Would you take this medicine if it had this (possible) long term health risk but could help the quality of your life right here and now?

[OhLaurie]

I will add that I fully appreciate that many people have no choice with meds, they have to take them to save their lives regardless of the risk, I do appreciate that but it doesn’t stop the fear that I genuinely feel right now.

So long story short. I have suffered from digestive issues for decades, over the last 5 years these digestive issues have become all consuming and have literally ruined mine and my family’s lives.
As a result of my unpredictable gut I only work very very part time hours which obviously impacts my finances greatly, I’d love to work more, earn ,ore and have more fun in life. Over the last 5 years I’ve become quite reclusive, I hardly ever go out for meals or socialise due to unpredictable guts. My poor dc (now teens) have never been abroad because of my dodgy tummy and general fun stuff often goes out of the window when my tummy decides to play up which is very often. My reluctance to want to do anything due to my painful and embarrassing flare ups cause issues between my dh and I and I can’t blame him tbh but no one understands just how bad my guts can actually get.

I have had endless gastro tests and all come back clear so I have a continuing diagnosis of IBS with functional dyspepsia.

Before anyone suggests, I have tried absolutely everything to ease this issue. Spent a small fortune on medication, off the shelf products, private consultations with gastros, dieticians, hypnotherapists, psychiatrists and psychotherapists etc. I exercise and do yoga. I have a cupboard full of IBS medication and book shelves for of diets, IBS books etc. I am diary and gluten free, avoid all my known triggers, follow the low fodmap diet, drink only water. I keep a food dairy etc and just can not see a link to anything. I have invested heavily in the hope of feeling better within my body but hear I am still, at 51 and struggling.

I do take imodium but in all honesty it often causes me more issues than not in the long run.

On to the actual question.

One medication which is supposedly very helpful for IBS-d sufferers is Amitriptyline or Nortriptyline. I know from my support groups that these drugs help a lot of people. However, these are anti-cholinergic drugs and have been linked to dementia. My poor mum has Alzheimer’s and I help care for her.

I suppose caring for a loved one with dementia has skewed my thoughts over this but I live in constant fear of succumbing to this wicked disease, I do not want to end up being cared for by my children in the way my mum is, the thought of ending up like this has left me in fear every day and has put me off taking the medication.

BUT I also can’t live like I am anymore, my life is so small. Most of the enjoyment people get from life is done through socialising, traveling , eating out with family and friends and not being tied to one’s home. I want to live that life but am constantly apprehensive about taking a med and it’s potential harmful side effects but which could also, just maybe, give me back my life, but am so very much out off by this potential and probably small risk. I tell myself that 10mg-20mg a day could change my life for the better but I can’t get over this fear ffs, wtf is wrong with me?

WWYD? Would you take the med, hope for the best and put any long term risks out of your mind?

I took Amitriptyline for years for migraine and it worked really well and no side effects. I think the Amitriptyline risk for dementia was if used as an anti-depressant which is a much higher dose (5-10x higher) than the low dose used for pain relief.

Just take it. You’re putting your current life on hold for fear of what may or may not happen in the future. Best of luck.

Thank you. I totally need a kick up the arse over this. I’d be telling a friend the same thing yet just struggle to do it myself.
Hopefully a 10mg dosage will be ok.

Just take it. It's a widely used drug for multiple conditions. I took it for chronic migraine but couldn't get past the sedative effects. It's also used as a sleeping pill, a pain controlling medication, and an antidepressant depending on the dose given.

You're hugely overthinking it.

I take 10mg amitriptyline daily for sciatica because I can't function properly without it. I can't live my whole life not able to move and having to get my daughter to put my socks on for me. I don't have any side effects at all.
Take it and get your life back.

I am very much overthinking it, I agree.

Hopefully if they zone me out enough I’ll stop overthinking I’m general, that is half my problem these days.

Thank you BouleDeSuif I’m just about to go to the pharmacy and pick up the Nortriptyline which has been sitting waiting for me for the last 2 months.

