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Nortriptyline (or Amitriptyline) has anyone taken this? Has it affected your digestive system/IBS at all?

27 replies

Afternoonsnooze · 08/05/2024 08:33

For whatever reason has anyone taken either Nortriptyline or Amitriptyline?

I need to try Nortriptyline for my ongoing gut issues (IBS-d) as I have exhausted all other meds. I have suffered with an overactive gut for decades but due to various issues and stresses in my life everything is getting worse despite tests at the hospital all coming back as normal. I have loose stool every day and my life now is very much dictated by my bowel habits. I am desperate to try something to slow down my gut activity and firm everything up.

I have tried everything advised for IBS and have had mixed results but nothing lasts and I soon go back to loose stool with a whole host of miserable digestive issues throughout each day, even imodium only holds every thing back and as soon as I stop all hell breaks loose (literally 😢)

My gastroenterologist has often offered to prescribe me Amitriptyline or Nortriptyline as she says these meds can help those with IBS-d.

It would only be a low dose (10mg) but I’m scared to try them. My mum has Alzheimer’s, which I am now terrified of getting having witnessed the horrors of this disease and upon research I see that Amitriptyline/Nortriptyline are anticholinergic drugs which have been linked to dementia (Alzheimer’s U.K. advice dementia sufferers not to take these drugs).
I know that I have to weigh up the lack of quality of life I currently have to any potential long term issues from these meds but I need to somehow get over that fear as I’m going crazy struggling with these daily bowel issues and in all honesty they have become an obsession, I hardly go out these days for fear of my guts upsetting me.

So, if you take either of these drugs, have they had any impact on your bowels at all? Ideally, I, looking for something to make me a bit constipated as I can control that easier than unpredictable loose stool/diarrhoea.

OP posts:
GG1986 · 08/05/2024 09:02

I have been taking amitriptyline since November last year and it has changed my life. I have ibs-d and have had all the tests done, colonoscopy etc and all came back normal(apart from 1 polyp), they did think it was crohns at one point after a 2/3 month flare up, I was struggling to leave the house as was having diarrhoea up to 10 times a day and lost over a stone. It took a few weeks to calm everything down and I had some mood changes, but it's all settled now. I take it at 7.30 every night and it helps me sleep and I wake up feeling fine. I would definitely recommend trying it and see how you get on.

Afternoonsnooze · 08/05/2024 10:17

GG1986 thank you, that’s really given me hope. People really don’t understand just how debilitating IBS can be.
Are you taking a low dose?

OP posts:
mondaytosunday · 08/05/2024 10:31

My DD took Amitriptyline for a month and it had no effect on her whatsoever (for migraines and didn't help). Didn't affect her digestion.

AnnaMagnani · 08/05/2024 10:44

I didn't get on with amitripyline but my best mate swears by it!

Nortriptyline causes less side effects of dry mouth, drowsiness and constipation and gets given to those who can't take amitripyline.

awkwardanduncomfortable · 08/05/2024 10:51

I tried amitryptyline with not a huge effect
I find codeine helpful as it slows everything down but hard to justify

Have you tried colesevalem? Or cholestyramine?
It's a bile acid sequestrant and I have found that very useful. You can have tests to check for bile acid malabsorption but to be honest we just tried the meds and they've been very useful.

As a side effect I am currently using wegovy to help with weight loss and that has significantly slowed my gut down!

It is absolutely debilitating and the mental strain is horrific. I have so much sympathy for you.

LovelaceBiggWither · 08/05/2024 10:55

My kid with overactive gut uses cholestyramine, amitryptiline, immodium and psyllium to manage his gut. It's the combination which works, take out any one med and all hell breaks loose.

Afternoonsnooze · 08/05/2024 11:05

awkwardanduncomfortable · 08/05/2024 10:51

I tried amitryptyline with not a huge effect
I find codeine helpful as it slows everything down but hard to justify

Have you tried colesevalem? Or cholestyramine?
It's a bile acid sequestrant and I have found that very useful. You can have tests to check for bile acid malabsorption but to be honest we just tried the meds and they've been very useful.

As a side effect I am currently using wegovy to help with weight loss and that has significantly slowed my gut down!

It is absolutely debilitating and the mental strain is horrific. I have so much sympathy for you.

Thank you, it’s draining isn’t it?
I have to go out in a minute and contemplating whether to go out feeling hungry and shaky as I have as I’ve not had breakfast yet (been a bad morning gut wise) or risk eating and needing the loo when I’m out, urgh!

