Help IBS is ruining my life

[Dreamhols]

Post out of desperation of yet another Ibs flare up. I can’t control it, can’t identify any triggers. The flare up happens and it’s pain and huge bloating, im talking 5/10 Inches over my tummy, it’s like pure abdominal distension, like my muscles forget they are even there and my abdomen turns into a water bed.

ive been hospitalised with pain and raised inflammation markers 3 times, all 3 times they thought grumbling appendix. Stool test showed high cal protectin but negative FIT, nhs referral to gastro 2 years so paid private. Colonoscopy and samples were clear. Consultant said sometimes they reset and if not come back for endoscopy but he strongly thought ibs. Gynae issues have been ruled out also. Allergies have been ruled out. I will go back for endoscopy but where my pain isn’t consistent with where the small intestine is.

how the f does anyone manage ibs. I just can’t. Prior to colonoscopy I had a flare up that lasted 6 months, every day in pain, bloated up to 10 Inches and now I’m on day 3 again and I can’t live like this. It’s genuinely ruining my life, it impacts my work being in pain every day, my family life as I can barely play with my kids as bending and hunching over are very painful, can’t have any pressure on my tummy. I’m at the end of my tether. All the nhs guidance I’ve tried, all the buscopan and mebeverine, pepper mint oil, been prescribed lorazepam for it and citalopram and nothing not one thing works. Sometimes fasting gets rid of the pain, sometimes it makes it 10 times worse

has anyone who’s had similar found a way to deal with it?

I suffer. My sisters suffer. My daughters suffer. One daughter sounded very much like you. Had all tests etc . In and out of hospital...ambulance called ..Gas and air for pain.. given morphine.. One day she decided to cut lactose completely out of her diet.. every tiny bit of lactose.. low and behold is a hundred times better.. if she accidentally eats lactose even the tiniest bit ..my gosh her IBS hits the roof..
Worth a try?.

How old are you? My IBS started adding more things it didn't like in my mid-late 40s
Now I can't eat
Lactose
Beef
Fish
Nuts
Some types of bread
Without it kicking off.

I’m 33 and I’ve tried cutting out gluten and dairy before and noticed no discernable difference. I’m T total too, no alcohol and don’t eat processed meats or snacks and refined flour…

i feel like I’ve tried it all.

i also feel like ibs isn’t considered a real illness as it’s a functional disorder yet the impact it has on my life is so huge. So I also have these pits of worry that it’s not ibs instead it’s something really huge going undiagnosed

It's miserable. My 'only' symptoms are bloating and awful gastro pain, it's so uncomfortable.

Like Ace of pentacles, mine has added more foods that trigger it to the list now I'm in my forties. Whenever I think I've found something 'safe' it's like it says 'nope, you're not having that either, you can damn well starve'.

I'm doing fodmap elimination at the moment. It's only supposed to be for 6 weeks as it cuts out so many food groups but I genuinely don't think I can reintroduce any of them. How are people seemingly intolerant to everything supposed to actually live?

The only things I am pretty confident don't trigger me are plain cooked chicken, freshly cooked plain boiled rice and plain unseasoned freshly cooked potato.

However those same cooked starchy carbs like rice or potato are a massive massive no go once they've gone cold so no left overs for me.

I can't touch lactose, A1 protein milk based products (pretty much all dairy even lactose free) fructose, sucrose or gluten.

I'm so so so done with it, it's really not good for your mental health 😢

I (literally) feel your pain OP.

I manage to get by with a wholefood diet of my own construction - quite plain but at least I can find something on most menus if Im out.
So I dont have anything thats mass produced as Im convinced that there is some processing ingredient Im sensitive to that I havent identified yet.

But since I cant be arsed to find out what that could be I am sticking to very plain meat and two veg with no fancy sauces - not even sausages . Rice for a change and pasta as a rare event. No garlicky deliciousness though. Lots of fruit for snacking.

I was doing well until I forgot about my 'rule' and had a M&S pasta ready meal just because it was reduced. Cue days of pain and bloating. Stupid me !

I would try working out an exclusion diet for yourself once youre on an even keel. Start with plain unadulterated things like fruit and veg with only plain butter as a dressing . No gravy or sauce mixes .
No bought bread . Make your own -there's loads of recipes on youtube to try and you know exactly whats gone into it.

Its plain and boring but the result can be blessed relief from the IBS torture. Keep a full food / symptoms diary as you go so you can see what if any changes occur.

thanks all! It’s a miserable existence isn’t it. I definitely can’t eat too many veg or any pulses. The elimination diet is that just the usual one if you google it, no beef, no certain types of veg or carbs, no dairy?

