Have you ever heard an ostomate tell you they have a “barbie butt”? Although it is supposed to just be funny and lighthearted, I think it’s a really good analogy for what your body will look like after surgery. Barbie Butt surgery refers to having your rectum and anus removed, requiring a complete sealing of your butt hole. After healing there is just a scar on your bottom, no more hole! It is most commonly done for patients who require a permanent ileostomy due to cancer or IBD. Some people have it done when their stoma is first formed, however, my doctors were hopeful I could recover and be a candidate for an anastomosis later in life so they left my rectum in place.
It was abundantly clear after about six months that my rectum was still inflamed. I still bled regularly and would pass painful mucous several times a week. I was frequently admitted to the hospital for these issues.
It was a long, arduous process trying to get this surgery done. I was scheduled for it with my original surgeon back in AL in March 2020, but between moving, changing health care systems, and getting all new doctors the process took a while. Even though my new colerectal surgeon ultimately agreed with my previous colorectal surgerons’ reasoning to remove the rectum, he was hesitant due to my age.
If I had a dollar for every person or medical professional who has told me “you’re too young to have anything serious” I would have hundreds of dollars. I really wish people would stop saying it to me (or anyone else). It diminishes my experience of living in a state of chronic illness since I was a child. It also reinforces the idea that younger people are not at risk for major illnesses, but I am here to tell you that is NOT TRUE.
Thankfully, once I explained the extent to which I’ve researched this surgery and how many “second opinions” I had received throughout the years, my surgeon was confident that I was making an informed decision. I appreciated when he said that I knew my body better than him and that HE’S NOT THE ONE LIVING WITH THIS AFTER! (What a concept, listening to your patients…)
Wednesday Sep 16, 2020 was the day I went under anesthesia to have my rectum and anus removed. The surgery lasted 5 hours and went very well. My surgeon has expressed how proud of my progress he is since the procedure. I have walked the halls multiple times a day, am eating, and managing my pain well.
Although I am nervous about the next phase of recovery at home without constant help from nurses and doctors, I am confident I have an amazing support team to get me through the next phase. Special shout out to Will for always stepping in as care giver when needed.
Overall I am very grateful for how this operation went. I am proud of my body and what it has accomplished. I am proud of my mental strength to go through this without any visitors. I have felt lonely at times, but instead of wallowing in it I picked out good movies to watch and a fun book to read. Plus video chatting makes it so much easier to feel connected.
Do you have a “barbie butt” or is your ostomy temporary? I am fascinated by the amount of different surgical options available to treat IBD and other forms of colorectal problems.
If you’ve gone through major surgery before, do you have any advice for healing at home?
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