Any IBS sufferers out there?

[Twoweekcruise]

How where you diagnosed?
I've had a sensitive digestive system for years (18!) and have good and bad times but most days I have lots of activity within my guts:- gurgling, rumblings, sometimes a little pain after eating and most evenings I have lots of wind, bloating and discomfort. At Christmas I had a real flare up and felt bad virtually every day. It really gets me down, worries me and in all honesty has become a bit of an obsession!
GP hasn't been particularly interested on many occasions but I asked to be referred to a gastroenterologist, he agreed as I am aneamic (have very heavy periods) but he wanted to make sure.
I saw the gastroenterologist in Feb and he asked the normal red flag questions ie:- weight loss = no, passing blood= no etc. I was expecting him to then offer a colonoscopy (which I was dreading) but no, he said he was more than happy to diagnose me with anxiety and food intolerance induced IBS, he suggested antidepressants and I experimented with my diet.
I went away happy with that but keep worrying that was enough.

If you have IBS, who diagnosed you and how were you diagnosed?

Diagnosed by GP, on the basis of my symptoms and a series of blood tests for other conditions coming back negative.

Ditto the above. Manage it by avoiding trigger foods, in my case brown or wholemeal bread, wholemeal biscuits, beans and avoid caffeine. Diagnosed by ruling out everything else. You should probably have an ultrasound scan to check for anything else.

I'm going to ask for an ultrasound as my dsis had suspected oc last year, turned out to be a massive ovarian cyst caused by undiagnosed endometriosis!

Similar problems here, OP. I'm 71, and have had digestive problems for 7 or 8? years, which I blame on a very stressful few years with family ill-health and a couple of bereavements. I took up low-carb eating 2 years ago, which stopped a lot of bloating and pain at the time, and as a bonus, lost about 20 lbs in weight (much needed!) However, digestive problems seem to have worsened since then. I know I no longer tolerate carbs and sugar - they give me pain, so those are avoided.
I went to my GP last year to try to get a diagnosis of some sort, and had blood tests, stool tests, abdominal ultrasound, and finally a CT scan of upper abdomen to rule out pancreatic cancer. All came back negative, notwithstanding some cysts were found on liver and kidneys, but those are quite common in older age, and wouldn't cause all my discomfort, also, diverticuli were noticed on the transverse colon, but these shouldn't give me the discomfort I suffer. I probably should have had 'scopes done, but being a wimp I didn't go down that route. The GP has put it under the "IBS" label, but that doesn't really help, it's just a dustbin diagnosis when the cause isn't found.
I don't have diarrhoea - stools are regular, might be a bit constipated but low-carb can be the culprit for that, and have never had blood in my stools.
My discomfort ranges from behind the sternum right down to lower abdomen, especially in both flexures of the transverse colon (both "corners"). It is fairly mild in the morning, becoming worse after eating, and bad in the evening after my main meal.
I have to confess that I do eat some of the foods said to be triggers - tomatoes, coffee, wine and a tiny bit of 85% choc, but I feel that ANY food is a problem for me. Even plain water irritates my system, sometimes makes me feel a little bit nauseous.
I should have taken out shares in Holland and Barrett with the shed-load of supplements I've bought over the years, and I can't really say anything has made much difference - although fennel tea is quite soothing. Some people find Colpermin helps, but it just gives me minty poo and wee!
Good luck to all of us sufferers!

nan sorry your suffering too, it's horrible, isn't it? I hate the wording of IBS, I too see it as a dustbin diagnosis, something causes these symptoms but it's so far and wide with so many different symptoms for different folk. Anxiety definitely plays a huge factor for me and although certain foods flare me up, when I'm calmer (quite rare these days, unfortunately!) I seem to be able to eat what I want. Hopefully, one day I'll get to the bottom of it (pardon the pun!) worrying about every symptom doesn't help though, neither do unsympathetic gp's. All the best to you 😄

I was diagnosed by a gynaecologist about 6 years ago. I had an ultrasound done and could see my colon in spasms. I cut out wheat and dairy, but I had a terrible flare up recently so now am just starting with the low fodmap diet....basically eliminating possible trigger foods and reintroduce them after a few weeks. My most recent flare up was so bad I couldn't even be in an upright position. Dr seemed to think that its stress related, which would tie in to my recent marriage breakdown. I have medication but try to just use it when only needed. Its awful OP as no-one really knows the answer, its just a what works for you sort of thing. But the limited diet is also quite frustrating, some days I just really don't even want to eat....hungry is better than pain....sigh.

