Why I Opted For A Permanent Ileostomy

I’ve had a permanent ileostomy since 2016. Prior to that, I had a J-pouch and was expecting a temporary ileostomy to give my J-pouch time to heal. People often ask why I opted to have a permanent ileostomy instead - there are several reasons for my decision and I’ve decided to discuss them in this month’s blog post.

The main reason I opted for a permanent ileostomy was to avoid more complications

My J-pouch didn’t seem to be healing well, so I didn’t fancy my chances with a temporary stoma – it would have just prolonged my suffering until I had to lose the J-pouch anyway, and could have caused more damage in the meantime. This was realised when I was admitted to hospital with increasing pain and scans showed my J-pouch lining wasn’t just inflamed and swollen, but infected. There was no doubt, after seeing those scans, that having it all removed to form a permanent end ileostomy and Barbie butt was the way forward. But my surgeon had to take my case to the board of directors for a decision. (Read more on this in Stephie’s post: Why My Stoma Was Worth The Fight)

Those scans allowed me to be more prepared for having a permanent stoma

Without those scans, I may have gone in for temporary stoma surgery…but once the operating team had seen the state of my J-pouch they would have had no choice but to create a permanent stoma – and I would have woken up to quite the shock! So I was grateful for the doctor who pushed for those scans, as it meant I was able to mentally prepare myself prior to the surgery; I already knew what the outcome would be.

I did lots of research into permanent vs temporary ileostomies

Prior to meeting with my surgeon to ask for a permanent stoma, I had also done my research and noticed that a lot of people found loop or temporary ileostomies a bit more troublesome than permanent ones and that the risk of cancer increases if the stump is left in place. I also really didn’t like the idea of mucous and the sense of urgency to pass the mucous – that didn’t appeal to me in the slightest!

I feel that the active disease that spread into my J-pouch came from my rectum

So personally I just felt like it would be a vicious circle going round and round if I had a temporary ileostomy then a reversal. I just wanted to be as healthy as I could without the risk of Ulcerative Colitis coming back!

I would always suffer with the side ailments that are part and parcel of having Inflammatory bowel disease but at least I wouldn’t have the pain, the blood, the urgency, the accidents and ultimately the worry that comes along with the active disease.

I truly feel like I made the correct choice

Now living with my Barbie butt and my forever stoma, I truly feel like I made the correct choice for me. I understand it might not be the right choice for everyone, and that - for those who do go permanent - your reasons may be different to mine, but that just goes to show how unique we all are and how our diseases may affect us differently.