I have been suffering for nearly 4 years with 'IBS', possible celiac disease and I am in pain everyday! My bladder is now starting to hurt too! I have had soooo many tests and be referred to a gastro, with the diagnosis as 'Servere bowel dysfunction', possible celiac, as my bloods are negative, but my small bowel had slight inflammation. I have tested for SIBO (neg) and seen Functional Dr's and nutritionists, with no avail! My last resort is going on amitriptyline, as I have tried everything going! Including extremely expensive supplements. I'm tired of trying to 'fix' myself and that nothing is working. It's all I think about! Luckily the bowel habits are now not too bad, its just the inflammation pain. I feel like I have just been left to get on with things and I don't know where to turn to next 😔.
IBS hell: I have been suffering for nearly... - IBS Network
IBS hell
I would try the amitriptyline that did nothing for me but you should push for a second opinion don’t suffer alone keep going it takes time but you will get help from the right gastro x
Thank you 😊, my gastro seems to think I can manage with diet...... I'm not too sure. My other option given was to try sertraline,I will give the amitriptyline a try first. I wanted to try and go all natural, but I'm at my wits end now and in pain all the time. Appreciate your reply 🙏
amitriptyline is more to help Ibs I haven’t heard of sertraline helping as I tried that once and one pill sent me totally crazy I was tripping for two days I couldn’t even leave the house eat or drink it was awful but I know loads of people take it for anxiety so I’m sure it could help but neither did for me but it’s worth a try as I think amitriptyline helps a lot of people. What are your main symptoms?x
That's why I may ask to try amitriptyline before sertraline, it's just both we're mentioned and I said no at the time 🙈. I have another appointment in 2 weeks time and will now give in.Main symptoms are dull, sharp sometimes sore pain that doesn't seem to change no matter what I eat or drink! I do take some supplements, but they are not really helping much either. I think I need something to stop thinking about the pain all the time and keep reading up that amitriptyline may help suppress pain. I suppose I don't know until I try!
Do you have any bowel symptoms do you have IBS D or C or mixed? Has they done lots of tests to check what the pain is? Is the pain constant? Is it in a specific place? amitriptyline Is meant to help with the pain so I really hope it helps you. Do you not have any follow ups with your gastro? Could you ask to be referred for a second opinion? I had to go through a lot of gastros to get the help I needed but I have private insurance so that has helped me a lot xx
I take Amitriptyline and Sertraline and hasn't made much difference to my IBS symptoms. X
I'm sorry to hear that. 😔 May I ask what your symptoms are? The thing is I don't bloat and the pain is more so upper abdominal. X
I suffer with mixed Ibs can be constipated and have loose bowels same day. It's difficult to get treated as there is no cure. Every one is different . My gastrologist prescribe laxatives said it was constipation causing my problems but they made me very loose everyday so I stopped taking them. I also have got a enema kit but I've been to scared to use it incase I feel ill afterwards. I've just had blood tests and have to do a FIT test . When I have a flare upvit makes me feel so ill I go hot and tingly it's really frightening I have to lie down and relax.
Just a long shot, but have you tried Alflorex probiotic? It has helped me greatly with intestinal pain. Many people's IBS is due to a gut bacterial imbalance with a dominance of bad bugs oversensitising intestinal nerves. I also take Linaclotide but that is for IBS-C only. Have you also tried the Nerva gut directed hypnotherapy app?
Failing those, if you are suffering from visceral hypersensitivity, like me, amitriptyline is meant to help with the pain and also help to rebuild pain control neurons in the brain, a lack of which can make the brain pick up normal bowel activity as pain. On amitriptyline, these neurons can take 6-12 months to regenerate. The reduction in pain control neurons can come from highly stressful events, such as PTSD or even neglect or abuse in childhood. I couldn't tolerate these - however, I'd always prefer the natural route in the first instance (as in my first paragraph).
Wow, thank you for that info. So one Dr suggested the antidepressants as I had an horrific miscarriage last year (resulting in alot of blood loss and I suppose trauma) other things have happened too and I have had CBT therapy. It's just the pain 😢 I'm wondering (as my gut symptoms got worse after miscarriage) if it could be related and that I do have 'nerve' damage, that results in food sensitivies etc? It's so hard not getting a definite answer. I still stay Cleer of gluten (that is a big culprit). It's just the pain and I'm thinking I will have to give in to either amitriptyline or sertraline. Thanks for your reply and info.
Sorry to hear what you've been through. Trauma can certainly be linked with pain conditions. Also a lot of stress can mess up the microbiome in the gut. Hope you find something that works for you.
Thank you 🙏. I hope you are okay too?
