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

@Calmisthemantra I have the app so will give it another visit thank you

@cutietooties peppermint tea is a life saver!

@Notlonely aw sorry to hear its been rubbish for you lately to. I hope it eases. How can something not seen in the body cause so much pain

@Notlonely I do, I have never had a problem until now I do things and quickly change my mind thinking my body can cope.

Things went downhill when I had my gallbladder out

Low fodmap helps me - and mebeverine. I take immodium if going out for a meal. I try not to get bunged up and exercise helps with that.

Mine disappears when I am taking citalopram (prescribed for other reasons). I believe amitryptiline is becoming a recognised treatment, may be worth asking to try it.

@mummymayhem18 I had my gallbladder out in 2017 things have been getting worse since then.

My consultant is great she has given me all the tests she can to reassure me and check everything. We have a family history of crohn's so she wanted to rule that out. She said I should be glad they have found nothing as what she looks for is life changing

I have IBS too and my dad has Crohns - it’s interesting to hear that your family history is similar! My sister is lactose-intolerant (diagnosed after a severe tummy bug/flare up) but still has IBS symptoms despite being lactose-free now.

Dr told me to avoid any twice-cooked carbs eg frozen pizza, dried pasta, ready meals, pre-baked pies, oven chips etc. But fresh pasta/pizza are ok. I have also worked out that coriander, oily fish and red wine particularly upset me.

I also used to be able to low-carb but more recently I get horrendous diarrhoea if I try it.

The best thing I’ve found so far is to stop snacking - my tummy can’t cope with it, and it needs a break between meals. That and eating salty food like crisps to help absorb water if I’m having bad diarrhoea!

Ahh now I've just read you said you had your gallbladder out. I had bad bowels/stomach for years and years ,told ibs. I had my gallbladder out and things got even worse. That was the cause of my Bile Acid Malabsorption from having my gallbladder out. I would place a bet now you have said that ,that that is the cause. Some people can get it for no apparent reason which is classed as Idiopathic. There are basically 3 types. As you have had surgery I would bet a £5 it's a good chance you have it if you are now having even worse issues. I hope you get some answers ☺️.

My husband is a sufferer. His best results are when he follows the fodmap diet using the monash app - he can adapt a little now and he's aware that some foods trigger him more than others so he's able to relax some rules now. It took a while for him to settle into this. He doesn't eat much of anything in the evening, main meals are breakfast and late lunch. He can't tolerate reheated food. Despite all this sometimes he just has a reaction he can't explain and is in agony, but the above have made is better than it was and the attacks less frequent.

Have had gut issues for almost as long as I can remember with a recent hospital admission for heart issues caused by my gut / vagus nerve irritation.

Then I saw an amaging Gastroenerologist who prescribed these.

I can honestly say that my gut has been settled and happy for the last 9 weeks. The change was almost immediate, just one week after I started taking them. A total transformation !!

You can buy them in the UK through www.precisionbiotics.com/uk

@tooExtraImmatureCheddar very similar. Both my children are lactose intolerant. It's like we all have terrible digestive systems.

The twice cooked carbs tip is interesting!

@mummymayhem18 since gallbladder removal it's a lot worse. I'll be interested to see if this scan shows me my cause. Do they control it be diet or medication

Try self diagnosing. Don't have dairy or gluten for a few weeks. Then introduce foods slowly. If anything triggers then you know

I don't have celiac either but lots of intolerances. Just have to try to work out what to avoid. Dairy and wheat main triggers for me but lots of others but the effect is not as bad. X

Wow some great tips thank you so much.

Does anyone even have an attack when they haven't eaten like first thing. Or could that be from days before food

I had the same problems before cutting out all eggs/dairy. I had very little before I cut it all out (was veggie before) so surprised it made such a difference, but it has. I was also bloated with terrible pain and constipated and now all resolved.

I'm afraid I have't read the whole thread, but are you anxious in anyway? I find it's my body's way of dealing with stress and anxiety, and my sister also has IBS and she's a real worrier and has constant flare ups.

I also suffer with IBS. I also have emetophobia which is a severe phobia of vomiting. Following CBT treatment for my phobia I found my IBS dramatically eased. Not sure how or why, but I have noticed a massive difference.

I also went totally sugar free for a few months a few months back and that helped me too. As soon as I started introducing it back into my diet the bloating and pain started back.

I hope you find a way of dealing with your IBS, I can't recommend colpermin highly enough, eases pain almost instantly xx

Ps i knew this is what's resolved it as went away for the weekend and had a cheese pizza for convenience and bam terrible stomach problems again. Cut it all out again and 99% of the time I'm fine. I can't believe the difference it's made to my life!

@tiredwife123 I am probably a worrier but only when I have something to worry about like this daily pain.