Another long term sufferer here, over 20 years. Diagnosed for the last 16 or so. Had so many blood tests and did have a camera back in 2003.

It rules my life. What I do or don’t do. Where I can or can’t go. What to eat or not and especially when to eat or not!

I too have good times currently in an 8 month or so bad phase. Weight yo-yos. Gluten free, nothing fizzy, limited citrus, limited cheese, limited yeast...
Acupuncture really helps. Peppermint tea. I never go anywhere without a box of Imodium and buscopan in my bag.
I’ve just got the fodmap book to look at in more detail and also I have found the book ‘take control of your IBS’ really good. It’s helped me to understand the reasons behind it all.

Doctors don’t really know what to do. I saw a dietician years ago who just told me to eat more bran. So that was pointless.

Good luck OP. If it helps you aren’t alone

Diagnosed in 1979 by a gastro - enterologist who had expected to find ulcerative colitis, but didn't. Oddly enough, after nearly forty years of problems, mostly unpredictable diarrhoea, I stopped eating gluten and haven't had a single problem since.

Sorry that your all suffering too! I've been on the low fodmap elimination stage for 5 weeks now and although not 100%, I was starting to feel a bit better but the kids Easter eggs were begging me to eat them and like an idiot I've eaten a few mini eggs over the last 2 days. BIG mistake, I've been in so much discomfort this evening and look about 8 months pregnant, argh! I just want to eat like normal people without suffering! I've got so many IBS meds, they don't do much, have loads of books ('take control of your IBS' is one of the best), I have tried so much and it's always one step forward and 100 back!!
Time do you think you may have had undiagnosed ceoliac disease?

I was told I 'only' had ibs for 10 years. Many many trips to the gps, the last time I explained I had diahorrea for every single day over 9 months and refusing to be sent away again, I was referred for a colonoscopy which showed I had Crohn's disease.
Don't be fobbed off, ask for more tests if you think there's more to it.

I've suffered from IBS for 20 years now. Nothing has been investigated, my doctor said that's what it was and every doctor I've seen about it since just goes on that diagnosis. I live on Imodium but it's not really working any more. Mine can be triggered by food and anxiety but it's really difficult to tell which foods because sometimes it's triggered by dairy, eggs, wheat etc and sometimes I'm fine with those. I've just started taking a probiotic recommended by a friend to see how that goes. It has amazing reviews. I've tried everything over the years.

Sorry. I have been tested for coeliac many moons ago and that was ruled out.

I was diagnosed with both crohns and IBS by a gastro consultant. Colonoscopy diagnosed crohns, and conversation around further symptoms led him to diagnose IBS too.

For me, Crohns = spasmodic pain and diarrhoea 30 mins after eating and particularly in the morning.

IBS = trapped wind type pain, relieved by burping, vomiting or diarrhoea.

Both are ridiculously painful, but in a different way. And I find both can be triggered by stress.

But, all my symptoms have pretty much disappeared since I went carb and sugar free. One of the best things I’ve ever done.

My understanding is that for some people your small intestines fail to digest carbs properly, causing them to ferment there. Leading to excess gases being produced. Which is associated with IBS. I think the reason it helps my crohns too is that a low carb high fat diet reduces inflammation generally. But whatever the real science is behind it, it’s working for me.

Katkin14 how hard is it to go sugar and carb free though? I’ve cut right down on carbs anyway.

I find it so hard to eat out with family and friends and always being the awkward one. How do you do that carb and sugar free too?

The carb free thing didn't work for me at all. The banting diet is quite big here where I live, so I thought I would try it to see if it helped. Most people do it really for weight loss, but I just tried it as they say it has help many with ibs. So for the first day or so it was okay, but by day 4 I honestly was so ill that I couldn't get out of bed. I was vomiting, could not even lift my head up off the pillow. So I hauled myself up, and made a bowl of oats, and unbelievably about an hour after eating the oats, I was right as rain again. Some people seemed to think it was the cutting out sugar instead of the carbs (sugar withdrawal) , but I don't take sugar in anything anyway, so I really don't think it was that. And in those few days, I saw no difference in the ibs symtoms. So, it may work for some, but not for all. I do try to not eat a protein and carb in the same meal now, as I know it takes longer to digest, so I do have potatoes and rice but only with veg.

