u/Emotional_Potato7202

I (28F, UK) have been diagnosed with indeterminate colitis since 2018. I have recently discussed with a surgeon about potentially having a subtotal colectomy and an ileostomy. This would be fully my choice rather than an emergency surgery. There would be a scan to confirm if I had crohns in my small bowel prior to going ahead with any surgery.

I have been on mesalazine, azathioprine, Vedolizumab, Ustekinumab and Infliximab (as well as steroids, enemas and suppositories for flares). There’s the option of trying JAK inhibitors and a couple other medications but all the side effects sound awful and I may not still have full remission. I feel like I’m at a point in my life where I want predictability and some element of control over my own life and from what I understand a stoma can help to give this.

If anyone has chosen to get the surgery (rather than it being an emergency), please could you share with me how you made the decision thanks so much!

I (28F) have had an appointment with a surgeon to discuss the surgical options available to me - subtotal colectomy or appendectomy.

I am wondering how other people made the decision to go ahead with surgery in a non-emergency situation.

It feels like such a big decision to make and I’d be grateful to hear how people made their decision either to get the surgery or to stick with trying other medicines.

For background, I was diagnosed late 2018 with indeterminate colitis but the surgeon believes to be more in keeping with crohns and am on my 3rd biologic (Infliximab, have failed Vedolizumab and was allergic to Ustekinumab) and am flaring for the 3rd time since starting Infliximab (started Sep 2023) despite my drug levels being fine. I am UK based so insurance/cost isn’t a factor.

Thanks in advance!

I (28F) have had an appointment with a surgeon to discuss the surgical options available to me - subtotal colectomy or appendectomy.

I am wondering how other people made the decision to go ahead with surgery in a non-emergency situation.

It feels like such a big decision to make and I’d be grateful to hear how people made their decision either to get the surgery or to stick with trying other medicines.

For background, I was diagnosed late 2018 and am on my 3rd biologic (Infliximab, have failed Vedolizumab and was allergic to Ustekinumab) and am flaring for the 3rd time since starting Infliximab (started Sep 2023) despite my drug levels being fine. I am UK based so insurance/cost isn’t a factor.

Thanks in advance!