I had a seCHAT scan last year which came back ok so my gastro wouldn’t prescribe me the binders sadly.

I sometimes take co-codamol but that just sends me the other way. I just can not seem to find a happy medium between loose stool/diarrhoea and constipation, it’s so frustrating as there are meds for diarrhoea and equally for constipation but nothing for people with mixed IBS.

OP posts:
Afternoonsnooze · 08/05/2024 11:07

LovelaceBiggWither you really do have to be your own health detective with gut issues, it’s all so personal to each sufferer isn’t it? Good to hear he’s found his right combo to live as normally as he can. I’m still yet to find my sweet spot, my guts like to mess me around on a daily basis. What helps one week has zero effect or worsens things the next.

OP posts:
GG1986 · 08/05/2024 11:17

Afternoonsnooze · 08/05/2024 10:17

GG1986 thank you, that’s really given me hope. People really don’t understand just how debilitating IBS can be.
Are you taking a low dose?

Yes 10mg every night. Consultant said it doesn't work for everyone, but when it does it's life changing for many and he prescribes it a lot in his clinics.

IBegYourBiggestPardon · 08/05/2024 11:19

I used to take 10mg of amitriptiline for migraines and never had a problem with it, but then it was increased to 20mg and it sent my heart haywire so I was immediately taken off it. Don't think it caused any stomach issues from what i can remember.

awkwardanduncomfortable · 08/05/2024 11:37

@Afternoonsnooze totally get that - I totally avoid eating in the mornings! Usually find 2 Imodium before bed works quite well.

If you find you flit between both D and C it might be worth as above poster said trying something alongside the Imodium like psyllium.

My diet is generally appalling because my safe foods are all beige and anything with too much fibre makes me ill for days.

I also recently did a course of CBT which whilst not curative for the IBS-D did help me with reframing some of my thought processes.

Sending you so much love. It is both nice and also horrible to hear somebody else suffers in the same way I do and 'gets it' ! X

MujeresLibres · 08/05/2024 11:53

I have Crohn's. I took it for migraines for a while but sadly it didn't work. No gut side effects, good or bad.

AmyByTheTrain · 08/05/2024 11:54

I took a low dose of nortriptyline for IBS-D for a few years. It helped a bit, but I think after a few years I felt it wasn't helping enough, so stopped.

What finally helped me a lot was switching from taking immodium reactively to proactively. I used to be in a cycle where I had an attack, would take several doses to stop it, then not take any until the next attack a few days later, and they cycle started again.

Instead, I switched to taking one tablet a day every day (or sometimes one tablet in the morning and one in the evening, depending on how thing are going). That changed my life to being nearly normal.

Afternoonsnooze · 09/05/2024 08:26

Thanks GG1986 I am very much considering taking this.

IBegYourBiggestPardon this is one of the reasons I’ve held back from taking it. My sister was on amitriptyline for 20 years and suddenly developed palpitations a couple of years ago, she too was take off it straight away.

awkwardanduncomfortable thank you. Yes, most of my diet has now become very plain and quite beige, not ideal but the healthier I eat, the worse I feel. I have had psyllium husk suggested to me before, I do need to try it, was just so worried it would exacerbate the ibs-d side of things but apparently it doesn’t?

OP posts:
Afternoonsnooze · 09/05/2024 08:30

AmyByTheTrain · 08/05/2024 11:54

I took a low dose of nortriptyline for IBS-D for a few years. It helped a bit, but I think after a few years I felt it wasn't helping enough, so stopped.

What finally helped me a lot was switching from taking immodium reactively to proactively. I used to be in a cycle where I had an attack, would take several doses to stop it, then not take any until the next attack a few days later, and they cycle started again.

Instead, I switched to taking one tablet a day every day (or sometimes one tablet in the morning and one in the evening, depending on how thing are going). That changed my life to being nearly normal.

I’ve been trying to experiement with imodium but just haven’t been able to find the exact dosage for my needs. I think because, although I am mainly ibs-d/loose I can also experience ibs-c a couple of days a month and imodium can so easily go the other way for me. Last year after taking just two of the little blue ibs relief ones I ended up constipated for 2 weeks which I’ve never had before.
I do have some liquid imodium waiting on prescription, maybe that could be more controllable?

