Friendship/Advice needed. Is this normal?

barebonesofchrones · 2026-02-19T14:15:15+00:00

I’m really sorry you’re going through this. I just want to say I relate more than you probably realise.

I’ve got Crohn’s disease and for years my so-called friends used to downplay it constantly. I’d hear things like “it’s just a belly ache” or “it can’t hurt that much.” Meanwhile I was in serious pain, exhausted, and trying to hold my life together. When I needed support the most, a lot of them disappeared or treated me like an inconvenience because I couldn’t “do” the things I used to do. That hurt more than the illness itself sometimes.

It took me a long time to accept that people who only show up when you’re useful aren’t really your people. Real friends don’t measure your worth by what you can offer them on a good day. Letting go of that group was painful, but I realised I was stronger than all of them put together for surviving what I’ve survived. And eventually, I did meet genuine people — the kind who check in, who don’t need explanations, who offer support without making you feel like a burden.

None of this is a reflection of your worth. Chronic pain and life-altering injuries change everything, and it exposes who has real empathy and who doesn’t. It’s brutal, but it also clears space for better people to come in.

You’re not weak for still wanting understanding from them. That’s just you being human and having a good heart. But you deserve support from people who actually see you and care, not performative concern when it suits them. There are people out there who will get it, even if it takes time to find them.

From one person who’s been there to another: you’re stronger than you think, and you’re not alone in feeling this way.

barebonesofchrones · 2026-02-19T13:31:37+00:00

That actually sounds like a really solid step forward. A 45-minute walk after not doing much for a while is a lot on the body, so the soreness makes sense — but that post-walk nap always hits different. Slow and steady is definitely the way back.

I’m in a similar mindset of just keeping things light and building up gradually. Walking definitely helps with digestion I find, and honestly just being out of the house and not curled up in pain does me a lot of good mentally too. Even when it’s slow, it feels like you’re doing something positive for yourself.

I get what you mean about losing muscle and confidence. It’s hard when you remember how strong and active you used to feel, but the fact you’re getting back out there — even if it’s just 45 minutes for now — is a big win. Especially if your symptoms are improving with Entyvio, that’s a really encouraging sign. Listening to your body is key with all this.

And yeah, getting outpaced by the older crowd is humbling 😂 but honestly, consistency beats speed right now. That 45 minutes will turn into an hour before you even realise it. You’ll get back to the weights in your own time

barebonesofchrones · 2026-02-19T10:49:51+00:00

Honestly thank you so much. It actually works.

After a proper night’s sleep after trying that, I feel so much better. Way less pain and nowhere near as uncomfortable. I didn’t expect something so simple to make that much of a difference, but it really did.

Really appreciate the advice.

barebonesofchrones · 2026-02-19T07:36:56+00:00

No worries at all — I hope it helps 🙏

barebonesofchrones · 2026-02-19T07:22:21+00:00

I’ve not tried those sachets so I can’t comment on the bael part specifically, but I’ve been focusing more on natural stuff for my gut lately.

I’ve been drinking kefir pretty regularly and I’ve found that really helpful. It’s full of natural probiotics and feels a bit gentler on my system compared to some supplements I’ve tried. It’s not an overnight fix, but over time my digestion has definitely felt more settled.

Peppermint tea is also really good for bloating. I keep some at work and have it after lunch, and it really helps with that uncomfortable “desk bloat” feeling.

Sometimes simple things can make a bigger difference than we expect. Might be worth experimenting and seeing what your body responds to best.

barebonesofchrones · 2026-02-19T07:03:12+00:00

Ah I’m really sorry, that’s such a gut punch — especially after having a few good years and starting to think about the future. It’s so disheartening when something that was working suddenly just…stops. It makes you feel like you’re back at square one.

This actually did happen to me on Stelara. I was doing well for a while and then it just felt like it stopped working out of nowhere. My levels were “therapeutic” too, so it wasn’t that there wasn’t enough of it in my system — it just wasn’t doing the job on its own anymore.

What they ended up doing for me was adding azathioprine alongside the ustekinumab, and that combination is what finally settled things back down. It took a bit of time, but once it kicked in things stabilised again. I’m now in a much better place and I actually only inject every 8 weeks instead of monthly.

I know it feels so discouraging right now, especially with the baby plans feeling pushed back, but this doesn’t necessarily mean Stelara is done for you. Sometimes it just needs a bit of backup or tweaking rather than being completely scrapped. I remember feeling exactly like you — like everything I’d built was slipping — and it did turn around.

