many suffer .
Hi Pollyboo, thank you for your reply. I have only just come across it as I couldn’t be bothered to trawl back through all my mostly rubbish emails when I got back from my holiday. Which by the way was a cruise. So a good choice of food that I could mix and match so as to avoid anything I thought might not agree with my fussy insides. Also plenty of toilets dotted around the ship. The beauty of a cruise is that if you are having a bad day you don’t have to get off at every port if you don’t want to. I will certainly check out Cholestyramine and see if it could help me in any way. Thanks again.
Hello there. Sorry you’re suffering, as are we all, with IBS. I’ve had IBS for about thirty years. Sometimes terrible sometimes manageable depending on my stress levels. I’ve been taking amitriptyline for a number of years with no side effects. After a colonoscopy my symptoms worsened and I was alternating between D and C whereas before it had been only D. On reading an article about amitriptyline I asked my doctor to double my dosage, which she did and I also started taking mebeverine twice a day (which I realised I should have been doing anyway!) since which I’ve been so much better. Hardly ever have diarrhoea, sometimes constipated but manageable. No stomach pains and no bloating. I’m taking 20 mgs of amitriptyline a day now. I hope you’ll be able to tolerate it more this time and that it will work for you. Personally I’d rather experience a few side effects which will hopefully calm down after a while than the horrific symptoms I was having with IBS.
I have just been to a private gastroenterologist and he suggested Amitripyline 20mg. After 2 nights I am exhausted up 4/5 times with urinary problems! Felt like a zombie in morning as well. He has also put me in Constella as I have IBSc. Any thoughts from fellow sufferers? Thanks
Keep going on the amitriptiline,stick to it,maybe not such a strong dose,i only have a 10mg tablet at night,and ive never felt better I get a dizzy burst every now and then,but its better than pain and living in the toilet!
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