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Ibs sufferers - what are you symptoms/how do you cope?

(19 Posts)
MyChocolateJacuzzi Wed 11-Jan-17 09:33:54

I've had Ibs for the last 18 years (am 43). I really hate it's unpredictable behaviour. One day I'm not too bad then can be bad for a day, week or monthsconfused
The symptoms really get me down and worry me. These are my main symptoms :-
Stomach/bowel rumblings/gurglings
Wind (lots at times especially in evenings, stops me from wanting to go out)
Sometimes loose, sometimes harder to go
Feelings of nausea/gnawing feeling
Burpy/reflux
Mild pains in various parts of digestive system(mainly stomach)
Twisted/stitch like feeling right side of bowel area
Occasional urgency (which REALLY stresses me out!)
Worse in morning (often cant face breakfast)
General uncomfortable distended feeling which I can have all day long

It's completely controlled and affected my life. My Gp isn't particularly helpful. I saw a dietician 4 years ago and went on the low fodmap diet which helped then but isn't now. Two years ago I thought I'd turned a corner as I felt so much better but have had a flare up last 6-8 months. I am a stressy/anxious person and know this doesn't help Ibs but I've had real stressful times and been OK and calm times and had flare ups!?
Of course being a worrier I am constantly on edge thinking it's fsomething bad!
How do you cope? Any tips are more than welcome as this is controlling my life.

gleegeek Wed 11-Jan-17 09:46:09

Watching as no help but you're describing my life and symptoms nearly exactly! Miserable isn't it?

MyChocolateJacuzzi Wed 11-Jan-17 11:35:59

Oh Glee it so is, you have my sympathy flowers
Do you take anything for it? Colpermin helps a bit and I've looked into probiotics but worry they may make the symptoms worse sad

empirerecordsrocked Wed 11-Jan-17 12:12:12

I have / had IBS-D. Eating a Hflc diet has completely cured it for me.

The relief is immense.

gleegeek Wed 11-Jan-17 12:15:34

I've tried colpermin/buscopan/mebeverine with no improvement at all. I've just bought pro and prebiotics to see if they make a difference. The best solution for me is to eat tiny meals little and often. A big meal is a recipe for trouble!
Empire - what is Hflc???

gleegeek Wed 11-Jan-17 12:17:35

Oh have googled! Hflc - high fat low carbon. I struggle with high fat after gall bladder problems...

gleegeek Wed 11-Jan-17 12:18:04

Not carbon - carbs!

empirerecordsrocked Wed 11-Jan-17 12:18:04

Sorry - high fat, low carb.

I did it for weight loss, the impact on ibs was an unexpected bonus. I think I react to gluten, maybe (not coeliac) and fibre. Brown bread is guaranteed to set off an attack.

Oblivia Wed 11-Jan-17 13:04:51

I have IBS-D and bile salt malabsorption syndrome. Have been plagued by numerous bouts of diarrhoea virtually every day all my life. I live on Loperamide. There are loads of foods that I am unable to eat now, its easier to just list the things I can eat, (cheese, ham, white bread, bananas, porridge, chicken, beef, peanut butter, chocolate, biscuits) This is basically all my diet consists of

MyChocolateJacuzzi Wed 11-Jan-17 13:17:44

Empire - that's something I've tried before but crave carbs so much, I need help with that. What does your usual days diet on the hflc look like if you don't mind me asking? Oblivia - are the symptoms of bile salt malabsorption the same as Ibs? Did you get tested on the NHS for that?

Oblivia Wed 11-Jan-17 15:56:04

The symptoms of bile salt malabsorption are chronic watery diarrhoea. I was told most of my life that I had "just IBS", about 5 years ago, I insisted on being referred to a gastroenterologist and had loads of tests done. I was then diagnosed with the bile salt problem and also IBS. There is some treatment but I found that it stopped my other medication being absorbed so i cannot take it. I just try to manage the best that I can and avoid certain foods. and yes, stress makes it worse

Banderchang Wed 11-Jan-17 16:11:24

I was diagnosed with bile salt acid malabsorption and IBS-D a few years ago. Tried all kinds of diets and Colestyramine medication daily. However, it was still completely dominating my life to an exhausting degree.

What has fixed it for me is intermittent fasting. My Dh started doing the 5:2 diet for weight loss, and I decided to try it as well (even though my bmi was fine). I thought it might be good to give my system a break a couple of times a week.

Now I regularly fast twice a week and only eat 500 calories on those days. For me the important part is the 24 hour fast as I'm not really looking to lose weight. So I eat dinner on, say, Tuesday night as usual and then have nothing until Weds evening and then eat my 500 Calories. Obviously I drink lots of water throughout the fasting period.

