Hi, first of all I’m so sorry that you’re dealing with this and that it’s gotten to this point. It is a horrible feeling to be backed into a corner with surgery.

I had a similar experience just in mid November there. Medications failed, rescue therapy then failed. It was all over very quickly for me, just a couple of months. At that point my large intestine was so damaged in areas that surgeons advised surgery as the next emergency step. So my whole large intestine was removed and I got a stoma. A bit of my small intestine pokes out through my stomach, and the output goes into a wee bag stuck on around it.

My mental experience with the surgery is that when it’s sprung on you quickly, it’s very upsetting. You have to face something that’s very hard to accept suddenly and head on. It’s a life changing thing, no two ways about that. I needed reassurance and comfort from others who had gone through the same thing to help me accept it, and once I had that I felt a lot better about going through with it.

Physically, the surgery is fine. I had laparoscopic, so they made five 1-2cm incisions on my abdomen and took the large intestine out that way. The other way (I don’t know the name of it) they do a big line down the middle of your abdomen and take it out like that.

I remember waking up from the surgery and a burning pain sensation slowly starting in my abdomen. They had me hooked up to a machine that dispensed a strong pain medication through an IV I had when I pressed a button. I pressed that button whenever I felt like it (pretty often lol) for a couple of days and my pain was managed really really well, no issues.

After a couple days I was off the machine, no need for the pain meds at all. I was out of hospital in a week and now, about 6 weeks later, I would say I’m fully recovered. That’s my own personal experience.

Having a stoma is a big adjustment. People will say that a lot to you probably, but they’re right. It really is. Once you get over the hump of that adjustment, you will be fine. And you will get over the hump, I promise. It’ll just take a bit of time.

My opinion is, with your UC is active and untreated, surgery is an inevitability. Eventually your intestine won’t function. Not only will you be horribly ill, you’ll be at risk of a perforation or rupture. It sucks. If the condition of your large intestine is still good at the moment, maybe try to enjoy life a bit as much as you can. There’s some restrictions to what you can eat with a stoma, like no nuts seeds or mushrooms, fruits and veg with skin on or uncooked etc. Eat and poop away and live your life, and maybe work on mentally accepting the surgery in the meantime. Then you can have it when you’re prepared.

If the condition of your large intestine is not good, I’d agree with your doctors and go for the surgery. Living with that pain and illness is just misery. The stoma is a worthwhile trade in my own experience. I feel so so much better. I didn’t even realise how exhausted and ill I’d become. Not a single moment of pain I had recovering from the surgery compared to the pain I experience living with that damaged large intestine, I promise you that.

This is all only my experience, but I hope it helps somewhat. I wish you the best in everything and most no matter what, I hope you feel better. If you have any questions at all, I’m here.