Just can not get a grip on my IBS symptoms

[Silverumbrella]

And it’s making me so very low and depressed.

I have had IBS for decades.
Its been and down to over the years, some years I’ve managed to keep it at a manageable level, other times it’s been quite bad but I’ve always found a way managed to find a way to settle it or it’s just naturally settled itself.

However, around 5 years ago the symptoms started to become more and more frequent and has now reached a point where I have symptoms daily, on/off all day and even wakes me through the night. I have IBS-mixed but more prone to IBS-d and a constant bubbling, gurgling, growling gut which leaves me feeling very nauseous and with a feeling like I need the loo, on/off all day.

I know it’s a condition which never fully goes away and it’s something to manage rather than cure yourself of but I can’t even get to a place where I can manage it anymore and feel so trapped by this condition. I hardly go out anymore, have the most plain, boring (low fodmap) diet, only drink water and hardly any treats. I am afraid to travel anywhere, go out for meals, theatre trips, the cinema etc. My life has become very small and confined. It affects my relationship with DH and DC as we do very little as a family now.

I appreciate there is also a huge mental health aspect attached to the physical but it’s seems a chicken and egg thing and I can’t break the merry-go-round.

I feel that I haven’t left any stone unturned when it comes to finding relief. I have had many gastroenterology appointments which are always fruitless as my gastroenterologist seems uninterested tbh.
I have had a colonoscopy, gastroscope, pill camera endoscopy, a ct scan, various ultrasound scans and lots of different stool tests.
I exercise, avoid all known triggers, I’ve had lots and lots of CBT and therapy, I listen to gut directed hynoptherapy every day. I have tried all kinds of meds and antidepressants (these make the gut issues worse!).
I have trialled probiotics, tried kefir, live yougurt etc…….with no relief.

No one fully gets its, most people tell me it’s all in my head and I just need to get in with life (Well yeah! That’s what I’m trying to do but effing well difficult when your digestive system constantly reminds you that’s it’s there!).

Is there anything else I could do or try, I am at the point of desperation?

I am hoping someone on here may have been through this and can give me some advice or tips on something that worked for them as I’m getting more and more despondent and feel my life is over.

I'm so sorry it's so bad for you right now mine also goes through phases too and I have food allergies on top so end up with a really restricted diet when it's at its worst.
I was prescribed metclopramide for the nausea and lansoprazole for the acid reflux that comes with it which doesn't get rid completely but does ease it to a degree.
I also find sometimes I have no option but to resort to loperamide (much more than the recommended dose and yes I know this isn't good so I don't advise it I'm just sharing what works for me) to go on any major outings and take the instants with me at all times.
I have found that planning ahead, knowing where loos are at destinations, bringing own food/snacks or on the very rare occasions eating out is unavoidable planning ahead what will be safest even if it's only bread. This also gives me a kind of safety net feeling which helps me mentally (sorry that's not a great description but fibro brain fog this morning is not my friend) I also have a radar key which gives peace of mind.

Thank you Objectionhearsayspeculation, I’m sorry you suffer too. I will ask my gp with regards to the Metclopramide, as the nausea is becoming daily and not helped by the fact I’m now in perimenopause! Sadly PPIs really upset my tummy and I haven’t found an effective alternative. I must also get myself another radar key. I had one from the IBS network but lost it. It does give a little more piece of mind when out.

Have a look at this link: patientwebinars.co.uk/condition/ibs/webinars/

It goes through first line advise and also the low FODMAP diet

Thank you Celestron16, I will take a look at that. I have been following the low fodmap diet for the last 7 years.

These work for me, https://www.amazon.co.uk/gp/product/B0089B8I7E/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

I know it’s a condition which never fully goes away

Honestly that is not true, that is what they tell you because they don’t have a pill for you. I’m a clinical nutritionist and I have literally helped people reverse their IBS.

It’s 100% guaranteed to be something you are eating that is not making your body happy. Cut out all gluten and other grains, lower your fibre (goes against current guidelines but trust me, it works) by choosing low fibre vegetables and cut out the majority of sugar you’re eating. It can take 6 - 8 weeks to see an improvement.

Alternatively I’ve seen people do it in two weeks with a strict carnivore diet (no plant material at all). If you can do strict try that.