How does everyone get a flare under control? I look 6 months pregnant right now. And I don’t know how to bring my symptoms under control again. I can’t have another 6 months of pain and bloating. It was so bad that I actually forgot what I looked like, I thought I always had this big floppy belly

I’m sorry your going through this op, it’s miserable.

Out of interest, how high were your calprotectin levels?

Also, do you take any gut supplements or do anything to support your gut health?

Have you tried anti histamines? Not ideal but they could suppress your bodies response to whatever it is causing the reaction

I did see in here the other day that fasting really helps - I guess that really means that food is the antagonist

maybd if you don’t want to fast try something like Huel?

This is a basic exclusion diet, formulated by Addenbrookes Hospital, so should be reliable.
You could also try a FODMAPS elimination but that is more complicated.
I wish you well and wish you luck with finding the cause.

I can't tolerate lactose or wholewheat / whole meal flour. I can only eat cheap white bread.

The problem is it's different for everyone. I did the full FODMAP and am actually ok with most of the things that trigger other people.

I really recommend FODMAP, it’s a real commitment but so worth it

I’ve never identified a specific food trigger, mine is almost always stress-related. I find if I don’t have some exercise regularly or get very stressed it all kicks off. I have found some probiotic/prebiotics helped and try to work on my gut health. In the worst times I was prescribed Spasmonal which seemed to help with some of the pain and bloating. Some gentle yoga focusing on the digestive system also helps get things moving a bit when I’ve got the rock hard bloated stomach along with stomach massage. As IBS is such a catch all diagnosis it’s difficult to say if any of this will help you specifically though as there seems to be so many different triggers and symptoms that people experience! Sorry to hear you’re suffering so badly.

It definitely is a real illness - functional does not mean imagined - it simply means that there is a fault in the way it functions rather than its structure. The gut has its own complex brain, and just as people get migraine and their brains go bonkers, the same can happen with your gut.

I suffered for decades - how I managed to bring up three children and hold down a professional job whilst going to the loo 10 times a day and being in constant pain, with acute flare-ups I do not know!

The breakthrough for me was when some bile salt absorption tests were done and a fault was found. I went on Questran and it solved the problem - I was on it for about a decade then I tailed it off very slowly and now I only get the occasional flare-up. I do not eat egg, nor drink alcohol and I avoid fatty foods.

Have they excluded bile salt malabsorption?

Probiotics have really helped me. But it needs to be a fairly high dosage one containing Bificobacterium and Lactobacillus.

I sympathise OP, I can't eat anything safely these days apart from rice cakes and white rice, chicken and peas. It's a pretty limiting diet. Peas at a push actually - I can't eat any fruit or veg without bloating massively. Beans, pulses and any bread/wheat are just not possible and like you, it's really painful and debilitating.

Stress does make mine worst. When I was on holiday recently, I did eat a more varied diet, and I was much better.

They were 360- according to the consultant anything under 1000 can be a Grey area

I’ve just started using the Nerva app. It’s too soon to tell if it makes a difference but I figure 15 mins of meditation a day can’t make anything worse anyway. Worth a try?

I take a probiotic and a multi vit and additional vitamin d, makes 0 difference

Did you have a laparoscopy to check for endometriosis? Sounds like me on a flare up, I blow up like a balloon. It's on my bowel (as well as everywhere else) so is very similar.
Ignore me if you have! Really hoping for some relief for you x

My bloating is weird, it’s like my muscles all say ‘come on chaps let’s pack it in’ and they forget how to function and my belly is like this jiggly marshmallow mess. You’d think I just have a lot of excess fat in my abdomen. My body image is in the toilet as a result

Oh I know it’s very real but it feels, at least to me, maligned in terms of how it’s treated by drs or even work, like oh it’s just Ibs, it’s not as a bad as xyz.. but I’m finding it debilitating.

ive not heard of bile salt malabsorption, how did you go about getting that tested?

I'm the same, terrible IBS, the allium family are my nemesis. No onion, garlic, chives or leeks. It's very, very common with IBS - but a killer when garlic bread is your favourite food 😫

I’ve not really had an investigation into endo as I’ve conceived ok, and don’t typically have heavy or painful periods, the pain does feel very digestive to me as it’s much higher up and I get a lot of, mucous sometimes with my stool (sorry tmi) sometimes infact it is just pure mucous.

no one has ever suggested endo and I’ve been referred to gynae before because I have pcos and I’ve had a hsg and countless ultrasounds but they Didn’t think it was endo

I saw a consultant who (as well as feeling my tits - but that is a whole other story!) recognised the possibility of bile salt malabsorption and I had the relevant scan (involved radioactive injection). He put me straight onto Questran. You could ask your doc about this.

Here is an article on it: https://my.clevelandclinic.org/health/diseases/24312-bile-acid-malabsorption