Irritable bowel syndrome and Amitriptyline

Hi Triker - thanks for this reply - it’s really interesting. The side effects of Amitriptyline do look pretty unpleasant. I’m sure my family member would not like losing being alert. I haven’t heard of loperamide - thanks - I’ll have a look at that. Or Symprove - I’ll check that out too. My relative is allergic to dairy which means they can’t have all the yoghurt type products.

thanks for your help! I really appreciate you taking the time to reply :) 

Hi Pikl,

thanks for sharing your experience - it is helpful - so no need to apologise! I’m sorry you’ve had to deal with this too - it’s not easy is it? My family member is so tired of struggling with it and trying lots of things - none of which seem to help. It’s so disheartening for them.  The side effects you experienced sound very unpleasant - I’m really sorry that happened to you. I never seem to have much luck with medication either - I sometimes wonder if autistic people are more sensitive t9 medication. 
Do you mind sharing what has helped you with your IBS? Don’t worry if you don’t want to share this info though - I quite understand, it’s very personal after all.

I hope you do get further improvement with your symptoms - and thank you so much for your reply - it’s really kind of you :) 

Hi Kate,

I have IBS though I don't take any medication for it, I just deal with it in my unorthodox way. I had been given amitriptyline became my face goes numb and I get pins and needles inside and around my mouth. It had no affect and so I've been put on a different variant.

Sorry I was of no help

I mentioned it to my Dad who has IBS(D) and he said he tried it years ago but found it made him too sleepy. He didn't remember if it helped or not, but he didn't want to feel dopey all day. He uses codeine and loperamide for his, and avoids fibre. He found symprove very good, which is a gut bacteria thing, but not like the yoghurts, it is designed to pass through the stomach without being damaged by acid as you have to take it on a very empty stomach. He had been having to avoid lactose and beer but then he could have them. But he has to pay for it.

Hello Kate. Good to see you hear again, I came back today.

I've got IBS and took Amitriptyline. I found it unhelpful. The side effects took their toll and I felt terrible, it made me worse. A lot worse. I had bad side effects but the IBS became severe after. It was a bad move. 

I've read before that IBS medication often don't work and make it worse. I'm inclined to agree with this, at least for me. 

Sorry I can't be of more help Kate. I hope it starts to work or you can find something else. 

Katy x.

Thanks Shardovan :) 

Hi Kate,

I was prescribed amitriptyline as a migraine preventive medication and was taking it for around a year in total. I also suffer from gastrointestinal problems and I think it did help a little (I was having a flare up at the time and had lost lots of weight) and think it definitely helped calm my anxiety, at least initially, so that I managed to gradually get back to my normal weight. 

Unfortunately it didn't really help my migraines so I decided to come off it (it also completely zombified me even at the lowest dose - I'm quite sensitive to medications - so I felt it wasn't worth spending my life half asleep!)

Has your family member tried the low FODMAP diet? I've now been referred to a dietician to see if I can identify any food triggers. Overall though, I think stress and anxiety are the biggest factors for me (as you mentioned, the gut-brain axis) and reducing these are a bit of a challenge. 

It may be worth them giving amitriptyline a try bearing in mind if they decide to stop taking it don't do what I did (advised by my GP I hasten to add!) and just come off cold turkey - I had some pretty horrible withdrawal symptoms.

Nice to know you're still around, just quiet. (to borrow a phrase from a recently departed member) I mentioned you in a thread the other day, when talking of much-missed people. But it seems I rather jumped the gun there! Hope you get sorted out with helpful information, I'm not familiar with that medication 

Hi Roy - that’s really kind of you - and much appreciated! 
There seems to be some kind of link between autism and gastro issues that I’ve never really fully understood. My family member’s consultant mentioned something called the ‘gut brain axis’. At first they thought it was Crohns but now they think not. They really need some help though as the symptoms are really difficult and affect their day to day life quite a lot. 
Anyway - this community is always a good source of advice, info & understanding - I find that with so many things  that are (or might be) autism related. 

I’d definitely welcome your wife’s thoughts on this if she wouldn’t mind sharing them - thank you! 

Hi

i really appreciate that - thank you! 
Things have just been a tricky for various reasons so I’ve been trying to cut down a bit on online things (not very successfully really!). I’ve been checking in on here relatively often but just not saying much. Feeling a bit quiet and preoccupied with various things. 
Happy Monday to you too

Hi, nice to hear from you. I don’t have any answers but my wife was a gastro nurse specialist for 15 years, she’s now a District Nurse, I won’t see her till tonight, she suffers from the same complaint, I will ask her opinion and get back to you.

Hello Kate.

I have nothing useful to say regarding your question, but just felt compelled to say hi because I have perceived your absence from these pages for a while.  I, for one, missed your contributions.  Lovely to see your name pop up.  That's all.  Happy Monday to you.