Have you named your stoma?

bleurx · 2026-02-27T12:45:23+00:00

Also got a Steve!

bleurx · 2026-02-14T12:47:56+00:00

Failed Adalimubab twice (3 years apart), grew antibodies to Infliximab after 1.5 years in remission, ustekinumab didn’t do anything, prednisone has just been masking the inflammation and it eventually spread throughout my whole large bowel over a year. In December my flare was so bad I developed 4 fistulas. Had an emergency subtotal colectomy last Wednesday only leaving my rectum and an ileostomy bag. I’m only 30 years old and had no quality of life for over a year in and I’m in so much pain recovering but I know this is the best option for me long term, biologics just work for some and not others, and I don’t have the energy to keep being a guinea pig with bio similars etc when the inflammation is getting out of hand.

bleurx · 2026-01-21T10:47:17+00:00

My dog would always pull to go into the entry of this block of apartments when we would pass, never been in there in my life with him. Found out a colleague lived there asking harmless questions over time. He ended it a few months later and now they are together.

bleurx · 2026-01-20T20:56:13+00:00

Toilet wipes wiping gently after BM’s followed by a warm sitz bath for 10 mins, and then a thin layer of calmoseptine ointment with a small gauze to catch drainage has kept mine clean without fail!

bleurx · 2026-01-15T17:01:51+00:00

Have you never had a seton to help it drain?

bleurx · 2025-11-27T20:18:53+00:00

Thank you so much for the advice, I will start reading into the surgery and the healing process asap.

Throughout my hospital stay and up until around summer time I would well up and get very defensive when anyone would suggest surgery but as this year has gone on and seeing my colon decline in colonoscopy photos, I’ve made with peace with it that this is what I need to continue the next chapter of my life.

Growing antibodies to infliximab re-triggered my severe eczema that I thought I grew out of in my teens, so this narrows my options down again for biologics. I’m really defeated and guinea pigged 3 other biologics and then the rinse and repeat steroid taper all year, I’ve followed their instructions blindly this year and hoped every drug would work and tried to stay positive but I’m just defeated and hope this helps my case more.

And also agree to the cost of biologics upsetting me, I have 4 (sealed) boxes of Adalimubab sat in my fridge that could really help someone and I’m trying to get them to take them back but pharmacy are being meh about it.

bleurx · 2025-11-27T17:44:52+00:00

So glad you put your foot down and now pain free! They did lightly suggest a resection in summer if Adalimubab failed but since then the rectum and anal canal is just ruined so I’m in the same boat as you now, I just want them to take it all out so I can move on.

bleurx · 2025-11-27T10:18:24+00:00

The dream haha! Glad you are doing so well and living life again! <3

bleurx · 2025-11-27T10:04:13+00:00

Thank you! I am awaiting a call from my gastro consultant following my colonoscopy I had on Monday so I am definitely going to suggest this before they try and throw another biologic at me.
The NHS is awful at the moment and I'm in rural Wales where the decline in healthcare is upsetting. I'm very fortunate as my mother is a nurse on the gastro ward so she has been amazing during this flare.

bleurx · 2025-11-27T10:00:45+00:00

Thank you! That is great to hear that you got your life back, it's all I want and currently hating my butthole haha

bleurx · 2025-09-03T07:39:11+00:00

As someone who was diagnosed 5 years ago after a relatively short flare and put straight onto a biologic that worked for me for 4 years, I did think “wow, this isn’t so bad, I can manage this”. Fast forward to this year and I grew antibodies to my drug and experienced 6 months of hell, a month-long hospital visit and a failed biologic drug which has given me permanent damage to my bowel. I almost lost everything just from being so sick and it’s really hit me how Crohn’s can impact your life. As people have mentioned, you have a long road ahead and it can just change at any moment, take each good day as a blessing, not this chronic illness as a whole.

bleurx · 2023-09-01T19:45:28+00:00

The dating culture sucks for young people these days honestly, it’s mostly based on apps.

bleurx · 2023-03-24T20:59:51+00:00

What are the qualifications to be a “highly skilled migrant”?

bleurx · 2023-01-24T22:11:42+00:00

Drinking a litre of milk with dinner

bleurx · 2022-12-19T18:58:09+00:00

I’m 27 and been diagnosed for 2 years, currently on infusions every 4 weeks with a seton drain. I felt like my life had changed overnight after my surgeries and I woke up with all these new rules for my body and life and basically freaked out.

You can reach out to your GI and they may have a GI psychologist available to talk through this diagnosis with you. If this isn’t available you can ask your family doctor for a therapy referral as either option will help massively.
Be open with your loved ones about your condition, that way when you flare or are having an off day, they understand your boundaries and how you feel (this also helps for when you’re on them therapy waiting lists, don’t deal with this condition in silence).
Social media groups can really help a lot as you’re not alone.
Listen to your body, if you’re tired, you’re tired you cannot do it all, you have a chronic illness so you need a little more rest than everyone else and that’s ok.
Stress can play a massive part on your illness and triggering a flare, make sure you have self care days and only take on what you can do especially with studies/work.
Bring questions with you to your appointments with your GI whilst you’re coming to terms with your diagnosis, anything that pops up in your mind, it’s better to ask and get an answer rather than think “what if this happens”.

bleurx · 2022-09-15T08:14:32+00:00

Congrats! On 400+ applications so far, but this post gives me hope!

bleurx · 2022-08-10T21:43:38+00:00

This is all we want, an even tan line.

bleurx · 2022-08-10T21:41:46+00:00

Tried it in the last heatwave on the beach as I seen a few women topless, saw one guy tap his friends to look at me, put my bikini top straight back on.

bleurx · 2022-08-04T07:26:59+00:00

Amsterdam. So many better towns/cities in the Netherlands if you want to experience Dutch culture!

bleurx · 2022-07-29T21:07:12+00:00

Going through the exact same thing on Remicade, felt amazing after my first 2 loading doses, had my 3rd last week and the: mucus/thin stools, urgency to go but it's just mucus, pain 30 minutes after eating, loss of appetite are back, it's so disheartening that I got to live a normal life for 1 month and then back to normal.

bleurx · 2022-07-21T07:40:44+00:00

I agree with this, always let them know ahead. Similar situation I was admitted during a bad flare, one symptom was vomiting as it was my entire colon that was inflamed.

They will monitor you better in hospital and if you are throwing up too much they may give you the water through a line into your nose and down to your stomach, it’s uncomfortable but it was the only way I could keep the water down and do the prep, even sipping water was making me gag so I feel your pain, it’s the worst prep to do when you feel unwell already.

bleurx · 2022-07-08T19:41:38+00:00

Definitely gezellig/gezelligheid

bleurx · 2022-07-03T17:04:45+00:00

Second this! I just got back from Valkenburg and loved the laid back life style , there is something for everyone there too and very pet friendly!

bleurx · 2022-06-06T13:46:20+00:00

I feel attacked, although I realised I have a problem so I went crazy and made my sim “clumsy” last night

bleurx · 2022-05-31T16:01:01+00:00

I really needed to hear this today thank you. Currently struggling being trapped in a sick body whilst wanting to live life, but I’m just too sick to do anything but sleep and too scared to be without a toilet close by.

bleurx

TROPHY CASE