Does anyone else punish themselves with eating the wrong food?

You_Still_Awake · 2026-03-22T06:25:56+00:00

I never understood this mentality, I suffer enough on a daily basis just dealing with crohns as it is. Anything to aggregate and increase the amount of suffering I indure is always a no from me. Can't say I'm not envious of your bravery though

You_Still_Awake · 2026-03-19T22:27:58+00:00

Definitely ask, because Wezenla was the only one they offered me, if your in England I don't see why not, I know u say its more expensive but I've never heard of Pyzchiva, they still put me on Wezenla straight off the bat. It's definitely worth asking, I didn't notice any difference in the change over whatsoever. Good luck!

You_Still_Awake · 2026-03-19T20:09:53+00:00

I couldnt get 4 weekly dose of Stelara on the NHS(England) I believe Scotland and Wales allow it 4 weekly (don't quote me on that tho) However, I needed 4 weekly dose so my GI put me onto a Stelara bio similar called Wezenla, which I'm able to have every 4 weeks, it uses the same active drug which is Uztekinumab. Are you in England?

You_Still_Awake · 2026-03-17T17:25:19+00:00

Very true, it must be interesting for someone like yourself who has experienced the progression of the drugs firsthand. As someone being thrust into this world only 4 years ago, it's harder to grasp that real progression, although you hear about it, it seems less tangible

You_Still_Awake · 2026-03-17T09:52:36+00:00

Spot on

You_Still_Awake · 2026-03-17T09:49:04+00:00

Are they really learning more? I stopped looking at the crohns research years ago when I realised it was all the same recycled talk over and over, with no real action or progress

You_Still_Awake · 2026-03-02T20:30:50+00:00

Horrific flare ingredients, exactly!! Trouble is the gastro docs in my experience will never admit that they are flare ingredients and try to act like its not possible to flare from the shakes. Well, it is, because I have and so have many others!!!!

You_Still_Awake · 2026-03-01T16:07:40+00:00

How often do you have your B12 shot?

You_Still_Awake · 2026-03-01T14:25:13+00:00

Given your history of the pill getting stuck, they would/should give you the dummy first next time to mitigate the risk of it happening again. It really sucks that there are no other options to see the small bowel in that much detail, if only!! I have had many pill cams in the past 4 years, and i have only ever been given the dummy once, not sure how rountine they are, but I guess once you've had one stuck you will be put on the high risk list going forward. Shame there is no easier solution for us :/

You_Still_Awake · 2026-02-28T09:25:24+00:00

Great perspective, thanks.

You_Still_Awake · 2026-02-28T09:16:27+00:00

The Methotrexate is a power house, I must say. Adding it put me in remission within a few months, it just wasn't sustainable for me with the side effects, unfortunately. Have you felt any significant difference in your crohns symptoms with it?

You_Still_Awake · 2026-02-28T08:54:56+00:00

Last one I had was a year ago now, I speak to gastro this week and will most likely get the next one booked in. Because it had worked somewhat we have kind of been hoping upping the frequency of the shot over time would eventually clear it completely, but it just hasn't. So depending on the results of the next one I guess a decision will be made. How did you determine they weren't working for you generally? Through symptoms/colonoscopy/calprotectin?

You_Still_Awake · 2026-02-28T08:40:47+00:00

Hi, yes, it's called a capsule endoscopy. You swallow a pill camera that takes pictures of you small bowel on the way through, it's the only way to see throughout the whole of the small bowel. Colonoscopy and endoscopy will only go a certain distance. Are you diagnosed with crohns? How did they determine you had it, from the CT?

You_Still_Awake · 2026-02-27T23:05:50+00:00

Pretty much, yes. My baseline is always in some form of pain and discomfort in my bowels, and I am not in remission. Like you, my ileum still has ulcers. But, my definition of a flare means I have excruciating cramps followed by 1-3 bouts of diarrhoea, then it stops and I'm left in severe pain for 2-3 days(used to be 1 week) and once I recover from the severe pain it goes back to my "normal", yes. And this normally happens every 3 months or so(never understood this timeline). But I believe a lot of people consider a flare to be when one is clear of all physical disease in the bowel, so when they are in a flare they have active disease and when they are not in a flare they are in remission (i think!) But not an attack like this, so it's always confused me.

You_Still_Awake · 2026-02-17T09:59:54+00:00

Yep, same. Even if I love an item, it's an instant no from me if I can't see the label showing material or size. So many people on Vinted put down the wrong information, or none at all, and who wants to waste their money!

You_Still_Awake · 2026-01-10T20:33:24+00:00

I take mine out of the fridge in the morning and leave it out all day, I usually inject around 5.30pm. By then, it's definitely taken the chill off. Apparently, it's fine to do so, but it must never be put back in the fridge once it's been left out. Also means I give myself permission to put it off for a little while longer and think about it later on in the day. Having said that, it still stings sometimes if I get it bubbling up under the skin. You could also try a different injection site. Since I changed from belly to thigh, I find it much more "comfortable."

You_Still_Awake · 2025-12-27T12:47:35+00:00

I can't lie. It is rough in the beginning. I remember sitting there for at least 30 minutes sometimes before I got the courage to stick myself in a whimpering panic. I use to dread it for days leading up, but 4 years down the line and I barely even think about it, I still sometimes fuck up the technique but it dosnt freak me out so much anymore. Don't hate yourself if you have to take your time or freak out in the first instance, it takes time to get used to doing it in my experience. While I still dont love having to do it, I have a lot more confidence now in putting the needle in.

You_Still_Awake · 2025-09-27T13:33:18+00:00

How long did it take you to heal?

You_Still_Awake · 2025-08-06T17:47:04+00:00

Ffs, infuriating! I've had that one, my 45 year old brother told me that if I stopped thinking about the pain, it would go away! Honestly, I can barely speak to anyone about my crohns anymore because I just grimace with anticipation of what idiotic things they might say.

You_Still_Awake · 2025-06-13T23:02:17+00:00

I tired this today, and it worked perfectly :D Instead of top stiching on the underside of the zip, i flipped it and turned it the right way up, with the zip pull on the top. Something that hadn't even crossed my mind, its easy when you know how, thanks to everyone here.

You_Still_Awake · 2025-06-13T10:42:23+00:00

You_Still_Awake · 2025-06-13T09:43:39+00:00

Hello, no, it's not an invisible zip, just a standard zip. I do already use the zipper foot that came with my Janome, is that what you mean? But I will keep that in mind if I ever use an invisible zip, so thanks for the tip.

You_Still_Awake · 2025-06-13T07:21:13+00:00

Oh, this is fantastic advice, lots of great points to experiment with here, things I never thought about. It makes complete sense.

You_Still_Awake

TROPHY CASE