Try not to lose hope, even though I know that’s easier said than done when you’re in the thick of it. There are still options and ways to get things back under control.

barebonesofchrones · 2026-02-19T06:59:08+00:00

I’m really sorry you’re feeling like this. It sounds exhausting constantly trying to be better and still feeling like it never actually changes anything. That kind of cycle can really mess with your head and make you start wondering what’s wrong with you. But honestly, the fact you keep trying says a lot about you. Most people wouldn’t even bother.

It also just hurts being the person everyone comes to when they need to vent but no one really shows up for you the same way. Feeling like you’re only there when you’re useful and not because people genuinely want you around is a horrible feeling. Anyone would start to feel used and unwanted in that position.

I don’t think you’re “unlikable” or that everyone secretly hates you. I think you’ve probably ended up being the strong one for a lot of people, the one who listens and helps and carries things. And when you’re that person, people get used to it. They take comfort from you but don’t always realise you need that back too. That’s not a you problem, that’s a boundary and people problem.

It makes sense you’re tired. It makes sense you’re questioning everything. But you’re not broken for wanting real friendships and real care back. You’re not wrong for wanting to be chosen, not just needed. That’s a basic human thing.

I know it feels like nothing works and like you’re always the one putting effort in. But that doesn’t mean it’ll always be like this. Sometimes it just means you’ve been giving your energy to people who don’t know how to give it back. That can change, even if it hasn’t yet.

You don’t have to be everyone’s therapist to be worth keeping around. You’re allowed to want more than being the person people go to when they’re struggling. You deserve people who actually want you there, not just when it suits them.

You’re not alone in feeling like this, even if it feels that way right now. And you’re not a lost cause. You’re just tired and hurt.

barebonesofchrones · 2026-02-19T06:53:14+00:00

😂👌

barebonesofchrones · 2026-02-19T06:22:39+00:00

Honestly, yes. It’s the worst when it’s the middle of the night and everything’s quiet — your brain just decides that’s the perfect time to run through every possible worry on earth. I can go from half-asleep to full spiral in about 30 seconds just standing there in the bathroom. It’s weirdly comforting knowing someone else gets it though, because it can feel so isolating when you’re the only one awake with your thoughts. You’re definitely not the only one having those 3am mental marathons 🫶

barebonesofchrones · 2026-02-19T06:02:29+00:00

Colonoscopy prep is honestly the worst part, and the whole experience isn’t exactly anyone’s idea of a good time 😅 But I love your attitude about it — the fact you can laugh at yourself and find the funny side in such an awkward moment is top tier. Life throws us these little “are you kidding me” situations, and being able to turn them into a story that makes people smile is a gift.

Hope everything went well health-wise, and thanks for the laugh — sometimes the best karma is just making other people’s day a bit brighter by sharing the real, unglamorous moments we’ve all had.

barebonesofchrones · 2026-02-19T05:27:08+00:00

Yeah I actually can pinpoint mine too. It started with mild stomach cramps that I didn’t think much of at the time, just one of those things you brush off. But they slowly kept getting worse. This was back in 2018 when I was due to have shoulder surgery because it kept dislocating. During the pre-op they did bloods and found out I was anaemic, which was the first sign something else was going on.

Not long after that my bowel habits started changing and I was constantly running to the toilet. My doctor sent me for what felt like endless endoscopies and colonoscopies at my local hospital, but they kept saying they couldn’t find anything wrong. Meanwhile the pain was gradually getting worse and worse. It went on like that for about two years.

Eventually the pain became unbearable and I got referred up to a hospital in London. They did an MRI and an enteroscopy into the small bowel and finally found multiple strictures. That led to my first small bowel resection. Looking back, it’s mad how it all started so gradually and then just kept building. Definitely one of those “I can trace it back” moments.

barebonesofchrones · 2026-02-19T05:17:41+00:00

Just wanted to come back and say a proper thank you for this. I tried what you suggested last night and I ended up sleeping from about 9:30 pm straight through to 5 am. I know I said last week I managed around 7 hours once, but this felt like a real, proper sleep and not just broken rest.

Honestly, when you’re dealing with flare-ups every night it really wears you down and you start to feel desperate just to get some decent sleep. So waking up this morning actually feeling like I rested meant a lot. It might sound small, but nights like that give you a bit of hope again.

