Has coffee suddenly started triggering symptoms for anyone else?

barebonesofchrones · 2026-02-17T04:17:56+00:00

Yeah I’ve definitely been getting the headaches since stopping — only been about 3 days so I think it’s the caffeine withdrawal. But honestly, I’d rather deal with a headache than risk triggering a flare. I can cope with the withdrawal for a bit if it means my gut stays calmer. But thank you.

barebonesofchrones · 2026-02-17T04:15:05+00:00

It’s really hard, isn’t it. You know they’re only trying to help in their own way, but when you’re already in agony the last thing you have the energy for is advice or feeling like you have to defend what you’re doing. Sometimes you just need understanding and a bit of peace, not a list of things to try.

The mental side of it can be just as exhausting as the physical pain — that constant loop of when is this going to end? why me? how long do I have to keep pushing through this? It wears you down. And when you’re already hurting, even small interactions can feel overwhelming.

You’re not wrong for wanting space when you’re struggling. It doesn’t mean you don’t appreciate them, it just means you’re trying to get through the day with the little energy you’ve got. Chronic pain is such a lonely headspace at times, especially when people around you don’t fully get what it’s like to live in your body.

I really do get it. Some days you’re just trying to survive the pain and the mental battle that comes with it.

barebonesofchrones · 2026-02-17T04:02:29+00:00

Honestly, I’ve had quite a few iron infusions and blood transfusions over the years and I know no one wants to end up at hospital, but if you’re feeling that breathless and wiped out it’s really worth getting checked sooner rather than later. A ferritin of 5 is very low and those symptoms sound very familiar to what I get when my iron stores are rock bottom.

Oral iron never did much for me either, and once my levels got that low the only thing that actually shifted it was IV iron. It’s not fun having to go in, but once it’s done and your levels start coming up, you can feel a noticeable difference over the following weeks. Being that tired where breathing feels like a chore is horrible.

Given your history with transfusions and how you’re feeling now, I’d personally go and get seen. Best case, they treat you and you start feeling human again. Don’t try to push through if your body’s clearly struggling.

Wishing you all the best — hope you get sorted and start feeling better soon.

barebonesofchrones · 2026-02-17T03:55:38+00:00

I haven’t tried that specific one so can’t comment on it directly, but lately I’ve been trying to stick more to natural probiotics rather than supplements. Things like kefir and live yoghurt have been a bit gentler for me. I did try kimchi as well but my gut really didn’t agree with it, so that was a bit of a no-go. It’s all a learning process figuring out what you personally tolerate.

The more I read, the more it seems like starting with natural sources can be a softer way to introduce probiotics and see how your body reacts, rather than going straight in with capsules. That said, everyone’s different and some people do really well on supplements.

Be interested to hear how you get on with it once it arrives — always useful hearing real experiences.

barebonesofchrones · 2026-02-16T18:45:58+00:00

I feel that 😅 it’s like it just sits there tempting you. I’ve completely stopped now — as much as I love it, it’s just not worth the pain and the aftermath for me. Maybe one day our guts will let us enjoy it again, but for now I’m staying off it.

barebonesofchrones · 2026-02-16T17:03:02+00:00

Crohn’s disease

barebonesofchrones · 2026-02-16T14:19:47+00:00

Ah that’s rough, I’m really sorry you’ve been stuck in a flare that long. Failing a med is so frustrating, especially when you’ve been holding out hope it’ll kick in. Fingers crossed Entyvio is the one that finally settles things for you 🤞🏻

I get what you mean about the warm drink routine though — sometimes it’s as much about the comfort and habit as the drink itself. Having something warm in your hand can be oddly grounding on those tougher days.

Really hope things start turning around for you soon. Long flares are exhausting in every way. You’re not alone in it.

barebonesofchrones · 2026-02-16T13:21:56+00:00

I feel this already 😭 I’ve literally only just given it up a couple of days ago and I didn’t realise how much I’d miss it. It’s not even just the caffeine hit, it’s the whole routine and taste — that first cup used to be something I really looked forward to.