Oh it's nortryptiline not amy? That didn't sedate me at all.

The Nortriptyline didn’t sedate you? That’s good if that’s the case, I’ve read Nortriptyline does has fewer side effects than amitriptyline so went for that instead.

As others have already said its a lower dose than if it was for depression, so the risks of long term side effects would be much lower. I would take it.

I don't know anything about the drug, but as someone who suffers from gastro problems, on a much milder level than yours, I would totally take it. Live your life for now, enjoy your kids for now. There is no guarantee for the future anyway, of it's not dementia then something else might get you. Go and change your life for now! Good luck.

Thanks everyone. I’ve picked them up from the pharmacy and will start taking them tomorrow. I’ll just go for it and try not to give it too much thought.

Everything has supposed side effects even the stuff you've been getting off the shelf. But the good usually outways the bad. Personally I wouldn't have suffered so long, my gran took amitriptyline for years for similar problem and she's 92 and still going

What if you don’t take it and get dementia anyway? It’s possible since your mum had it that you also will regardless of anything else.
Your life sounds miserable as it is and your husband and children have had their lives badly affected too. No holidays for the kids. How utterly utterly miserable.
I would take it, what’s the point of living a long and miserable life? Better quality than quantity I’d say

Thanks Ladyj84 that is reassuring to hear that about your gran.
I know I need to change my mindset, my mum has hardly ever taken meds and yet has still ended up with a pacemaker, osteoporosis, Alzheimer’s and recently breast cancer!

I remember when I was first prescribed antidepressants reading the leaflet and nearly not taking them because of all the potential side effects and risks. But I did and they helped me enormously.

everything carries a risk. Your current stomach problems sounds like they're ruining your life and limiting the lives of others. I think it would be worth trying the meds to see if they help your life now. Rather than worrying too much about an unknown tomorrow.

good luck. I hope they help.

im all for quality not quantity where life is concerned. Take them.

You’ve all convinced me to just go for it. I’ll definitely start them tomorrow, I finish work Thursday eve until Monday so will use those few days to hopefully get settled a little with them.

No. I was offered it for IBS but I'm a total lightweight with medication and I wouldn't have been able to manage the drowsiness while it bedded in. I've just about got IBS mostly under control by eating less and eating very carefully. I still have to work part time but it's do-able.

Weighing that sort of decision up was what made me decide to take HRT.

There are associated risks. But I wasn't functioning or living my life to the best, when I was in the best situation of my life. I decided any possible future risks were worth it to enjoy my life NOW.

I'd take them without question. Low carb means I don't have any flare ups almost at all but without that, it's awful.

Are you following a keto type diet?
I would love to go low carb for a while to see if it helps my digestive problems. I have tried several times but fall off the wagon so often.
My worry would be too much weight loss as I have a fairly low bmi but have read time and time again people stating they were able to get their gut issues under control with keto/low carb.

Sort of. It's basically the LCHF Bootcamp on here. Look for BIWI, she runs them. No bread, pasta, rice, potato, grains etc. at all. Lots of fats, medium protein. Basically most of my meals are a variation on meat or eggs, fat and green things. NO frankenfood. So salmon, butter, asparagus; steak, blue cheese, spinach; tuna, mayo, celery and so on. You can get fancy but I love that kind of food. You have to stick with it and if I fall off a little, fine. If I fall off into bread, I'm in agony for a week minimum.

I've tried FODMAP plus no wheat or dairy, which sort of works. But LCHF really works. If I stick with it, zero flare ups. None. I'm assuming it's inflammation, and no sugar and grains means no inflammation.

Could you let us know how you get on Op?
I'm in a very similar situation to you and need help but I don't know where to start. Like you I've tried everything.
I was prescribed amitriptyline years ago when I was young and it didn't seem to agree at the time but looking back maybe it wasn't that or I didn't persevere enough with it.
Sending you support as I know it's hard to live with

I took it for an overactive bladder, it made me soooo sleepy I couldn't manage it, so please try it first.