I think it is a trial and error thing. Lots of places here (restaurants and supermarkets) have banting products, so you could just look out for those Minime. But, yes eating out is difficult. and worst is, if I am out (I travel a bit for work) and haven't planned well and I have to buy something quick to eat.... its a bloody nightmare to grab something quick and fast.

queenio that’s a worry, 10 years being fobbed off!
short which probiotics are you taking, I want to try but worried they’ll make things worse!
katkin my problems are mainly, wind, evening bloating and lots of activity (like I’ve swallowed popcorn being cooked!). I’m going back to gp next week, I want to ask for a calprotectin test, do you know if this would show up if there was any IBD? I suffer from anxiety so wouldn’t want to go through a colonoscopy unless it was absolutely necessary!
What do you eat on low carb? I don’t have lots of actual sugary products but I have often thought carbs make me worse but when I’ve tried low carbing I just end up eating loads of meat, which I don’t like and works out really expensive. Do you follow a specific low carb diet like paleo etc?
murphys I’ve not heard of the Banting diet, will have a google.

queenio were you constantly told it was IBS by gp’s or gastroenterologists?

Twoweek do you get a product called Iberogast in the UK? Its drops that you put into water. Tastes a bit iffy at first but you get used to it. Great for the bloat and relieving of wind....

murphys I was checking that out the other day as a Youtuber was recommending it. I don’t think you can get it in the uk in the shops but I think it’s available through Amazon?!

Minime85
I find it so much easier to eat minimal carbs (fewer than 20g of carbs a day) than I did just cutting down on carbs. Eating minimal carbs ensures you go into fat burning instead of carb burning. After a while your appetite reduces significantly because carbs block your natural satiety hormones and make you crave food you don’t really need.

Eating out can be tricky. I try to eat at restaurants that are more likely to have something I can eat e.g. steak and green veg with a creamy sauce and extra butter. Puddings are impossible eating out. On Sunday we’re going to a Mexican. I’ve looked at the menu in advance and there’s a burrito bowl I can have.

*Murphys
*
It sounds like you had keto flu caused by carb withdrawal. It usually passes for most people in a week or two. Consuming extra salt seems to help. I ate some carbs and choc over Easter and my bowels still haven’t recovered. So for me I seem to need to go carb free for more than a week to see the full effects.

*Twoweekcruise
*
Sounds exactly like the IBS symptoms I used to get. Or still get if I eats carbs.

From what my consultant said a calprotectin test on its own is useful once a baseline has been established. So for me I had a colonoscopy and a calprotectin at the same time. They know that for me level x calprotectin means I have an inflamed, ulcerated ileum. Now they have that baseline they can do calprotectin on its own and if it’s lower than my initial test infer my disease is better and if it’s higher that my disease is worse. From memory my initial calprotectin level was quite low so if they had looked at that in isolation they wouldn’t have diagnosed crohns. hope that makes sense.

I eat a ketogenic diet. There are loads of ideas of what you can eat on the ketogenic forum. Generally I eat a lot of eggs, bacon, ham, salmon, steak, green veg and cheese. Today I’ve had carb free pizza leftovers for lunch and will have a pork shoulder stew with red wine, olives, anchovies and green beans in butter as a side. The ingredients can be more expensive, but when you’re fat adapted you eat less so I don’t end up spending any more on food overall. There are also lots of ideas for low cost keto on the ketogenic forum.

Love the sound of the keto diet. Do you ever get constipated on it?

Bloomed No, I’ve never been constipated on it.

katkin will you automatically loose weight low carbing? I’m a size 8 and don’t want to loose weight, just the digestive issues!

Worth asking your doctor if you can benefit from FODMAP diet which is done via a referral to dietician as knowing what foods cause those symptoms can mean you can avoid or decrease the amounts so making symptoms better or disappear. My DH benefited from this after being diagnosed with IBS. Look it up on internet - the Australian university is the best search MONASH . Good luck.

I'm taking alflorex OP. Look them up. The reviews are really good.