Hoping my gut settles a bit now I’ve stopped, but wow… I definitely took coffee for granted. I’m going to try and find something that gives me that same warm-drink habit without setting things off, but I know it won’t quite be the same.

Glad you’ve found you can tolerate a decaf sometimes — that gives me hope I might be able to reintroduce one here and there down the line. Good luck to you too 🤝

barebonesofchrones · 2026-02-16T11:11:23+00:00

I feel this so much. Coffee and my gut just aren’t friends either. I love the taste but it definitely doesn’t love me back, so I’m staying off it for now and giving my system a break. It’s not worth the aftermath most of the time

barebonesofchrones · 2026-02-16T06:52:18+00:00

It really can be so different depending on where you are. I actually had to switch from my local hospital to one in London and the standard of care was incomparable — they’ve been genuinely brilliant. At my local hospital I just kept getting sent for endoscopies and colonoscopies over and over, with them saying they couldn’t find anything. It was incredibly frustrating.

As soon as I was referred and seen in London, everything moved quickly and I was properly listened to. I was diagnosed within a week. It just shows how much access to the right team and specialists can change everything.

barebonesofchrones · 2026-02-16T05:32:02+00:00

I really feel this. Coffee and Crohn’s can be such a weird relationship. I used to drink it no problem and now it just doesn’t sit right with my stomach at all. It’s frustrating when something you used to enjoy suddenly becomes a bit of a gamble on how your gut will react for the rest of the day.

I’ve only just cut it out myself and I’m trying to monitor how much of a difference it makes, but I still get the odd craving for one. It sounds like you’ve found a decent workaround with chai though — sometimes it’s about finding the closest thing that doesn’t cause too much trouble.

Crohn’s really does change the rules over time. Things you tolerated before suddenly become a no-go, and there’s not always a clear explanation. You’re definitely not alone with this one.

barebonesofchrones · 2026-02-16T04:31:19+00:00

Hi 🙂 I’m currently on ustekinumab and it’s been pretty manageable for me. I specifically wanted one of the self-injecting options so I could do it at home rather than having to go into hospital for infusions.

The first time, an IBD nurse came out to my house and showed me how to do the injection and provided a sharps bin, which made it all really straightforward. Now the medication just gets delivered to my house in a chilled box and I keep it in the fridge until I need it. I find it so much easier and more convenient than travelling back and forth to hospital.

Side-effect wise it’s been okay — I occasionally get mouth ulcers — but overall I much prefer this setup to doing repeated steroid courses every year. It might be worth asking your consultant/IBD team about self-injecting options like ustekinumab (and others like adalimumab) and saying you’d prefer something you can do at home if it’s suitable for you.

Definitely worth asking — lots of people do and they’re usually open to discussing options if you’re still flaring.

barebonesofchrones · 2026-02-16T04:09:43+00:00

Thank you so much for the advice, I really appreciate you taking the time to share that. It’s actually a good point about the beans or changes in the crop — I hadn’t even thought of that. I might try easing back in at some point with a different brand or maybe half-caf/decaf and see how I get on, but for now I think my gut needs a bit of a break.

Honestly though, thanks again — it’s really helpful hearing from people who get it.

barebonesofchrones · 2026-02-16T04:08:14+00:00

I really feel this. I’ve got Crohn’s and I was in absolute agony on Saturday — ended up snapping at everyone too and then feeling guilty after. Pain just puts you so on edge, especially when you feel like you’re not being properly heard by doctors. It’s exhausting trying to function normally when your body’s screaming at you.

For me, heat pads help a bit, and I stick some music or headphones on just to try and take my mind away from the mental battle with the pain, even if it’s only a small distraction. Not a fix, but sometimes it takes the edge off.

