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?

That's a very low dosage, I honestly wouldn't be worried. The dosage for depression can go up to 200mg daily. The dosage you're talking about wouldn't make me sleepy, but it would some people. Id take it at night at least at first. FIW I can tolerate amitriptyline but not nortriptyline. So if the nortriptyline doesn't help or causes too many side effects it might be worth trialing amitriptyline.

If / When you start book a couple of weeks off work. It can make you feel quite ill in the second week and lots of people give up, but keep going, the side effects disappear.

Im in the middle of chemotherapy which in itself has huge health implications long term but its necessary for me

You need to weigh up the risks and make a decision

I do understand your anxiety. I have to take numerous meds because of serious health conditions and each time I am prescribed anything I go through extreme doubt and worry.
However reading about your situation it is very clear you need help now so take the medication.
I always think of this helpful saying when I am stuck weighing up pros and cons:
There is no point worrying about smoke in the distance when you have a fire right in front of you.

Can I just say I agree with the view try the medication (and good luck)!

Also apologies if you’ve read the following but can I recommend ‘Eat, nourish, glow’ by Amelia Freer

I have recently found myself in your position OP. I developed digestive problems following chemo last year and now have to consider distance from a loo, what I eat, how long I can be away from home any time I'm thinking of doing anything.
I can't even go to my daughter's for a meal as I know I will need to go to the loo when I'm there, she only has one, it's only up half a flight of stairs from the living/dining room and one of the children is an autistic teenager who wouldn't think twice about announcing that they could hear me/I left a smell in there etc.

if I could take some medication that could give me a semblance of normal life and enable me to do things I absolutely would. My view may be coloured by the fact that I probably have less than ten years of life left... but I absolutely want as many of those years as possible to be 'normal'.

I think you should take it I have been on it for something else and it did work. Living is for now and I mean you have tried everything else so what is the harm in giving it a go?

I probably wouldn’t take the medication, no.

Low sulphur diet has helped me a lot. This is likely to work for you if you have burning sensation and/or sulphurous odour to stool. Googling hydrogen sulphide SIBO will give you more info.

If it is this, a high protein/keto diet will likely make it worse, so if you try keto and your symptoms get worse, that’s also an indication.

If a keto diet has mixed results, so in some ways worse but in some ways better, consider looking into the Fast Tract diet, as it differentiates between different types of starches in carbs. So the variety of rice or potato can make a difference ( jasmine rice is fine, basmati less so for example).

I also use specialist enzymes for FODMAPs (Fodzyme, Quatrase Forte) so I don’t have to restrict my diet so drastically.

I take amitriptyline for interstitial cystitis and lupus and as a side benefit it’s completely cured my 20 years of ibs. Just take it, honestly. Its
amazing stuff. And quality of life is so important. The doses taken for pain are tiny compared to the higher doses associated with dementia etc. I take 10mg per night and find it’s just enough to control everything for me. I literally couldn’t cope without it. Do keep in mind that initially you might feel a bit sleepy first thing in the morning but that soon wears off. I have no side effects now. Make sure you take it around 1.5 hours before you actually want to sleep. Most people take it just before they get into bed which is too late and then wonder why they feel sleepy then next morning …!

Just being nosey have you been tested for ceoliacs disease ?

Thank you all, I have the meds now and will definitely start taking them when I get home from work. I don’t work Fridays so hopefully that will give me a few days grace until I go back to work on Monday.

MrsTerryPratchett I really need to start thinking about this way of eating seriously. Although I will try these meds I only want to take them for a short while and am looking for something longer term. Hopefully very low carb may help me. Although I’m intolerant to dairy and eggs so it will be a little bit trickier for me.

sashh This is one of the reasons I’ve put off taking strong meds. I’m a self employed carer, I can’t afford to take any time off work and can’t afford to feel worse than I do so it does concern me that they may make me feel worse.

Blackcats7

There is no point worrying about smoke in the distance when you have a fire right in front of you

Great way of looking at it, thank you.

Maddy70 I hope the treatment works well for you. Good luck.

