Finally diagnosed after twenty years!

[Merry_Widow]

I have finally got a diagnosis of IBS after at least twenty years of endoscopies, colonoscopies, scans, investigations, etc, etc. Strangely I feel much better even though they say it's a lifelong condition with no cure.

My problem today is that it's after half past six in the evening, I have had one buttered crumpet to eat all day and I have absolutely no appetite whatsoever. They say you should eat three meals a day - I feel like I can't even manage one!

What do people do? What sort of a diet do you have and especially when and how much to eat?

And drink? I'm concerned about dehydration. I have diarrhoea so I know I should drink more water but I find it very difficult. I fainted recently and they said it might have been caused by dehydration.

Any tips from more "experienced" people?

[Misspomfrey]

You have to be careful, if you are finding it difficult to eat enough, you may not be getting enough iron and other vitamins and minerals that you need, especially if you have diarrhea. This could be why you fainted. If you have been diagnosed with IBS then surely you should have been passed on to a nutritionist or given some kind of advise about diet. You must try to incorporate fibre into your daily diet to prevent diarrhea. Try a small meal of steamed fish and vegetables, try porridge oats for breakfast or anytime of the day as long as you can tolerate it. I sprinkle pumpkin and sunflower seeds on mine every morning. I sometimes have it later in the day if I'm having a IBS flare up. Eat fresh fruit daily, pears, apples and pineapple are good, pineapple has natural digestive enzymes in, some nuts if you can, walnuts are good. I prepare your own meals and keep away from processed foods as much as possible. I bake my own bread in a machine adding a teaspoon of Flaxseed and Physilium Husk, it's helped my symptoms greatly. Experiment in your own way but don't just eat nothing,you have to try and find for yourself what you can tolerate, everyone's different.

Have you tried a Probiotic, I'd be lost without mine. Again, it's a case of finding out what suits you. Go for a walk each day, I suffer from anxiety and walking helps me. Take some deep breaths throughout the day and before you go to sleep.

After 20 years you obviously know that this is a part of your life and you have to try and manage it as best you can.

Never take any prescribed medicines, I find after 16 years of this it's better for me if I manage it alone. Good Luck and I hope you feel better soon

[Merry_Widow in reply to Misspomfrey]

Thank you for this. Much appreciated. I am on the list for a dietitian but no idea how long before I'll be seen.

[Luisa22 in reply to Misspomfrey]

I only have to slightly disagree about the fibre, I know what suits one person with IBS doesn't suit another, but honestly I have to be careful about how much fibre I eat. I have IBS D too. Fibre basically "makes me go" and always did. But it's good to be able to eat some veggies or fruit if possible. But to calm a bad flare up I often have to go on protein and white rice (that kind of thing) until my gut steadies out. Some veg I find more friendly to my tum than others. Spinach is not too bad, and green beans.

At times like that and even generally if the diet is restricted, I found a good multivitamin /mineral A-Z once a day has certainly helped. Some of those have 50-75% of our daily requirements of all sorts of nutrients. Sure, it's better from food, but at least a supplement will stave off deficiencies.

But I wholeheartedly agree with getting outdoors for a walk and some fresh air regularly. I think that's the only thing that's saved me and boosts my spirits too.

[Jackie1612]

hi, Merry_Widow sorry to hear you are feeling like this. Unfortunately, or perhaps fortunately, we are all different. I cannot eat much, if any, fibre. And I find that avoiding dairy helps me.

I don’t know if you have tried relaxation, techniques, such as meditation – there are plenty on YouTube. Tara Brach is good.

[Merry_Widow in reply to Jackie1612]

Thank you - I am doing something called Behavioural Activation which is interesting but I don't think it's really hitting the spot! Relaxation sounds more like it, I'll try Tara Brach.

[xjrs]

Is not having appetite a normal thing for you? If so, this in itself needs to be investigated by a GP.

Your body needs nutrition including fibre and water to function. If the GP can't get to the bottom of your loss of appetite, ask for a referral, perhaps to an endocrinologist and a dietitian.

Have you tried anything to get the diarrhoea under control such as a well studied probiotic such as Alflorex or Symprove? Many people's IBS is due to a gut bacterial imbalance. Having a diverse microbiome helps to guard against IBS and means lots of good bacteria in your gut to balance out the bad. After probiotics, a diverse microbiome is achieved by having as a wide a variety of diet as possible. Probiotics may make you more tolerant to different foods (Alflorex helped me a lot with this, including tolerance to fibre). The best diet for your gut is the Mediterranean diet.

[Merry_Widow in reply to xjrs]

I've been referred to a dietitian but that can take months. The GP has prescribed loperamide (Imodeum) and that does help I think.

My daughter swears by probiotics and sent me some. I think they helped but the trouble was trying too many different things at once so I didn't know what was actually helping. I need to do a proper controlled experiment, don't I? 🤔

[xjrs in reply to Merry_Widow]

Yes. A food diary is really important. Including only trying one new thing at a time whether that is new food, a probiotic, medication etc. You also need to consider turnaround time. For instance, my transit time is 48 hours, so I monitor anything up to 2 days for each change, though this could be anything from 1-4 days for some people.

In terms of probiotics, not all probiotics are the same. I've used many over the years, they helped a bit but nothing like the benefit I've been getting from Alflorex which has been scientifically studied for IBS. It's a case of finding one that really works for you.

If you're finding all the usual IBS remedies don't help and you still have diarrhoea, you could ask for a test for BAM (bile acid malabsorption) which is a completely different condition and has separate treatment. Good luck.

[casares8]

I eat rice and fish or plain chicken, and clear soup. I find water makes me go more to the toilet so i tend to have warm drinks like mint tea, or normal tea with very little milk. I don't have anything with fibre until the diarrhoea has cleared up. A slice of plain white toast is ok.

[Merry_Widow in reply to casares8]

Thanks, that's useful to know. I'll take your advice next time I get the diarrhoea. Today the loperamide seems to be doing its job! But I think more tea has got to be in the everyday routine from now on.

[angelwings52]

The trouble with IBS is that what works for one person won't work for another - but in my experience over the past 25 years the best thing I did was to have hypnotherapy, I don't get stress related flare ups anymore, there are some good apps available or you could see a hypnotherapist. I struggle with getting the right level of fibre and have found that vegetables and fruit are better for me, I can't have any oats at all. I always have yogurt every day but I stick to greek yogurt which seems easier to digest (Lidl and Aldi have excellent Greek yogurt!). When my appetite disappears I tend to snack rather try three meals a day, and don't forget that fluids can come from food as well, I make a lot of soup and keep it in portions in the freezer (blended vegetable based soup is the easiest) and I find that's easy to digest. I would suggest that you ask your GP to do some blood tests to check your vitamin and mineral levels just to be sure. Hope you feel better soon.

[Merry_Widow in reply to angelwings52]

Thank you. My daughter just had hypnotherapy to deal with her fear of the dentists and it worked a treat! Maybe I'll give it a try. And soup - of course, why didn't I think of that 🤦‍♀️

[Merry_Widow]

Good news - got an appointment with the dietitian and my appetite's come back! 😀