Please help, exhausted with IBS😥

[11HerbsAndSpices]

Posted about my problems before but feeling particularly fed up today

I have IBS and am struggling with it. Abdominal cramps. diarrhoea and soft/fluffy poo. anal bleeding, extreme urgency immediately after eating. Bloating. The list goes on.

Today I ate a ham sandwich for lunch- not the healthiest but just using up what’s left in the house (simple ham, light butter and white bread) and exactly 11 minutes later I had to RUN to the toilet. The urgency came out of nowhere and I had about 20 seconds between realising I needed to go and having an accident. Bizarrely I had the same thing yesterday for lunch and was fine.

Thankfully I was at home so could run to the toilet but how am I supposed to deal with this at work or out and about? It’s not just a case of avoiding certain foods to stop the symptoms, anything can trigger it and it feels like they sometimes just start by themself. Over the last year ive tried fodmap, avoiding wheat, gluten, dairy, sugars, additives, all sorts. Nothing has got it under control.

Im exhausted with it all. My blood tests and poop samples were clear. I was referred to the hospital because of my symptoms, and they did another blood test and said everything was fine so discharged me with no need for further tests. Since then everything had worsened, and I was re referred, but the hospital rejected the referral and said it’s just IBS and that I don’t need any further treatment or tests. My own doctor said they can’t do anything else other than what they’ve already prescribed me but it’s not helping.

As I said, im not doubting their diagnosis and im sure it is IBS, but im exhausted with it all.

Op my heart goes out to you as a fellow sufferer of IBS...I know my triggers and avoid them completely for some reason certain herbs trigger me off.
It sounds like it's not ibs anymore if everything is triggering you, I would go back to gp and insist on more tests to rule out ulcers, diverticulitis etc and don't let the hospital fob you off. Your body is not going to absorb any nutrients if everything is going straight through your system.
Sending you massive hugs.

Unfortunately all you can do is keep trying various things and see what works for you. You could try probiotics?
Have you heard of SIBO? Worth reading up on that, and trying longterm low dose antibiotics.
For me, the best thing I ever tried was psyllium husk.. Which I know doesn't sound particularly amazing for diarrhea, but it works wonders for a lot of people. As does calcium supplements (very good for diarrhea).
Just keep trying things. Read through ibs forums, and try something for a couple of weeks, if it doesn't work, try something else. This is what I did. I tried to just live with it, various diets etc, for 15 years, before deciding I'd had enough.
Don't just accept it and live with it, it's hideous.

Do you do the low FODMAP diet? My DD has IBS and it has helped her greatly.

With blood in your poo and the severity of your symptoms you should be questioning your diagnosis and asking for a referral to a consultant.

Have you ever had a colonoscopy?

@theDudesmummy

Do you do the low FODMAP diet? My DD has IBS and it has helped her greatly.

Yes DH follows this and it's been life changing. That said he also had many tests, scans and kept diaries for a while that they reviewed so were content nothing else was going on. I'd push for more tests OP.

I don’t know whether this would work for you, or is something you already do, but it changed EVERYTHING for me.

I have IBS. When it was at its worst, it was exactly as you describe (I am the local expert on the whereabouts of toilet facilities).

Even when I have dieted, (because my weight is higher than I’d like) it has never fully helped, and what wouldn’t trigger an attack one day, would the next.

For me the massive change when I started regular exercise. At first I thought it was my diet, but I quickly discovered that when I slacked on the exercise for more than a couple of weeks, the attacks became more frequent again. When I exercise regularly and consistently, I can even eat junk food (a massive trigger) and not have an attack!

Like I said, might not be what works for you, but it’s worth a try if it’s not something you’ve already incorporated into your daily routine.

I would try to insist on a referral for a Colonoscopy because surely bleeding should be investigated further.

Have you looked into Histamine or Tyramine intolerance? I have problems with histamine and tyramine and cannot eat leftovers and have to be really careful with mature cheeses, opened cooked meat (so might explain the second day ham), leftovers of any type, smoked fish, milk that's been left out for more than half an hour, tomatoes, onions, soy products.

Maybe keep a food diary and see whether your triggering meals involve histamine and tyramine (a quick google will explain which foods are high in histamine and tyramine but things like cured meats, mature/aged cheeses, pickled foods, condiments, certain drinks (including red wine), soy beans, MSG).

It could be your gut flora that is out of balance. It's not easy to get it back into balance but there are steps you can take. IBS can definitely be a symptom.

How's your mental health OP? When my IBS was at its worst, like yours, I was struggling with PTSD and severe anxiety and depression. Getting that under control massively improved my IBS.

Oh also I imagine you already take them but just in case you don't anti-spasmodics like buscopan help with the spasms and loperamide/imodium can help with the diarrhoea.

OP, I was like you for years. I ended up keeping a food diary and identified triggers. Mine were bread, pasta (especially brown pasta) and anything wheat really. Iced buns were my nemesis!

Stress also set me off.

