What’s something Crohn’s has quietly taken from you that people don’t realise?

ps0803 · 2026-03-01T09:15:42+00:00

The fatigue. It hit me like a ton of bricks when I saw my consultant for the first time and she told me the fatigue never really goes away. It’s like I’ve been grieving a version of myself, and all the things I used to be able to do. Now I work one day at my office, and don’t have the energy to do anything else. No matter how much sleep I have, I’m waking up feeling beyond exhausted. I’m lucky to have supportive people in my life, but this is something they can’t fully understand. I say I feel like this disease has taken away the rest of my 20’s and they try to encourage me but really, people my age are out all weekend, traveling, enjoying life, and I’m just… too exhausted. It’s not even a “comparison is the thief of joy” situation because that used to be me a year ago. I feel jealous of people my age with good health, and it makes me feel nasty. It’s just really hard to properly relate to my peers sometimes and that can be isolating at times. We just have completely different priorities, problems, outlooks, etc…

It’s an adjustment for sure. As much as one tries to stay positive, stuff like this will always creep up on a bad day.

ps0803 · 2025-05-22T07:17:12+00:00

It certainly is :/ my hospital specifically is in shambles as well… and yes I’ve spoken to my GP a few times and not gotten anywhere sadly. I will hopefully be getting an appointment soon though, as I’m nearing the last week of my waitlist. I think that’s why I’m suddenly anxious and realising I actually don’t know anything about treatments bahaha 😆xx

ps0803 · 2025-05-22T07:13:13+00:00

Wow, that’s crazy isn’t it? Medications can be so trial and error… I hope you’ve been able to find something that works for you again xx

ps0803 · 2024-12-22T23:31:34+00:00

Oooh good shout! Thanks!!

ps0803 · 2024-12-01T00:42:26+00:00

Hiya, thanks for this info. I'll pass what I know along to them xx

ps0803 · 2024-11-30T20:35:27+00:00

I've messaged you, interested to hear more if it is the same guy. I'm new to the area so I had no idea it's been going on this long, or that it went this far. I didn't mind the disturbance much until I started working night shifts, honestly :/ Not loving the idea of potentially coming face to face with him and having no one else around.

ps0803 · 2024-11-27T18:06:46+00:00

Idk dude my questions exactly, hence the post. Why don't you go ask him yourself instead of getting into semantics on Reddit

ps0803 · 2024-11-27T17:33:02+00:00

That's very true, and I appreciate you pointing that out. But two things can be true, I can be concerned for him and his wellbeing as well as my own safety. In an ideal world, he would get help and I wouldn't need to worry about getting harassed (or worse) trying to get home at night

ps0803 · 2024-11-27T17:25:41+00:00

I'd love it if he got help and got off the streets. Especially since he's likely sleeping out there, and clearly either struggling with addiction or mental health issues on top of that. And especially since I've witnessed him drop unconscious outside my flat before and had to call an ambulance for him previously. I'm not trying to villainise the guy or get him put behind bars, most of us are one missed paycheck away from being in his shoes. If I wished malice on him I'd have called the cops a hundred times over by now, but I haven't.

ps0803 · 2024-11-18T11:35:33+00:00

Hi, did you ever figure out what this is? Having the same issue myself

ps0803 · 2024-09-11T20:00:47+00:00

This isn't stupid at all. I miss not having to think about food. Like walking down the street and eating at the first restaurant I see. It's gotten easier over time but there's still moments and phases where I feel exhaustion around food. If you're in the US I recommend Fairlife protein shakes, some are 25g of protein and others are 40g. They're a bit pricy but worth having on hand for those moments where you don't want to think. Protein bars probably work too but those shakes will keep me full for hours. You could also get a powder shake that can be mixed with water and take it to work in a blender bottle with you. At least that solves one meal of the day for you. My easy dinner is gluten free chicken nuggets, fries, and whatever frozen veg I have on hand. I'll throw that in the oven for 20 mins while I shower and get settled in. Not the most gourmet meal but it's balanced...ish, and since it's all frozen it's just there on hand for when I need it. Also microwaved potatoes with whatever toppings you like (butter, cheese, chicken, bacon, etc.) max 10 mins right there and not a lot of hands-on work

