Barbie Butt Surgery

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.

“Barbie Butt” refers to a specific surgery that leaves you without a bottom hole!

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.

2019 admission for rectal bleeding that required me to wear a diaper

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…)

I decorated my bag for surgery! “She believed she could, so she did!”

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.

Walking the halls ONE day after surgery

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?

Thank you for reading. Catch more of my day to day updates on Instagr

2019: A year in review.

2019 was a challenging and trying year. I felt immense stress the entire year because of my health issues. I did not go longer than a month without a hospital admission, including the hospital admission I am currently having. In total, I was hospitalized for over 70 days this calendar year, meaning I missed over two months of my daily life. This put a strain on my marriage and our finances since it resulted in me no longer working. The financial struggle that came with that decision has not been easy. Neither has the emotional toll it’s taken; I loved working and always found my sense of self through my job title. The transition to not working has made me have to reevaluate my self worth and work on my self esteem. 

There were definitely difficult moments in my relationship with Will this year, but we are now stronger than ever before! We decided our communication was the greatest of importance. We strived to speak honestly and openly with each other, knowing that each of us was coming from a place of love and utmost commitment to our marriage. We had our fights, but we never let them overshadow the growth we were making. We learned from them and let them make us better individuals and a better couple. 

While it was the most taxing year we’ve had since being married, there have been some truly beautiful moments in between the pain. For example, we began the year by taking our honeymoon vacation to Florida. We also had the opportunity to travel to California to visit with my family. We experienced Diane getting married to an incredible man. And we found new friends and a new hobby through Wolfpack Game Night. 

As I reflect on the past year, I cannot help but be saddened by the state of my health. I have dealt with depression and anxiety throughout my entire life, but it was especially challenging to overcome my demons in 2019. However, I am very proud of myself because I did not revert to negative coping mechanisms like I have in the past, such as purging or self harm. Instead I chose positive stress relieving activities, like drawing, meditation, and exercise. This made the bad times manageable and the good times even more enjoyable!

I have set some goals for 2020 that I intend to stick to, like regaining my independence and maintaining 30 minutes of both creative and active activities a day. I have also pledged to eat healthier and make self care a priority. 

I hope 2020 brings less chaos and more love for all of us. I hope you set goals for yourself and work on improving yourself. Even if you do not meet your intended goal, or have to adjust it after four months, just deciding that you want to better yourself is powerful and can result in change. 

Here are a selection of memories from 2019 for you to peruse and enjoy. I know these photos bring me joy and return me to times filled with laughter and love. I hope they do the same for you.

Happy new year. – Jules