It's been transformative for me. I'd had to cut out loads of foods like pulses, coffee, chocolate, sausages, cheese, etc. Now I can eat all those things, take no medication and am fine as long as I stick with my fasting. On holiday I relax it to once a week, but return to twice if symptoms flare up.

Might be worth a try - others on the 5:2 boards here often report improved ibs with fasting and have lots of advice and support on following the 5:2 way of eating.

Banderchang Wed 11-Jan-17 16:12:42

Meant also to say that I've been eating this way for nearly 4 years (started May 2013) and it's worked consistently for all that time.

Whoremoan Wed 11-Jan-17 16:17:42

I've got another thread going on (Not just IBS) but wanted to check out here with IBS sufferers whether they think my current symptoms are IBS or something else? I'm waiting to see a consultant and the GP and have been increasingly ill for 6 weeks.

Current symptoms are: burning pain in lower left abdomen that wakes me in middle of night from deep sleep, with urgent sense of needing to go to the loo; severe pain at base and top of spine similar to when I once had meningitis; feeling extremely ill as if I had flu -but it's not stopping and is getting worse; feeling extremely nauseous all the time, especially in middle of night; loss of appetite; mouth sores and lip sores; dry, white tongue and very bitter taste in my mouth; unwanted weight loss of 10lbs now over 6 weeks; abdominal pain and spinal pain much worse after going to the loo and then for about 24 to 48 hrs afterwards; slight improvement for a while if I eat nothing; shivery icy cold but also hot sweats and racing heartbeat that wakes me from deep sleep in the night.

Does that really sound like just IBS? I got the same symptoms 2 yrs ago and was tested for everything and nothing found except high faecal calprotectin levels. Consultant said that didn't worry him, although it's a marker of inflammation. Put myself on low fodmap diet and managed the pain once the 'flare up flu like' symptoms had gone after about 3 to 4 months. Bowels settled to regular, hard and the 'normal' IBS symptoms but felt well in myself most of the time.

No change in diet, lifestyle, no anxiety, no stress - nor was there any when I first had the symptoms 2 years ago, happy, feeling strong and relaxed and then suddenly, bowels change across 2 to 3 weeks to urgently needing to go, mucous, not quite diarrhoea but more like that, then absolutely wiped out for the last few weeks, feeling dreadfully ill, as above.

I'm worried the consultant will fob me off with another IBS diagnosis but this doesn't feel like IBS. I think I've had IBS in the aftermath of whatever else I got 2 years ago but I think I'm having another round of that original illness. I've never felt more ill, expect that time 2 years ago. I'm in my mid-50s and never had any real digestive issues all my life till then and always recovered well and quickly from any illnesses. Healthy, happy lifestyle and fit and strong, usually but actually feel as if I'm practically dying at the moment, especially in the middle of the night when I'm woken by pain and nausea.

Do other people with longterm IBS recognise these symptoms as that IBS?

MyChocolateJacuzzi Wed 11-Jan-17 22:04:52

Oh poor you it really sounds like your going through it at the mo. It does sound a little more than Ibs. I've always been told that it shouldn't affect your sleep. Have you been tested for IBD? When are you seeing the consultant? Don't let him fob you off. Have you contacted the IBS Network or Core they are both very helpful. Hope you can get to see someone soonflowers

MyChocolateJacuzzi Wed 11-Jan-17 22:10:41

Banner - so do you only fast on the one day a week? I too don't need to lose weight. I do find if I go all day without food I have virtually no symptoms but they flare up when I then eat dinner and I'm bloated/windy all evening! Does this happen on the fast diet when you re-eat?

smilingthroughgrittedteeth Wed 11-Jan-17 22:10:53

I have IBS I often get woken up with stomach pains and needing to rush to the toilet. My main symptoms are bloating, cramps, feeling sick, very loose bm, wind and I get really hot when an attack is about to hit.

Mine is mostly dietary controlled, my triggers are gluten and dairy but I was prescribed omeprazol about a year ago which really helps

Banderchang Thu 12-Jan-17 08:46:34

Jacuzzi, I fast twice per week (unless it's holidays and then I just fast once). And, no, I feel fine when I eat after a fast - none of the IBS symptoms I used to get. In fact I ate lentil soup for my fast day tea yesterday (with some smoked salmon and a high protein yogurt) and I'd previously eliminated pulses as I couldn't cope with them. It's so liberating to be able to eat what you want and not have to plan how many hours later you want to go out, and whether you can risk having a coffee in case your DC want to go to the park later, etc.

Whoremoan your symptoms sound much worse than I've experienced with IBS, so it might be worth pushing for more investigation. I hope you get it sorted soon, it sounds very exhausting.

megletthesecond Thu 12-Jan-17 08:51:00

I had to totally cut out gluten for three months to see a difference. No soy sauce, salt n vinegar crisps, nothing. And it stopped 95% of the problems. I still eat carbs and can eat some fruit.

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