Nortriptyline (or Amitriptyline) for IBS, anyone take this?

[WearsBlackEatsChocolateAvoidsPeople]

I have hit rock bottom with my IBS. It's been 30 years and now I am in my early 50's it is just getting worse no matter what I do or try (I have literally tried every single thing suggested for this condition).

I already follow a low fodmap diet avoiding all my known triggers and I basically eat much the same every day. I only drink water and I exercise every day. I am under a neuro-gastro department and have has endless cbt sessions and I meditate every day but I am still experiencing daily issues. Nothing I have tried has helped.

I will freely admit that there is a huge mental health aspect tied into this and it has all become a vicious cycle with the gut-brain axis issue taking over. Additionally I am under a lot of stress caring for a parent with dementia. None of this is helping my constant gut issues which are now taking over my life. I don't eat out anywhere, never eat at friends houses and am very very careful what I eat. I actually now despise foods as it feels like the instigator to my gut issues and have developed ARFID. I go into a panic as soon as there is a mere hint of gurgling, rumbling, pain or any negative gut responses and I actually panic at the thought of using the loo even when my tummy is ok (which is quite rare these days). Years of suffering with a dodgy tum has greatly impacted my mental health.

It has been suggested by my gastroenterologist and dietitian that I try a low dose (10mg) of Nortriptyline, apparently it has less side effects than the sister drug Amitriptyline.

Now, I would take this in a shot if I thought it would help my issues. Apparently it can help break the gut/brain connection and cause some mild constipation. I am IBS-mixed but mainly d so any constipation for me would be a welcome relief tbh. The online reviews are mainly positive with many people saying it is the only drug that has helped them and it has given them back their lives. I long for my life to return to how it was, for my dh and dc's sake more than anything, they haven't been out for a meal with me in years.

However (and this is a huge however for me), one of the potential long term side effects of these drugs, being anticholinergic drugs, is dementia. My dear mum has Alzheimer's and I help care for her. It is a truly wicked disease affecting all those involved and I am terrified of it, absolutely petrified.

This fear is the only thing stopping me trying this drug.

Has anyone tried it? Did it help at all and did it cause any confusion? I really worry so much but feel it's one of my only chances left as I have tried everything else.

I take amitriptyline for IBS and it's been great, it has reduced the pain significantly. I decided to taper off them as I've been trying to reduce the amount of meds I take and I could feel the pains coming back, so I knew it was that helping the pain. The gp didn't say anything to me about dementia.

I would give it a go.

I took amitriptyline for chronic pain for a bit. It sort of worked, it would work for a bit and then my body would get used to the dose and we’d have to increase it.

I had to be really careful what time I took it because it would knock me out.

I stopped it in the end as I didn’t want to keep increasing the dose.

I didn’t like the impact it had on my mental health I only noticed after I came off it but it felt like my feelings (good and bad) were all a bit muted.

I was on it for a while but I couldn't cope with how sleepy it made me. The dose for IBS is very low.

What other medicines have you tried?

One I didn't get round to was SSRI/SNRIs - a consultant I saw for occupational health said that should be my next port of call if it flared for a long time in the future.

I was put on it a year ago for IBS, it definitely has helped. I'm on 10mcg and take it around 7.30pm, it helps you sleep also. I did have some side effects at the beginning, low mood and also broke out in acne, it did improve fairly quickly luckily. I have since been diagnosed with bile acid malabsorption after seeing the gastro team this year and they did a sehcat scan, so I am on different medication for that and haven't had Diarrhoea for a long time which has been life changing for me. Ask for this scan and further testing if they haven't already, they need to rule out everything else before saying its IBS.

Thanks everyone, I think I will start taking half a tablet to start and work my way up. If it doesn't suit at least I can stop. As long as it doesn't give me diarrhoea then I will be ok.

ineffable23 I have tried a couple of SSRI's (Citalopram and fluoxetine) but they gave me a worsening of my IBS-d. I was prescribed a SNRI (duloxetine I think) but read they are really hard to come off so that put me off tbh.

GG1986 I have had so many tests over the last 5 years. 2 x colonoscopies, a gastroscope, a pill camera endoscopy, various ultrasound scans, stool tests etc. The last test was a year ago, it was a Sechat scan for BAM but it came back as normal.

Have you been checked for food allergies/intolerance and coeliac? It's so frustrating. I would discuss low dose amitriptyline and see what the Dr says regarding your family history. Hope you can get something sorted.