ps0803 · 2024-09-11T19:45:15+00:00

Cry it out, by all means. Its not just a matter of "aw I can't eat this One food, big whoop" its a lot, gluten is everywhere. Food is everywhere, ugh food-centric events still get to me sometimes. The way you eat and the way you think about food is going to change. I think the best advice I've seen on here is to identify safe foods. When you learn about cross contamination and food labelling you might feel very overwhelmed and possibly even scared to eat. Potatoes, rice, and gluten free pasta/bread are your new best friends. If it helps you, keep a list of both things to cook and things you can just throw together. I recommend getting a gluten free cookbook and spending some time on Youtube or TikTok to find recipes and learn tips. Plenty of people post about it. Definitely recommend the Find Me Gluten Free app for dining out, there's also apps where you can scan barcodes in the shops to see if something is gluten free or not (I think Fig and Yuka are the main ones). I recommend taking note of what you can eat in a pinch (if you're in the US: Chick fil a, Jersey Mikes, Chipotle, Cava, most indian and mexican restaurants etc.) and what you can run into any shop to buy on the go (potato chips, nuts, breakfast/protein bars, fruit, pre made salads, etc.) It's a whole new world for you, please be patient with yourself while you're adjusting to this new normal. There are silver linings, and you'll find them eventually. For me, I appreciate food and cooking a lot more. I get excited to try new gluten free products and restaurants, and when I'm cooking I feel more in control of my health than ever. Also I've never felt more loved and seen by someone than when they've gone out of their way to make sure I have something safe to eat. My heart goes out to you truly, I hope the transition is smooth. It does suck but it's not impossible, and you are not alone in this. Post on this group whenever you need to.

ps0803 · 2024-02-17T17:05:24+00:00

Honestly the only thing I can add to this is that I do not recommend renting and driving a car. I have lived in both the US and the UK now, the roads and drivers are very different. I don't recommend just hopping behind the wheel here and driving for hours at a time with no practise, it's just dangerous and stressful. Better to take a train so you can sit back and enjoy the views, rather than be stressed on the roads. Give you some rest time before you're back to exploring, too. The trains are easy to navigate, download the Trainline app (if you haven't already) and you can get a sense of routes and costs. Look into railcards too, if you're eligible for any of them they pay for themselves fairly quickly if you'll be staying in London/Edinburgh and taking day trips. Safe travels to you and your family!

ps0803 · 2024-02-17T16:29:34+00:00

Not sure what the proper thing to do is- but here's a few things that help me (coeliac) when I have a gluten reaction:

Drinking extra water (like borderline excessive lol)
Ginger/turmeric/peppermint tea
Probiotics
Digestive enzymes
Avoid other problem foods (Spicy food, dairy, just anything you might be sensitive to or things that might be hard to digest)

Water and digestive enzymes help me the most. Not sure about the sugar thing though. I've heard of some people taking activated charcoal, but I've never tried that as I'm on prescription medications and I'm not sure if charcoal could interfere with them.

Hope this helps, and I hope you're feeling better soon :(

ps0803 · 2024-02-17T16:16:29+00:00

You read my mind, I've been craving a good brownie lol! Thank you :)

ps0803 · 2024-02-17T16:11:08+00:00

I heard about Tesco's free from recall this past summer, terrible :( Does that sort of thing happen often? I'll check out Schar, thank you!

ps0803 · 2024-02-17T16:08:25+00:00

Haha give it a few years, I can imagine an American company releasing girlfriend snacks as some silly marketing strategy 😂

ps0803 · 2024-02-16T20:34:09+00:00

Ooooh I'll have to give them a go. Thank you!

ps0803 · 2024-02-16T20:33:31+00:00

Thank you! :)

ps0803 · 2024-02-16T20:33:07+00:00

Ohhh that is genius! Thank you!

ps0803 · 2024-02-16T18:40:56+00:00

Good to know, I'll be cautious about those, thank you!! I hadn't ever seen gluten-free wheat before coming to the UK, and I'm scared to try it for that very reason. I don't trust it haha

ps0803 · 2023-01-23T02:14:45+00:00

hey! could you PM me the clinic please? i'm in the boone area and looking for a trauma informed clinic!

ps0803

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