DilemmaDelilah I’m so sorry you are going through all of that. Have you tried amitriptyline? Could that possibly help with your gut issues too?

I'd try low carb before I'd take a drug linked to dementia. Dementia is rampant in my family.
I'm a veggie and manage to low carb.
Good luck

I took mine in the evening a few hours before bedtime because it can make you drowsy.

Very best of luck. I took amytriptaline for a while and it did make me very sleepy but really helped with my nerve pain issue. I do hope your meds help you regain your life!
I'm still in the trenches with my diseases and the myriad meds not working so I very much hope that your meds work and your life improves

I can't believe you have tried so many things without trying amitriptyline!

Loads of people are on it, you more than likely know someone on it.

Personally it was for me, the drowsiness was extreme but I've never met anyone who reacted as badly as me. I just had it a couple of days, was obvious not to carry on but it had been worth the try.

I take amitriptyline for fibromyalgia and it's the only thing that allows my body to relax

You'll find that you're a bit out of it for the first few days but do give it a week or so to adjust

And take it approx 12 hours before you want to get up, I usually take it around 6pm

I did test positive for hydrogen SIBO last year. I have tried every diet, supplement and medication going to try to eliminate it but a year on from testing positive I’m still no better (worse actually). I’ve messed about with my diet for so many years that it’s no surprise my gut microbiome has been affected and is far from optimal.

I’ve been through dieticians (NHS and private), gastroenterologists (I am currently under a regular gastro and a neuro-gastro team at the UCLH). I’ve spent a small fortune seeing naturopaths. Nothing has helped me so far. I no longer have any money left to see anyone privately so need to tackle this on my own (the gastros aren’t particularly helpful, tell me that SIBO should be ignored as the tests are highly unreliable but offer me very little in the way of advice to actually tackle my issues).

Apart from keto, I have tried so many diets. Nothing really helps. I have always said if I ate just dust I would still have symptoms!

I take digestive enzymes every day and although they have helped somewhat I’m still nowhere near to feeling better.

I have tried the fast tract diet in the past but am willing to try anything more than twice so will look into that again, thanks.

Mathsbabe it really does put me off. Before mums diagnosis I probably wouldn’t have given it a thought and taken the med but the hell we are going through with this dementia journey is really giving me the wobbles about taking this med.

I do need to try low carbing but as someone who can not tolerate diary, eggs, beef or chicken it is going to be tough.

Have a look at yesterday's Guardian. There was something in it about a drug which would really help IBS.

Have you not at least tried the antibiotics used for SIBO after testing positive ?

It’s only 2 weeks worth and you can get them privately although they aren’t cheap.

determinedtomakethiswork that is for IBD which I (thankfully) don’t have.

Roundeartheratchriatmas yes, I’ve had two separate rounds of Rifaximin via my NHS gastro. They didn’t help so she will not prescribe any more. They are £200 per 2 week course privately, I can’t afford that.

Sorry I posted and a. Didn’t see your last post about the money situation and also didn’t realised you’d already tried them :(

I cut carbs by accident. I was recommended to cut 500 calories a day out of my diet and cut carbs, bread, potato, rice and pasta. I switched from sandwiches to homemade soup or salad. The rest I just cut out but then discovered cauliflower rice, low carb pasta and sweet potato, none of which I eat regularly.

Hydrogen sulphide SIBO is different though and the test isn’t yet available in the UK. You just have to go on your symptoms and whether reducing sulphur in your diet has helped.

I too have run the gamut of naturopaths, private GI docs and the NHS to try to get help, and have spent a fortune in the process.

The specialist digestive enzymes I mention are specifically designed to tackle FODMAPs.

I do a combination of Low FODMAP, Fast Tract and Low Sulphur, arrived at by a lot of trial and error and it does help. Not a perfect cure but night and day from were I was few years back.

It’s frustrating the test isn’t available over here. I am on a lot of sibo support groups and follow Dr Pimentel and know that the trio-smart test is available in the States, shame not here though.

Although I am very gassy sometimes I don’t have many sulphur type symptoms but could try the diet and see if I get any relief. Nothing to lose from that I suppose.