My dad recently died so I worry about my mum but I don't feel overly worried

There is no cure for it as it's a chronic condition. They prescribe what are called Bile Binders or Bile Acid Sequestrants. I'm on what is called Questran Light(cholestyramine) which is a satchet of powder that you add to a drink and take between 1-3 times a day. You start low dose as too much can cause constipation and work up the dose until your symptoms are more under control. That is normally the gp/consultants first try as the only other alternative is a tablet form which is very expensive and a lot of gp's won't prescribe because of the high cost coming out of there budget. I think it's about £180 for a prescription of those whereas the powder form is a lot,lot cheaper. I find carbs are actually better for when my stomach is bad,so bread,pasta,crackers,rich tea biscuits. Basically plain foods. I avoid spicy foods,acidic foods as these irritate and make things worse. Also salads are a big no no and fruits ,veg etc that have thick skins as because someone with BAM doesn't absorb the nutrients etc from food as it passes so quickly through and out your system. Deficiencies are very common with this condition due to the fact it's a malabsorption condition and we struggle to absorb things we need. I'm currently permanently on folic acid,vitamin d and have B12 injections every 12 weeks.

@mummymayhem18 interesting my B12 was 193 so am on tablets. Vitamin d 23, iron always low so absorption from foods doesn't seem good

Have a friend who decided to adopt a vegan diet. No IBS symptoms since doing so.

Echoing a lot of posts here. Stomach bug August 2018 - never been right since. Am now perhaps 95% gluten free and 100% lactose free. No intolerances found. Have learnt that this works.

Did full fodmap for 6 weeks and now really have never found a need to incorporate onions and garlic back in. (do still wonder if my love of french onion soup exacerbated things.) Garlic oil, the greens of spring onions, celery, a carrot and chives provide the 'base' of anything that goes in the pan.

Mild flare up of pain this week from a stupid meal I ate on Tuesday. Whilst I was getting away with the odd piece of any chocolate, I am now back on dark only for treats.

It's such a tricky area. Nothing provides a quick fix - you have to stick at it I think. I remember when it started, the pains in my lower back were very much akin to early labour pains.

Some people find antibiotics are a culprit for wiping out the good bacteria. I had to have them a while ago for an unrelated infection and wondered if they had assisted in getting rid of some of the bad stuff that was obviously still lurking in my stomach.

Also trying intermittent fasting but some days it appears to make things worse.

Best of luck, I hope it will pass. I never respected the job our guts have until mine started malfunctioning! I think unfortunately for me born in the 80s, growing through the boom of fast food and snacks and supermarkets, we have no idea of what our bodies need anymore. (of course not suggesting for a moment you dont OP, was just a massive eye-opener for me, having been able to get away with eating anything before!)

As sad as it sounds and I don't wish it on anyone it is somewhat comforting to know I am not alone in playing detective with a body that appears to change the rules when it fancies.

When I first developed IBS I couldn't believe that could be the right diagnosis because the pain was so bad. Some days I would be laid up, curled in a ball and crying with pain. I had all the tests but nothing showed up. I tried all the diets, all the meds, exercises, yoga...you name it.

It went away, miraculously and completely, when I got pregnant. It came back about 2 years later and I was devastated. But it's been a bit different - severe cramps and urgency with intermittent diarrhoea. Not the same agonising vice-like pain. More like a bad period pain.

I went through all the diets, meds etc again to see if anything helps and have found some success with Fybogel, taken once a day, after supper with plenty of water. Crucially, I don't eat anything again after that. It's a bit counter-intuitive, taking a fibre supplement for diarrhoea, but it seems to make everything move more smoothly. I still have some cramps and urgency in the mornings but usually one trip to the loo expels everything and it calms right down. Any lingering cramps seem to respond to Ibuprofen Lysine (it felt similar enough to a period pain I thought it was worth trying Feminax...and lo and behold it worked!) I also keep a hot-water bottle in my drawer at work which helps a bit if it kicks off when I'm there.
I'd say doing all the above has made my symptoms about 60% better. I'm not cured but I feel more in control. The same approach may or may not work for you but listen to your body and trust your instincts. Hope you find a solution soon.

Your vitamin d is a bit too low as well. Mine was 13 when consultant checked. I would keep an eye on the B12 tablets as because if you do have malabsorption problems tablets often aren't sufficient enough as can't absorb very well hence injections should be given. The NHS guidelines for B12 vary so far. They consider a normal range to be between 185 ish to 900 odd which is a huge range. Someone could have a reading of 300 but be experiencing symptoms of deficiency.

@Brookeborn it's hard work when everything was fine and then suddenly went bad. I have had 2-3 very bad bouts of tonsillitis last year and precious year and had antibiotics. This didn't help in sure but they were needed.

Never had tonsillitis previously either!

Thanks for some good advice I have some changes to make and see what happens

@HearMeSnore hot water bottles really help.
I find it hard to accept this pain isn't something more serious but if must be because everything else is almost ruled out.
I am glad you are finding something that works for you!

@mummymayhem18 I will keep an eye on these things I'll see what the SEHCAT brings and take it from there thank you