Loose bowels for years

[Blueberryme]

I am 51 and have had loose bowel movements since my late 20’s and the only investigation a GP has done is referred for a colonoscopy in 2002, whereupon I was told all is fine, it’s IBS, and just don’t eat something if it upsets your gut.

I have been to the GP a couple of times since and literally told that’s nice, it’s IBS, it’s very common, off you go. I am better now than what I was years ago (diarrhoea up to 10-12 times a day, with terrible stomach pains, wind, and urgency to go).

But, I still have loose bowels 2-3 times a day. On the Bristol Stool Chart I’m always a 6. If I eat things like homemade soup, Weet Bix, porridge, anything very milky ie milkshake/smoothie (avoid this usually), most breads, pasta, lots of vegetables/salad in one meal, I could go on and on - then I’m rushing to the toilet within 30-60 minutes with foul-smelling loose stools, and/or wind.

I simply cannot hold on to a bowel movement for long otherwise I’m full of foul wind and stomach pains.

If I try and eat low carb then my bowels tend to get better, which seems to me to indicate gluten as it in a lot of breads and other products? I tried gluten-free bread though and that went straight through me too.

I’m fed up and want a definitive answer after nearly half my life spent rushing for the toilet multiple times a day. Surely a GP should have offered testing for gluten intolerance and lactose intolerance (I was told to have this years ago and it never happened), etc?

I also find that I avoid doing anything where I am not close to a toilet, so long walks/hiking etc is out of the question. I’m so fed up.

I feel sorry for you. That sounds awful. In my town there's hardly any public toilets and I don't like going to the loo in public toilets at the best of times. I find fruit makes me want to dash to the loo. Mango and grapes and peepers are nice and tasty but upset my tummy maybe if you eat peppers lay off them? Brown bread makes me go to loo so I have switched to white bread. I had constipation for the first time this week. Might be with having low fibre white bread but I felt like i was going to pass out with pain
Awful isn't it. Dr's no good just say irritable bowel.

Doctors really have my back up at the minute.
I think you can buy test kits from Amazon I’m not sure how reliable they’ll be though. Could be worth a try.

Have a look at a FODMAP diet. It might help you find out what’s upsetting your stomach.

I would try going gluten free for longer. It can take a couple of weeks for things to settle down so you need to give it time. Also, I would definitely try going dairy free. Maybe try that first.

Great idea! Gluten free has to be for a few weeks and definitely try dairy free.

Have you asked to be tested for coeliac?

If planning on asking for coeliacs testing, do not avoid gluten before having the tests done, or you can get a false negative result; you must continue to have gluten in the usual quantities for the results to show up in your favour.

Could it be yeast and not gluten? I suffer if I eat bread but not cakes, and I can tolerate small amounts of sour dough.

I feel your pain though. I am similar, though not quite so bad.

the FODMAP did nothing to help me unfortunately.

Sounds like ibs. I find proper sourdough is OK. Other than that Buscopan is good for those days you struggle to leave the toilet.

I was going to say gluten too. I would say do a serious gluten free diet for 2 weeks at least and then see where you stand. Gluten is in so many things that you wouldn't expect so check labels carefully and stick to it rigidly for a few weeks. That should be enough time to see if it's improving things.

You can't just cut out bread, you have to check every label if you are trying gluten free (after the appropriate blood tests etc to rule out coeliac. For example wheat is in things such as stock cubes, sauces, Barley is in malt vinegar. If you don't cut it all out for at least two weeks you will be miserable eating gf bread but still won't get a definitive answer on whether it is responsible for your symptoms.

Bile acid malabsorption.
Ask to trial colystyramine.

Come back and update us.

100%. I had a period where if I ate anything with gluten in it I got severe pains. My bloods showed no celiac disease so I think it was more a sensitivity than intolerance - I think I have that the right way around!

Anyhow, I was stunned and amazed how many food items can have contain gluten. Even something like a Starbucks frappe did! So you will have to be quite diligent on your entire diet for sure.

PS I had the issue for a few years until one day it suddenly disappeared and I no longer got huge burping from just a bite of a kitkat or intense pains from a mouthful of pasta. It coincided with the most stressful part of my life with a marriage break up and moving back into parents house and starting a new job with a horrid micromanaging boss so I guess once life got better so did my ability to digest food luckily.

However since I turned 51, my bowels are a fair bit looser and have actually been thinking of going gluten free again so would be interested to hear an updates if you do go down tha route. All the best though managing your condition.

Lactose intolerance can cause symptoms like this

You have my sympathy, I can be the same but less consistently than you describe. It impacted on me hugely when I became almost phobic about going out, eating out, being anywhere without a loo (busses, hills, countryside) or where it might be awkward to try to get to a loo (theatre, weddings etc). Eventually I made myself start building up how much I challenged myself and am now back to a more normal life.
I have a toilet finder app on my phone. I check for where toilets are as this makes me more relaxed. I am prepared for the worst.
Though my GP didn’t refer me because of this I did get referred to gastroenterology for something else and they do love checking though more inclined to do endoscopy or colonoscopy. Less keen on tests.
If it is a while since you last saw the doctor it might be worth you going back to see if any change in people has led to them being more willing to test you, baby GPs love tests.
There is a lot of gut brain research just now and I know that the more calm I am the less inclined I am to trigger IBS, yoga has helped! It doesn’t make it better but it makes me handle it all better.
I hope you manage to get some blood tests to start ruling things out.

Your IBS sounds similar to mine. I had no help at all from a succession of GPs - they're just not interested, they seem to think it's something we just need to endure.
I highly recommend going to a registered dietician. Mine identified my problem straight away (vasoactive amine intolerance mainly) and gave me detailed dietary advice. If I stick to avoiding all the problem foods my symptoms are 99% gone. That would be a very restricted diet so I keep the levels of these foods low, making sure I don't have too much in a day. If I do have too much I suffer for it.

I hope you can take some comfort in knowing you are not alone. If I were you, I would chase up the GP and ask for allergy testing and a coeliac biopsy. If this is a sensitivity/IBS trigger and not a full-blown intollerance, you can just try eliminating foods from your diet picking one food each month and see what works. Personally, I have to avoid dairy and fatty foods.

My DH has IBS and similar symptoms, and especially after having dairy. We cut out milk and products with lactose and it's made a difference.

It makes me think yours are related to lactose intolerance too. Maybe try lactose free milk to begin with and see if that makes a difference?

Sounds like me before I went on binders for bile acid malabsorption (BAM) Took me years to be taken seriously and had all the same advice you’re being given about gluten, FODMAP etc. It wasn’t that, my gallbladder was kaput and leaking bile into my bowel constantly. So I had acid churning through my system constantly. I would go about 8 times before I could leave the house and I couldn’t ever go a whole morning without going.

i insisted on being referred to gastroenterology and v luckily had a dr who had lots of experience of BAM. He suggested giving binders a go, because it wouldn’t hurt to try - if they didn’t work I could stop them straight away and if they did work we would know exactly what the problem was. They worked. Thank GOD. I take 4-5 Colesevelam tablets with my evening meal every day (forever) and my bowels operate mostly like a regular persons now.

I have just been prescribed these I hope to god this is what it is and it works. I am so fed up. I have got the powder sachets though which I’m not looking forward to but needs must!

I have had a gastric sleeve and gallbladder out so I do think it could be BAM

I have a gluten intolerance but also cannot eat 'gluten-free' substitutes.
Gluten makes me unwell in many ways, but 'gluten-free' bread just goes straight through me. I think it's the xantham gum?

Have you been tested for H Pylori? It is a simple stool test.