Thanks iveseenitinthemovies, I’ve never tried anything like that, I’ll check it out.
LMNT it is beyond frustrating when they tell me this, I even had a neuro-gastroenterologist tell me that I’ve just got to learn to live with it, that was after I’d explained how I’d been suffering for 25 years! I really don’t t know what she thinks I’ve been trying to do all of these years.
I do already follow a low fibre diet (having previously trialled high fibre which is a definite no go for me), I have avoided all dairy for 18 years, follow the low fodmap strictly and avoid wheat based products too, I consume virtually no sugar and avoid sweetener like the plaque. Honestly, my diet is so basic and so boring and yet I’m still suffering daily issues, I have no idea why.
I have kept a food dairy for the past 6 years but can not see much of a pattern, I could literally consume the same foods every day at the same time every day yet still experience different symptoms. I follow quite a few people on sm who eat the carnivore diet and say it’s stopped their symptoms but I just couldn’t do that, I really only consume fish, the thought of eating meat alone would make me want to give up on life tbh.

It seems you would likely benefit from speaking to a dietitian. If you are unable to get a referral via your GP, you could have a look at this directory for private ones:

www.bda.uk.com/find-a-dietitian.html

If you filter by specialism - IBS hopefully you can find one suitable hopefully

@Silverumbrella do you want to DM me your food diary - what you ate over the last week or so and I can give you some pointers?

I found relief by eating a huge range of different foods. When the 'eat 30 plants a week' recommendation came out, I wondered if I had reset my micro biome in some way? I also realised I cannot tolerate fat very well. I really feel for you, it's just the worst

I cured my IBS by doing the following.
I took imipramine - it's actually an anti-depressant but one of its side effects is to slow down your digestive system. It was like a miracle drug for me - I took it in a very low dose, in the evenings before I went to bed.
I went for acupuncture, which really helped.
On the acupuncturist's advice, I stopped drinking anything cold - all drinks and as much food as possible was hot/warm. Instead of tea or coffee I drank miso soup - very easy you can get it in sachets from the supermarket.
I went on the Atkins diet, with some added cooked vegetables.
I completely stopped eating anything raw, especially fruit. And anything spicy. And I ate very regularly - no missing meals or late meals.
The key to remember is that you are not doing this permanently, you are doing it to reset your gut and calm it down.
I also found honey bush tea really calming on my stomach.
Hope this helps.

@LMNT Thats interesting...I have been suffering also from IBSd for a few years and have tried pretty everything.(. colonoscopy says all.is ok , Dr has talked abou anti depressants.. but its not in my head !!) . Hospital said more fiber ( and what a painful and potentially embarrassing joke that turned out to be !!) because possible start of diverticulitis ( hence more fiber)
But in the last week I have gone back to pretty strict low carb .... Protein and fairly low fiber vegetables.. already ( amazingly for such a short time) a vast improvement..

Id be really interested if you could post a sample of the diet you'd recommend . And how you think carnivore diet and reverse it .. ( and is that long term or can you start to eat more things ? ) Are bread grains ( even rice?) Totally to be avoided or can you reintroduce them ? .

currently I feel like OP in that eating anything and going out is dangerous, but all medical staff I have seen just dont seem to understand that..

Op I am with you.. its so ruddy disheartening..

Seven years of low Fodmap would leave most people physically, emotionally and mentally exhausted.

Your gastroenterologist sounds satisfactory at best. When did you last see a dietician? Honestly they vary greatly but most would find you an interesting challenge, plus a perfect excuse to stray from the eatwell guide.

Omeprazole sorted my IBS out in the end.

I do think you have to bite the bullet and refuse to let it rule your life though. I became virtually housebound at one point and then decided enough was enough, I bought some self help books on anxiety (one was called fearing fear or something similar which was really helpful) and decided to get on with it.

I had to accept if I shit myself when out it would be awful but not as awful as spending the rest of my life a prisoner in my own home.

Also gentle exercise like pilates and yoga has been helpful.

Good luck op.

It is true that some antidepressants can work to ease IBS - something to do with being a muscle relaxant I think .

My DH suffered with IBS some years back with stress . He was going through a difficult time at work and prescribed anti-depressants. The IBS cleared up, he assumed because no longer feeling stress. Fast forward a few years and he took early retirement. After a few months he came off the anti-depressants, and shortly afterwards got really painful stomach cramps . He didn't connect the two and was having tests through his GP and changed his diet, to no avail. He then read something on the internet about this particular drug sometimes being used to treat IBS and realised it was the anti-depressant he had stopped taking . He now has a new dose prescribed by his GP and all IBS problems gone .

I'm sorry but I don't know the name of the actual anti-depressant.

