Wit’s end with sudden IBS-D

[Galloplikethehorse]

I’ve had low-level IBS for years, worst it really got (aside from quite unpredictable bowel habits) was bad wind and bloating. However in the last few months it’s taken a real turn and it’s like I can never poo enough. As soon as I eat anything it triggers another bowel movement (varying from fairly normal to completely liquid). Lost my appetite and food makes me feel slightly sick so my weight is getting very low. It’s like a have a constant low level squeezing pain in my gut. Mornings are usually the worst and I can go to the toilet 5 times by lunchtime which is impacting me hugely in my work as I can’t wfh. I’m genuinely getting behind in my work and constantly have to think up excuses to nip to the loo.
when I have to travel to other sites for work where the toilet situation is unfamiliar, instead of looking forward to a change in routine, night in a hotel etc, I dread it now. I feel like my life is on hold whilst I try to sort it out and it’s giving me anxieties I never had before. I have already had to call in sick/leave work early several times recently due to the amount of time spent in the toilet.

Ive been bothering my GP constantly about this and he has sent off a range of samples, all of which are normal, so he basically isn’t concerned - whilst I’m starting to feel hugely anxious and depressed about the impact of the symptoms. I know there are lots of sufferers out there but has anyone had any joy? I’m considering going private now for a colonoscopy as GP wants to go through all the dietician etc routes first. This has been such a sudden change though I just can’t believe I would suddenly become dramatically intolerant to a food??

Have you tried imodium? Take 2 every night to calm your guts.

I personally just take 4 every other day. Gives me a bit of peace and a more predictable craps and eat a load of egg whites in scrambled egg to slow things down. Still go every day but only a couple of times.

I don't suffer from loss of appetite or weight loss through it though but I've been on imodium for years.

I agree with you though. You need the camera up to see if there's anything going on. I'd keep pushing for it.

What possible causes have you discussed with your doctor, has the conversation included serious things or are they just fobbing you off with 'intolerance' and nothing else?
Can you see a different GP and start the conversation again?

Could it now be happening because of your anxiety?

Did they offer you a blood test to check for coeliacs disease?

Thanks for your reply - I have to go away for work this week and plan to just take a load of Imodium. Good to hear that you can just keep taking it regularly with no ill-effects! My issue is that very occasionally I’ll suddenly pass a hard stool and I suffer with chronic anal fissures so that’s a risk for me with Imodium. Ffs I just want to not have to worry about my gut/bum the whole time…

They’ve tested for coeliac, blood in stool, calprotectin, all the usual blood tests. And also H.pylori in stool which can cause stomach ulcers. That came back positive and I had a course of antibiotics which made no difference - I think that was just an incidental finding. Everything else was negative

I’ve considered that for sure, I’m completely open to the idea that it’s driven by anxiety or similar. But it takes me by surprise - some days it’s really bad and I blame it on being nervous about a job interview or something. And then on a totally average day where I’m not worried about it at all, it’s sometimes really bad. Appreciate it’s not that simple but I’m leaning more towards a physical issue.

I have bad IBS myself I take Buscopan but still experience symptoms but it’s reduced the amount of times I need the toilet

Have you tried excluding certain foods yet? IBS is usually improved by dietary changes, particularly FODMAP. It is a bit of a chore working out what your trigger foods are but that's likely to be your issue.

Be careful with immodium until you know how it reacts to your body. I can only take one tablet then I'm blocked for two days even though I'm similar to you in multiple times every morning. If I took four like pp I would be blocked for a week!

I have started reacting badly to onion, garlic and tomato based products, including onion powder in gravy. From what I've read many people start reacting to onion around their forties. Could this be your reason too?

OP this was me! I got so fed up with the GP and lack of concern I did some private blood tests. I checked for food allergies and turns out I have an allergy to wheat.

I removed wheat from my diet and now most days have more normal bowel moments.

I tried low FODMAP, cutting out foods but never worked it out! Just make sure it’s a blood test looking at IGE if you want to do the same.

I take an immodium every night. Still go to the loo the next day but only once instead of seven times.
I'm intolerant to wheat, dairy and onion.
However some days I can eat these and other days not.
The more I worry about going to the loo the more I need to go.

