A High-Level Look at Surgery for Ulcerative Colitis
Last updated: November 2022
So you've been diagnosed with ulcerative colitis and if that wasn't bad enough now your doctors are throwing around the "S" word. Surgery. I remember when the word surgery started working its way into my appointments. I was scared. I was resistant. I was in denial. There was no way I would be doing surgery because surgery equaled an ostomy and I was definitely not doing that.
I, dear reader, was an uneducated idiot. Don't be like me.
What I had right was that most surgery for UC does involve an ostomy at some point but what I had so tremendously wrong was that an ostomy was a bad thing. My surgeon had recommended that I chop out the 'ol colon and replace it with a fancy new j-pouch.
What is a j-pouch?
A j-pouch is a new reservoir for the stool that is created from your small intestine. It is then placed with precision and connected to your anus so that you can evacuate stool similarly to how most humans do. Which is all a very fancy way to say you can still poop using your butt.
A j-pouch sounded like a pretty great option at the time. I'd get to remove my diseased large intestine and replace it with something that was made out of me and allowed me to live a "normal" life? Where do I sign up?
But there was a catch and this is where so many people get hung up. My surgeon was proposing a 3-step surgery to get to my j-pouch and 2 of those steps involved living with an ostomy for a period of time. I couldn't! I wouldn't! I'd never!
Living with an ostomy meant staying alive with UC
After I threw a tiny pity party about this, my surgeon told me without exaggeration, that if I did not have these surgeries that I would eventually die from ulcerative colitis complications. That was enough information for me to decide that even though I didn't want an ostomy, that I would choose one if it meant staying alive.
The 3 steps of surgery for a j-pouch
Surgery #1 – Total colectomy
The first surgery I had is called a total colectomy. For me, this surgery meant the removal of my large intestine and the creation of an end ileostomy. An ileostomy is just like what it sounds, it's an ostomy made at the very end of your small intestine.
A small incision was made in my abdomen and the intestine was pulled through to create a stoma, which is where the stool would exit my body. After this surgery, I wanted to hate my ostomy. I wanted to be so mad at it, but I couldn't. After my colon was removed, I instantly felt better. The thing inside me that was actively working against me was no longer there and it was only made possible because of the ostomy. I had a new, healthier life because of my ostomy.
Surgery #2 – J-pouch creation
In the second surgery I had, my surgeon removed my rectum, created my j-pouch, and put it in place and swapped my end ileostomy for a loop ileostomy. In order to have enough small intestine to create my j-pouch, we had to move my stoma further up the intestine, creating what is called a loop ileostomy. The loop allowed me to still have a functioning ostomy but also to create the j-pouch and give it time to heal before I used it in the future.
Surgery #3 – The takedown
In a 3-step surgery sequence, this surgery is known as a takedown. Your ostomy is closed up and your j-pouch is essentially given the green light to do its job. This is generally the end of surgery for most ulcerative colitis patients on track for a j-pouch. This wasn't the case for me because, in surgery #2, we realized I had what was basically a short small intestine that didn't want to reach all the way down to my anus.
For me, surgery #3 was a second attempt to accomplish what normally happens in surgery #2 and it was successful. I ended up having a 4-step surgery sequence with #4 acting as my takedown.
Takeaways from the j-pouch process
So what did I learn in this process? I learned that I was very uneducated about ostomies and how amazing they really are. I am alive today because of the ostomies I had and will continue to shout from the rooftops how fortunate I am to have had them.
If you're living with severe ulcerative colitis and an ostomy is what is holding you back from surgery, I beg of you to please reconsider. I had no idea how great my life could be again until I completed my surgeries. Surgery isn't a light decision and it’s very, very personal. But if your current quality of life is very poor, it is something I strongly encourage you to consider.
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