Another thing I find helpful is eating a diet that is pretty stodgy, white bread/pasta/rice, not much fruit etc. Too much fibre sets me off.

Celestron16 I have worked with both a private and NHS dietician, they both suggested the low fodmap diet.
LMNT that would be so great, thank you. I’ll,pop something over in a minute.
BigGreen I do often wonder if my gut microbiome has basically been buggered from being on the low fodmap diet for so long, I did a comprehensive stool test earlier this year and it showed up that I have lots of unfriendly bacteria. I really need to somehow up my I take without provoking my symptoms.
Epwell I’ve taken Amitriptyline and Nortriptyline which are the same TCA antidepressants as as the imipramine but they made me feel awful, I haven’t tried the Imipramine though so may ask my gp about that. I don’t eat much raw of cold foods as they give me stomach pains. I think I do need to reduce the carbs but don’t eat much meat, eggs or dairy so it would be so tough, I’ve been seriously considering acupuncture, did you find it helpful? I will definitely try the honey bush tea also, thank you.
Laska2Meryls it’s truly disheartening isn’t it? Especially when the medical professionals really do not understand how life changing it is.
Itisyourturntowashthebath 7 years have truly taken its toll, I take no pleasure in food anymore. The last dietician was last year, she really wasn’t interested and sadly I can not afford to go privately.
I wish I could grasp that frame of mind Girliefriendlikespuppies I really do, the fear is really taking a grip.
ShinyAppleDreamingOfTheSea I wonder if it’s something I’ve not tried? I’ve taken Sertraline and Citalopram but they gave me awful diarrhoea and then tried Amitriptyline and Nortriptyline which is supposed to have the opposite effect but made me so dizzy I couldn’t drive.

This thread has come at a very opportune time for me. I'm going through a horrible IBS flare up as well. My symptoms are horrible bloating, a stomach full of wind and unsatisfactory poos (sorry, TMI). And discomfort. I just can't seem to get a handle on it. My husband reminded me that whenever I'm on holiday I'm absolutely fine, and on holiday, I don't eat a particularly healthy diet. much less fruit and veg. I think I'm going to try a much lower fibre diet consisting of lots of protein and not too much fruit and veg. Sorry other people are suffering, but glad to know I'm not alone! A glass of wine helps me too, which makes me think it's stress related in part as well. Dread the nights, pain way worse

Assume you have done the food diary? It can be helpful and can show you simple changes that might help. For me the best stuff to take is psyllium husk, available fro amazon, 1 or 2 tsp in water, most days. Experiment to find the best time of day to take it. Works best for me at 4-5pm.

itstimeforme I’m sorry you are suffering to, it’s the absolute pits isnt it? I totally understand the unsatisfactory poo comment! I definitely think there is a huge stress element also. Hopefully some of the suggestions in here will help us both.
ginghamstarfish I’ve kept a food diary for years but can’t really see a major connection, I do have my known triggers but still struggle even with these removed. I have had psyllium husk suggested to me many times but have always been so scared it’ll make things much worse. I should try it I suppose and start really small quantities.

Some great advice here, I would love to be able to eat lots of fruit and vegetables but they seem to ferment in my colon and cause terrible pain. I'm going to try and limit fruit and veg and concentrate on protein for a couple of weeks and see how I go. My only worry is that I won't get enough vitamins but I guess I could take a supplement and it's only a couple of weeks to start with!

Have you thought of signing up to Prof Tim Spector's Zoe project? You'll find all sorts of things out about your gut and how your body processes food.

ZOE—Understand how food affects your body (joinzoe.com)

@Silverumbrella have you ever had a SehCat scan for bile acid malabsorption? This is often misdiagnosed as other gastric illnesses.

If your IBS is stress related then hypnosis can help - it's a medically recommended treatment. Not listening to tapes or general hypnotherapy; stress is a mental health issue so you need someone who can stop your subconscious mind getting overwhelmed.

Of course there is stress involved in all of these gastric conditions and yes stress may aggravate it. If you have shit yourself in public then definitely so. From experience though I say that all the hypnosis and mindfulness in the world will not stop you shitting yourself if your body has something wrong with it physically. That's not to say it's not worth doing and on occasions I have used mindfulness to keep myself going until I can reach a toilet. On other occasions it hasn't worked.It took me 36 years to be diagnosed properly and I believe that was the luck of the draw with being referred to a good consultant. People though are more open about these things now so hearing other's discussions can help immensely to seek help.