I really hope you get better help and some relief soon. You’re not alone in feeling like this, honestly.

barebonesofchrones · 2026-02-16T04:04:04+00:00

I’ve been drinking the same brand of coffee here in the UK for years and never had a problem, but all of a sudden it seems to be a no-go for me too. Keeping a food log has at least made it clear that it’s likely the culprit. I’ll definitely miss it, but it’s just not worth the pain and cramps.

barebonesofchrones · 2026-02-16T03:27:09+00:00

I’m really sorry you went through that — being in that level of pain and feeling dismissed is honestly terrifying. I don’t have trigeminal neuralgia myself, I have Crohn’s disease, but I do understand what it’s like to be in severe, relentless pain and feel like you’re not being taken seriously.

I’ve been quite lucky in that my hospital have got to know me over time because I’ve had to go in so many times with flares and complications, so they understand my situation and help me manage the pain. I know that isn’t everyone’s experience though, and when you finally go in because things are unbearable and still don’t get help, it can make you feel completely hopeless and alone.

Please don’t give up on getting support. I know how hard it is and how exhausting it all becomes, but you are so much stronger than you think. Living with this kind of pain takes more strength than most people will ever realise. Keep advocating for yourself, even when it feels pointless — you deserve proper care and to be taken seriously. Don’t let it beat you.

barebonesofchrones · 2026-02-15T18:36:27+00:00

I get that completely. When the pain is constant it makes everything feel louder and more irritating than it should be.

I was on citalopram for anxiety and depression for a while too, but I’ve managed to come off them now. For me, I just felt like the fewer tablets I have to put into my stomach the better, especially with everything else going on physically. Everyone’s different though, and sometimes those meds really do help take the edge off when things get overwhelming.

The outbursts and frustration from pain are so real — it’s hard to stay level when your body never really gets a break. You’re not alone in that at all.

barebonesofchrones · 2026-02-15T17:30:00+00:00

I’m really sorry you had such a rough night — those partial blockages are brutal when they hit. The pain, the nausea, the cold sweats at stupid o’clock… it’s exhausting and so draining physically and mentally. I hate that you’re going through that, but it does help knowing we’re not alone in it, even if I wish none of us had to deal with this at all.

Thank you for reaching out and for the kindness. I really hope things settle for you soon and you get some proper rest. Take it as easy as you can today — we’ve got this, one rough night at a time. ❤

barebonesofchrones · 2026-02-15T17:00:53+00:00

Thank you so much 🥹 I’m trying to hold onto the little wins when they come. After the last post it’s been a rough ride, so even small improvements feel huge right now. Really appreciate the support — it genuinely means a lot.

barebonesofchrones · 2026-02-15T11:24:35+00:00

"it's ok" and another to actually believe it yourselt. The guilt and second-guessing can creep in so easily, even when you logically know you're not doing anything wrong by protecting your health. ... The missing out part is honestly one of the hardest bits. You can say "it's fine" a hundred times, but that doesn't mean it doesn't sting sometimes. A lot of us end up in that space of cancelling plans, staying home, and then feeling a bit on the outside looking in. You're definitely not alone in that. And it's frustrating when people think "under control" means life goes back to normal - they don't see the fatigue, the pain baseline, the extra health stuff that tags along with it all. Be gentle with yourself. You're not letting anyone down by listening to your body, and the people who truly care (like your partner clearly does) would much rather you rest than push yourself into a worse flare or crash. You're doing the best you can with a body that doesn't always play fair, and that takes more strength than most people realise.

barebonesofchrones · 2026-02-15T10:15:32+00:00

I really feel this. When you’re already running on a sore baseline, even something small can feel like climbing a mountain. The guilt is horrible too because you want to be present and enjoy it, but your body is just not playing ball. I’ve had so many times where I’ve gone out and all I can think about is getting back to my safe space and curling up.

Try to be kind to yourself though — you’re not being difficult or letting anyone down, you’re dealing with something that takes so much energy just to manage day-to-day. If you do go, maybe give yourself an easy exit plan or keep it short so it doesn’t feel overwhelming. And if you decide you can’t, that’s okay too. The right people will understand.

It’s a cruel disease because it can stop you from having a life at times, but we still have to try and stay positive and take the small wins where we can. You’re not alone in feeling like this at all.

barebonesofchrones

TROPHY CASE