I am doing good thanks. Alflorex and Linaclotide were saviours for me. There's still food that I can't eat - particularly certain vegetables, but I have a much broader diet now, which I am grateful for. Good luck.
Possible celiac? There are tests for that, why have they not tested you? Do Not go gluten free before the test as you will get a false negative reading.
Yeah, that's the problem the blood tests are fine as I steer clear of gluten the best that I can, but I had 'slight' inflammation in my small bowel that indicates possible celiac, but still no definite answer! I don't want to eat gluten and be in pain to re test my bloods. I would rather stay away from it and all roods containing it.
If it is possible celiac, then taking amitriptyline won’t solve the root cause, if I was you I would deal with that first to confirm or dismiss it. It seems to me that you might have a chance to deal with the cause ( many of us don’t) as you have been told about the inflammation, .
If you then really are at last resort try amitriptyline, in my experience it doesn’t get rid of the problem but it somehow makes it slightly easier to deal with, but be aware that it isn’t easy to get off it if you take it for a long time.
That is very true and I am very early into eliminating gluten in everything! As I know it can be hidden in things and that's why I have seen no improvement. I have read that it can take up to 6 months or more for the villi to heal 😔. I will see how I can for a couple of months and if no improvement, then I may give in.
Hello, I’m on 20mgs (2 tablets) Amitriptyline a day. I started off with 10mgs (1 tablet) but put it up as I kept getting anxious about my condition which is IBS C and BAM after I had my gall bladder out 12 years ago.
The Amitriptyline settled my stomach very quickly and I found it really helped with my anxiety. The only side effect I have is a dry mouth when I wake up in the morning but this soon goes when I’ve drunk water or tea.
Everyone is different on how they re-act to Amitriptyline but I found it really helps with IBS.
Apparently, it’s an old fashioned anti-depressant but as the dosage is so small it’s not for depression. It also helps with sleep.
My consultant gastroenterologist prescribed the Amitriptyline but a GP could also prescribe it.
Hope this helps. Take care.
Thank you, this does really help and it is nice to read a positive experience with amitriptyline, as in other forums they are quite negative. I think I may take the advice on seeing if the gluten does make a ton of difference and then if not, I will give amitriptyline a go.Thank you and I am glad that you are feeling a bit better 😊.
Have you tried the Fodmap diet? It can help although it is not a magic cure.
Oh, I've tried it all! Lol I have even done a elemental liquid diet for a few weeks. I try to stick to Low fodmaps as onion and garlic irritate me, Howe it's not sustainable long term. I also take an expensive supplement could Fixbiome, it seems to help slightly. However I do think It maybe more nerve related and gluten definitely doesn't help me. Thank you though 😊
Hello Rachyroo 123 have you had a colonoscopy? just 2 give you peace of mind and have they suggested that you have one done as I had 2 done in a month polyps removed both time or you could ask for a colon scan less invasive but still have to have prep stuff so they can get a clear bowel to check for anything else as when you got this horrid problem like us all on this sight we just want to get better and not 2 have this IBS/Diverticular Disease ( as I have both ) Then perhaps they can see if anything else is going on!!!As with all of us on this site one thing works 4 one person that don't work 4 others Well I wish you well and take care xx
Hey, thank you for your reply. I have had a colonoscopy, endoscopy (slight inflammation) and an MRI. All came back fine, which is good in a way, but still ever so frustrating 😫. If things don't improve I will consider the amitriptyline, as it is taking over my life as I'm sure it does for many other sufferers. It's just finding something to manage the pain. I do believe I have dysbosis and take a high quality supplement (not a probiotic yet, as I believe that will add fuel to the fire). I hope we all can find some relief 🙏.
I am sorry that you are going through all this as we all are on this site I just wish that there was a simple tablet or potion that we could take then we all could be OK as this problem that we all have on this site there is not!!! As there is lots about cancer ( 4 example ) but as 4 suffers like us they just don't have a clue I do wish you well with everything and take care xx
Hi there's a lot of information about various medications and probiotics.If you are sure that gluten is a problem then if you have gluten sensitivity. Not coeliac it won't be picked up in hospital labs. Even coeliacs can have a false negative result. I have had IBS all my life. Fodmap diet etc, you name it I tried it. But a different approach would be other cross reactive foods to gluten. A lot of coeliacs go dairy free and even grain free too. Reduce the inflammation. Personally rice too was a problem for me. Any food sensitively needs to be done 100% and it can take a long time, perhaps for some up to 2 years. My advice is instead of not being sure have some private testing done, take advice from a knowledgeable nutritional therapist. This isn't the route for everyone it is expensive, but at last you'll guidance and knowledgeable advice.
It beats years of ibs.
Best wishes.
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