I suggest you keep a food diary and see what happens. I also recorded stress and mood in mine.

Doctors were useless so I went down the alternative route. I took probiotic tablets, Aloe Vera juice to calm the gut and Slippery Elm supplements.

I eliminated all wheat and after a couple of months my stomach was great.

I do eat wheat now but try not to have too much; it still creates bloating but I know my limits.

Would definitely recommend keeping the food and mood diary and just seeing what happens.

Oh and just to add, drinks like tea block the enzyme, which breaks down histamine so tea makes things a lot worse for me and I'm best with decaf coffee.

I would also note that for me FODMAP and exclusion diets didn't turn anything up, because the issue wasn't a food sensitivity or allergy but a mental health one.

Have you had a colonoscopy? I'd ask if you can be referred , ibs is awful I know what triggers mine so avoid it but a lot of the time it's brought on by worrying about it too the stress sets it off . Have you ever tested for ceoliac

Have a look at a product called symprove, the reviews are amazing on it! Might be worth a try.

As a fellow IBS sufferer of 24 years, you have my absolute, complete sympathy. I have similar symptoms (although no bleeding). Dramatic to some but it’s ruined my life. I too have tried everything to help and have put myself through a barrage of uncomfortable tests (only just Monday I had a pill camera endoscopy).
Did the gastroenterologist say what is causing the bleeding? It may well be worth pushing for a colonoscopy for peace of mind. I had to pay privately to see a gastroenterologist in order to go back on the NHS waiting list for a colonoscopy as the NHS gastroenterologist wouldn’t agree to it, bloody annoying and I couldn’t really afford the £200 consultation fee but in hindsight it was worth it for peace of mind.
If you haven’t already I would totally recommend joining some Facebook IBS support groups, they are brilliant when you are feeling so alone with this god awful condition. I recommend IBS Support (official) and IBS support group uk.
I hope you get somewhere op, keep pushing and if you are unhappy with the rejection of the latest referral try contacting PALS at the hospital for they are usually really helpful.
Oh and Google Gastrocolic reflex and IBS, I get this too. Stops me enjoying food or eating out!

It won't have been the ham sandwich. Eating triggers off your digestive system, so if it's a food it'll be something that as already made it's way to your gut roughly 12-24 hours earlier (can be quicker or longer depending on your transit time). Mine is about 24 hrs. So if I ate something yesterday evening that my gut doesn't like, eating dinner the next day usually reveals the reaction.

However, as a PP has said, blood is a worrying symptom that should be investigated, and regardless of that, IBS is a diagnosis of exclusion so everything else should be ruled out first. If you have had a full investigation including colonoscopy ten I would be pushing your GP fir a gastro referral.

If it is IBS. I cured mine with the FODMAP diet and can now eat almost everything but I sometimes need to take digestive enzymes if I know it contains an ingredient I struggle to digest.

However please get your symptoms fully checked out before assuming it's IBS and cutting out foods.

I've had loads of tests over three years and still have no definitive answers or diagnosis or solutions. Strict low Fodmap helps, but that's not supposed to be used for more than 6 weeks.

It is a total bummer.

Probiotic? Have you tried kerif or biomel for a month straight

Another vote for fodmap- within days I went from screaming agony to normal. But yes,more tests too

My own doctor said they can’t do anything else
Have they referred you to a dietician/nutritionalist?

When mine has been at it's worse I've been on daily loperamide for weeks (under doctor's advice). Nothing else helps. I know my triggers and avoid as much as possible but it's debilitating.

I disagree with PP about the gut transit thing, I have kept so many diaries, if I was to eat a brown seeded bread sandwich now, I know I will be in the toilet within 30 minutes.

I have had all the investigations done and nothing came back so the official dx is IBS-D, I also have a gluten intolerance (not coeliac).

I had IBS for years until I moved abroad and rather than say IBS they sent me to a proper doctor. It had such severely infected diverticulitis, it was about to rupture. A course of antibiotics and some fibre and I haven't had cramps or uncontrollable diarrhoea for about 10 years, before I was in constant pain. INS is a GP phrase for saving money on proper investigation, it isn't a thing in moat countries.

You have ALL my sympathy OP, I too am an sufferer and it is SO annoying when explain that you’ve tried FODMAP and been tested for food sensitivities or intolerance and then people suggest FODMAP and getting tested for allergies 🙄

Like one poster above I have also had to do daily lopromide at times and it’s just miserable and doesn’t solve the problem….just means you might be able to leave the house for a couple of hours!

I have also done FODMAP, digestive enzymes, acidophilus and probiotics, calcium supplements (as they are naturally constipating), lactase to help with lactose, antihistamine tablets to help with inflammation and x2 colonoscopies. I’m still suffering! At the last colonoscopy they removed a precancerous polyp and said they could see inflammation but I am still waiting on the full results….and I am not hopeful.

I am sorry I have nothing more helpful to add but I just wanted to say that I get it and I’m sorry that your going through this too.