Thank you so much for replies so far. I can’t tell you how much it helps to hear others’ stories, although I wouldn’t wish this on anyone. I’ve only been suffering this badly for a few months and it’s already taking over my life.
I’ve got a Bupa referral today for a gastroenterologist- very lucky to have this option. @Icantbuystrawberries, I will ask about blood tests for food allergies. Are these 100% accurate, do you know?
Has anyone else got any tips for what tests/questions to ask private drs? Since I got insurance I’ve been a little disappointed that private healthcare isn’t a magic wand and sometimes you still have to push hard to get symptoms taken seriously.

Unfortunately the way my gut reacts to Imodium is a total Russian roulette! Sometimes I’ve been constipated after and my issues with fissure have flared up (cue weeks of agony with that), other times it seems to do nothing.

Yes they are accurate, it’s an IGE response (IgE is an antibody that your body makes) I have other allergies and it’s what the allergy clinic use to diagnose how allergic you are to something along side skin prick tests.

I would ask for allergy blood tests and coeliac again (challenge test and eating 2 pieces of bread a day). They will probably push for a camera option too and take samples etc.

Just a watch out, make sure your blood are covered by the insurance as some cover doesn’t. Get it pre authorised first.

I had your symptoms for years after my gallbladder was removed. Eventually I was diagnosed with bile acid malabsorption. Daily medication has sorted me out.
Removal of gallbladder is one cause of this, but there are others.

Have you tried excluding lactose? Took me a few years to realise that I had developed lactose intolerance and it wasn't just a worsening of IBS

I was diagnosed with bile acid malabsorption after years of being told its just IBS. If it is IBS ask the gastroenterologist about trying amitriptyline as it helped me.

This could be me! Soft poos, cramps, diarrhoea etc since July. If I am going anywhere, I have to take a Imodium but I only ever take 1. Luckily, I dropped out on a locum GP that was previously a gastric surgeon. He suggested (& said this is the only one that is proven) I take symprove but give it 3 months to repopulate bacteria. He also sad to cut out wheat. Doesn’t know why but said there’s a massive surge in wheat intolerance in the last decade & that it can just come on.

I have bloods booked in for this week inc celiac etc.

Any shifts in hormones? Being peri or menopausal can impact.

DH had this. Fodmap diet has helped to identify his triggers and it's most spices, high sugar fruits, onions and dairy. There is a specific process of finding your trigger foods, long and boring but totally worth it. Also anxiety, if he's stressed about anything then he's in the bathroom for ages. He takes half of the lowest dose of amitriptyline before bed every night which has really helped calm the over active brain gut nerve.
Monash website is also very helpful.

I would look at getting a GI-MAP which will give a more accurate reflection of what's going on in your biome, viruses, pathogens etc. If your private care doesn't cover it look for a Functional medicine practitioner that can order comprehensive lab stool tests. I say this as someone who went to the Gp & specialists and had every nhs test going while suffering for two years trying to get help with gut severe gut issues and I was constantly told nothing was wrong. The GI-MAP (and I think another test that tested dna in stool) revealed severe h-pylori (which nhs tests didn't pick up), and two parasites including a rare tropical one causing all the issues. I had to have a course of very strong antibiotics prescribed by a private doctor and all the issues were gone within a week. NHS tests are pretty basic and just don't solve most gut issues.

wow, I’m happy for you that you managed to find an answer although the parasite must have been a shock! I have wondered about some kind of infection myself as the sudden ramp up in symptoms makes me think it can’t just be the IBS I’ve always had. Everything about it feels different, including the fact that I now have this constant mild pain/squeezing feeling and the appetite loss which is completely new to me.

So sorry to hear you’re suffering too! That GP sounds great. Mine has been lovely but he has strangely ignored some things. I’ve always been very slim and my weight is gradually getting lower and lower because of all this - my BMI is now 17. I keep mentioning it but the GP just ignores this as a concern. I assume it’s because it’s not ‘unexplained weight loss’ since I’m eating less, and also it’s not dramatic percentage wise. But to me it IS unexplained at its root and it IS worrying.
I did try symprove years ago (when my IBS symptoms were just gas and bloating) but stopped as it was so expensive. Might be worth me taking it back up again though!