IBS is making my life hell

[IBSHelpMe]

IBS Is really ruining my daily life. I don’t know how to make it better any tips grateful . Always had a slightly dodgy stomach but since August last year it’s been daily.

I have been well looked after by the NHS but so far no cause has been found, we have a history of Crohns in my family.

So far I have had
A colonoscopy
Endoscopy
MRI small bowel
Pelvic scan
Bloods which showed slightly raise calprotectin

I am due to have a SEHCAT scan but once that is done and ok then I will be given an IBS diagnosis.

Which scares me in itself because there is no treatment. I have so far tried probiotics, buscopan, liquid diet, cutting out food groups and nothing helps.
I am overweight and sitting at a desk daily makes it worse I think.
I don’t suffer from diarrhoea more constipation, I have a lot of wind from when I get up to go to bed, I have constant pain in lower bowel and its sore after going.

Its ok at night when in bed, I do drink coffee but that has never made a difference. If I eat its bad, if I don’t eat its bad. Could IBS really cause symptoms on an empty stomach ?

Any advice would be great I can’t see this going away

No idea if this would help but I had IBS for YEARS following dysentery in my early 20's.

Nothing helped and it was always recurring for many years. Then I went vegan (not for health reasons but due to finding out what goes on routinely in the dairy industry 😱🤢 ) almost 6 years ago now and had NOT ONE flare up since! So happy. It really has been an amazing side effect that I wasn't remotely expecting. (Being vegan also much more enjoyable than I expected! 😁)

Hope you get a solution.

OP have they checked for diverticulitis? I was misdiagnosed as having IBS with left side pain and I ended up having diverticulitis and my bowel ruptured.

I was in constant pain for years and told they could do nothing until it was too late. I ended up having to have a bowel resection to cut out the diseased bit. There is still some diverticular disease left which gives a lot of pain but I don't want a full bowel removal.

Its probably not this but maybe check to be on the safe side.

Thanks All the vegan thing is interesting I am actually giving up meal for lent so wonder if I should go the whole hog.

It's good but sad so many others know what I'm going through.

@buzzswole people keep telling me I can't do low fodmap alone it's to hard. How difficult was it?

@Angbunnyboo I actually ended up in a and e and they thought it was this colonscopy didn't see any evidence of it. Three members of my family have it so I know how painful it is x

#ah

@IBSHelpMe it's really not that hard.
It's inconvenient if you like to eat out but you soon get used to it if you're cooking at home.

I used the Monash University's app but there are also lots of lists of foods you can print out online.

As I mentioned you do need to be careful in the reintroduction phase and that's where a professional would help.

Here is what got rid of my IBS.
Keep a food diary to identify triggers for around a week.
Ruthlessly cut out all the foods that cause you pain. For me it was all raw food, raw veg and fruit (the only fruit I could eat was fresh dates and bananas). I could eat well cooked veg, mostly root veg like potatoes, carrots, sweet potatoes etc but only in moderation.

Go on the Atkins diet. Sounds odd, but it is low carb and low in fruit and veg. You don't have to do it forever, just until your symptoms calm down. So I would eat 2 boiled eggs for breakfast, for example.
Cut out tea and coffee. Replace with Miso soup.
Don't snack at all between meals, this made me feel awful.
Invest in a top quality vitamin supplement - you may be absorbing food and vitamins poorly and you need to replenish.
Cut out alcohol.
Try asking the doctor to prescribe imipramine - it's an old fashioned anti depressant and one of its side effects is to slow down the gut. It worked a treat for me, I took a very small dose and it was extraordinarily effective.
Cut out excessively fatty food.
Don't drink anything cold, just drink hot liquids.
Try acupuncture - I found it very helpful.
Honeybush tea was a life saver for me, it really calmed my system down.
Avoid spicy or peppery food.
Good luck and hope this is helpful.

@epwell this is very useful thank you!!

So far my trigger are cauliflower, baked beans, bread and pastry. But there is more I'm sure.

@buzzswole thank you I have that app now I'm going to read up a bit more before I attempt anything

I'm cutting out gluten which is helping with the wind and any bloating I guess only time will tell if this helps long term. I've been taking a digestive enzyme and bsucopan and cut down on caffeine. I guess I will see if this helps before i trying anything else!!

One week without any gluten and I would say at least 50 per cent better. Could this have really been causing my symptoms? I tested negative for celiac

Yes definitely OP. I'm shocked you've not done an elimination diet before now that's what IBS is you're INTOLERANT to things. Keep going, keep eliminating possible triggers and keep reading for hints online.

Exercise - yoga or walking

@Really123456 I know I should have tried it sooner just my consultant at the hospital doesn't think IBS is food related and she's not a big fan of low fodmap. But I just thought it's worth a try. It's clearly not just gluten. Yesterday for first time in months no pain. Today it's back :-( . Must have eaten a trigger I guess. Thanks for you help

IBSHelpMe If you're already feeling 50% better after a week of being GF but have tested negatively for celiac, I'd put money on you being Non-Celiac Gluten Sensitive. Glad you're turning a corner!

And it's really easy to gluten yourself and start feeling symptoms again - gluten is in everything! You need to be super scrupulous about checking ingredients.

Sorry have only read part of the thread so apologies if I’m repeating myself. I spent years with “IBS”. I was in agony, eating gave me diarrhoea within 3 mins, every time. I realise it’s a different symptom to you but still.

My questions are:

1. how old are you? How old when the symptoms started?
2. how are your periods?
3. have you had a CA-125 blood test?
4. any previous abdominal surgeries

I have endometriosis and adhesions on my bowel which caused all this. They were removed and it stopped completely. Forever. Now I have the opposite issue and I believe that’s also a result of adhesions.

My mum apparently developed IBS in her mid 50s. She actually had ovarian cancer and her oncologist told her later than women over 40 just do not develop new onset IBS. If you’ve had a pelvic scan then it’s very unlikely they’ve missed ovarian cancer, but could easily be endometriosis.

Gynae issues often include bowel symptoms so if you have any gynae symptoms then push for tests in that regard.

Is the bloating constant (eg never goes up and down, just gradually gets worse)

@Longwhiskers14 I think I need to read labels more thoroughly easy to miss the gluten I think

@SinkGirl that's really interesting! Had CA125 done few times all normal. My GP actually focused more on a pelvic problem at first.
It definitely strangely feels in the bowel.
The bloating comes and goes.

I'm 41 periods are around 35days apart that's usual for me. Symptoms been on and of for few years but worse in last 8 months. No abdominal surgery apart from gallbladder removal. History of fibroid but none shown in pelvic scan. No weight loss or pain at night.

When I went back for my Small intestine MRI results it did say on the report uterus was fine

Pelvic scan would look at ovaries I presume? Not sure they would give me anymore tests

Yes, the pelvic ultrasound would check your ovaries but it would not show endometriosis.

How are your periods?

My pain was definitely bowel pain. My bowel was twisted and glued back on itself.

@SinkGirl heavy last about 3 or 4 days getting further apart. But always been heavy

I have started a low fodmap diet today - and am sticking to it really strictly. So far although I am still getting pangs and the odd painful contraction I am better than before. My issues started when I went vegan. When you look at foods known to really aggravate IBS I was suddenly eating them all! Daily! Yet I have read posts on here from people who have gone vegan and it's sorted them out - so I guess it is trial and error. One thing that now instantly sends me into screaming cramps is port. Which is a bloody shame as it was my favourite drink. I feel for you - this is an awful painful affliction.

@lesleyw1953 thansk for your reply I hope the low fodmap works for you. Port is lovey but I find it gives me heartburn!