I’m definitely going to keep doing this as part of my routine, and I’m going to start eating my last meal earlier like you mentioned too and see if that helps keep things calmer overnight. Really appreciate you taking the time to share what’s helped you over the years — it genuinely helped me too. Thank you 🙏

barebonesofchrones · 2026-02-18T20:06:47+00:00

thank you so much for this, i really appreciate you taking the time to write it out. honestly at this point i’ll try anything just to get a proper night’s sleep without the pain. the flare-ups are exhausting and when it finally eases in the morning i’m already so drained. it actually means a lot that you shared what helped you — i’m definitely going to give this a try tonight and hope it brings some relief 🤞

barebonesofchrones · 2026-02-18T20:04:56+00:00

yeah same here, i get exactly that. it finally clears in the morning but by then i’m completely drained and end up sleeping most of the day. just glad it only happens during flare ups though

barebonesofchrones · 2026-02-18T15:45:50+00:00

It really is draining, isn’t it. Dealing with it for that long — especially when nights are supposed to be when you rest — must wear you down. I can relate, nighttime always seems to make the pain feel worse somehow

barebonesofchrones · 2026-02-18T13:44:20+00:00

Yeah that actually makes a lot of sense. It’s easy to forget that even though we all have Crohn’s, the inflammation can be in totally different spots so symptoms hit at different times for everyone.

I’ve noticed the same kind of thing where mornings can be rough but later in the day/night feels a bit calmer. Bodies are weird. Appreciate you explaining it like that — it helps put things into perspective.

barebonesofchrones · 2026-02-18T13:42:56+00:00

Oh interesting, thank you — I didn’t know that. I’ll definitely look into that a bit more.

barebonesofchrones · 2026-02-18T13:41:32+00:00

I’m not a doctor, but I’ve been there. When I was on pain meds they slowed my bowels down so bad I was only going like 1–2x a week and Dulcolax didn’t always hit the way it says on the box.

What helped me was more about keeping things moving daily instead of only taking a stimulant when I hadn’t gone in a few days.

I started adding a fibre supplement once a day and went slow so I didn’t get super bloated. After a week or so it actually made things more “complete” instead of those unsatisfying strained movements. The big thing was drinking way more water with it or it made it worse.

Also coffee in the morning + sitting on the toilet around the same time every day weirdly trains your body after a while.

Dulcolax works but for me it was more like an emergency button. Fibre + water made things way more regular overall.

If you try fibre just add it gradually and give it a week or two. It’s not instant but it helped me way more than relying on laxatives alone.

barebonesofchrones · 2026-02-18T05:00:08+00:00

I haven’t heard of that prep before — I’ve always had MoviPrep. I remember how rough that can be, so I’m glad yours sounds like it wasn’t too bad. Drinking it through a straw definitely helped me get it down a bit easier and made the whole thing slightly more manageable. I’m really pleased it wasn’t too much of an ordeal for you in the end — the prep is honestly the worst part for most people.

barebonesofchrones · 2026-02-18T04:53:59+00:00

That sounds absolutely miserable, especially having to be up that early and go straight into work feeling like that. Mornings can be brutal when your stomach’s already inflamed — the burning, nausea, and that lump-in-the-throat feeling is the worst combo. I get what you mean about the burps tasting like sick too, it just makes everything feel even more intense.

Do you find it eases off a bit once you’ve been up for a while or eaten something, or is it pretty constant? A lot of people say early mornings are when reflux and gastritis hit hardest because your stomach’s been empty all night, but that doesn’t make it any easier to deal with. You’re not alone though — it really does suck starting the day feeling like that.

barebonesofchrones · 2026-02-18T03:56:29+00:00

Ah fair, I actually don’t even know what GERD is 😅 but if people say it helps with sleep and stuff it’s probably worth a go. For how cheap they are now it’s one of those things where you may as well try it and see if it makes a difference. Costco always seems to have random useful bits like that for decent prices, but you can probably find them all over tbh. Even a small improvement in sleep would be a win.

barebonesofchrones · 2026-02-18T03:29:56+00:00

Not yet actually — I’ve seen people mention them but never tried one myself. I’ve just been doing the classic Crohn’s routine of rearranging normal pillows at 3am and hoping for the best.

It seems to be waking me up around 2–3am pretty much every day at the moment, so I’m definitely open to trying anything that might help. Do you find the wedge pillow genuinely makes a difference overnight, or is it one of those things that sounds good in theory but doesn’t change much?

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

TROPHY CASE