OP posts:
LovelaceBiggWither · 09/05/2024 10:16

Yes figuring out what works is mindboggling. DS's surgeon rang me and was very unimpressed at how much immodium we were using but when I said what can I use instead, we've got it to the lowest possible dose that works, he had nothing to offer. Given a choice between sitting at home shitting himself or having a life, DS will swallow anything!

Afternoonsnooze · 09/05/2024 10:22

LovelaceBiggWither · 09/05/2024 10:16

Yes figuring out what works is mindboggling. DS's surgeon rang me and was very unimpressed at how much immodium we were using but when I said what can I use instead, we've got it to the lowest possible dose that works, he had nothing to offer. Given a choice between sitting at home shitting himself or having a life, DS will swallow anything!

Exactly, it’s all well and good them saying stuff like that but when all they have to offer is very unhelpful advice such as watch what you eat and practice relaxation (Yep, like I’ve never consider that before!), you are left to figure it all out yourself.

OP posts:
AmyByTheTrain · 09/05/2024 13:32

Afternoonsnooze · 09/05/2024 08:30

I’ve been trying to experiement with imodium but just haven’t been able to find the exact dosage for my needs. I think because, although I am mainly ibs-d/loose I can also experience ibs-c a couple of days a month and imodium can so easily go the other way for me. Last year after taking just two of the little blue ibs relief ones I ended up constipated for 2 weeks which I’ve never had before.
I do have some liquid imodium waiting on prescription, maybe that could be more controllable?

That's difficult. It has always been only D for me... I wish I had any ideas about managing D without triggering C, other than to keep trying different things and good luck.

EliflurtleAndTheInfiniteMadness · 09/05/2024 13:46

I take a very high dosage for other issues, I have IBS but constipation and it definitely makes that worse, have to take movicol with it. So if you're looking for it to slow things down it could help.

EliflurtleAndTheInfiniteMadness · 09/05/2024 14:08

Afternoonsnooze · 09/05/2024 08:30

I’ve been trying to experiement with imodium but just haven’t been able to find the exact dosage for my needs. I think because, although I am mainly ibs-d/loose I can also experience ibs-c a couple of days a month and imodium can so easily go the other way for me. Last year after taking just two of the little blue ibs relief ones I ended up constipated for 2 weeks which I’ve never had before.
I do have some liquid imodium waiting on prescription, maybe that could be more controllable?

Do those couple of days IBS C sync up with your period? I've worked out there's a link between my cycle and my IBS. Symptoms get worse during my period and around ovulation. My hormones tie into it somehow.

Reactions and results from different medications are very individual so whatever experiences others have had with nortriptyline and amitriptyline it could still be worth trying. FWIW amitriptyline works well for me (not my IBS C) but nortriptyline doesn't. Even closely related medications can work very differently for the same person.

terceira · 09/05/2024 15:56

I was on amitriptyline on two occasions, the first for about 5 years taking 100-150mg a night (but started lower) and the second for about 5 months taking 50mg (again started lower). Both times it did give me constipation and I stopped taking it the second occasion because the constipation was exacerbating another medical condition.

baklavagoddess · 09/05/2024 16:07

I've tried both and Nortriptyline is far better for me side effects wise! I'm actually on it for migraine prevention, I have ibs but can't say it's made a difference to my symptoms

Afternoonsnooze · 10/05/2024 07:49

Thank you AmyByTheTrain

EliflurtleAndTheInfiniteMadness I definitely think that my cycle is heavily involved in my gut issues. I notice that when I do suffer from a few days more on the constipation side it tends to be just after mid cycle and just before, during and after my period I get more diarrhoea. And although I have suffered with gut issues for 26 years it all become so so much worse since I hit the age of 45, so perimenopause must be playing a big part too.

OP posts:
AGlinnerOfHope · 10/05/2024 08:07

I take 30mg for fibromyalgia.

I didn't realise the connection but I've stopped having the early morning rush and now need caffeine to avoid constipation.

I swear by it for fibromyalgia. I hadn't connected it with the improvement in my IBS, I'd assumed it was my special low stress lifestyle 🤣

AGlinnerOfHope · 10/05/2024 08:09

With the breakfast issue, have you tried eating just fat? Bullet proof coffee, or coffee with cream? It should give energy without creating the need for the toilet as it has no substance!

One of my DC was given peanut oil on prescription to slow his gut down.

And re dementia, I'd have thought that was with the higher doses, not a teeny dose like 10mg