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

Dysautonomia, POTS, and IV hydration.

My whole life I have struggled with syncope, or passing out. During these episodes my blood pressure drops and my heart rate skyrockets. While I have experienced this for many years, it wasn’t until August I finally received a diagnosis: postural orthostatic tachycardia syndrome or POTS!

According to doctors, POTS is a type of dysautonomia* that is defined by “orthostatic intolerance”, which means when a person stands up, a large amount of their blood pools in their legs instead of circulating back up through their heart. While blood pressure decreases, their heart rate goes up. A healthy individual usually has a slight increase in heart rate, by about 10-15 beats per minute, within the first 10 minutes of standing. POTS is considered present if the heart rate increases by 30 beats or more per minute for adults. I wore the Zio Heart Monitor for 48 hours. Over the course of two days my heart rate was recorded at >190 multiple times after standing indicating a severe case of POTS.

In order to be diagnosed I went through a battery of other tests with a cardiologist. I had a stress test in which my heart rate elevated to 202bpm, a tilt table test which resulted in my blood pressure dropping to the low 80s/40s, and an echocardiogram. Luckily my echo was normal, showing no structural defects.

POTS can be extremely dangerous. My heart rate averages 100bpm and is frequently much higher. I have made some life style changes and medication changes to deal with the orthostatic tachycardia and hypotension, but still have syncopal episodes and have hit my head multiple times. First, I am now on a low dose beta blocker three times a day. Most importantly, I always sit up on the edge of the bed for an extended period of time before standing up. Next, I wear compression stockings – especially when walking a long distance. I take salt tablets in the morning and salt my food. Lastly, I drink a LOT of water. But because of my high ostomy output that causes severe dehydration, I have to get IV hydration too.

My IV pole.

I have a home health nurse that comes twice a week to access my mediport and hook me up to a special kind of fluid called lactated ringers. They have added supplements, like potassium and glucose to help with my malabsorption issues.

The process takes about 5 hours total. I simply sit up in bed while the fluids rehydrate me. I do activities such as drawing and blogging, or when I’m feeling bad I’ll just nap.

My IV setup.

The fluids help immensely with my symptoms. Before receiving a bag of lactacted ringers my heart rate can be 130-150bpm and I can feel lightheaded, weak, and shakey. Then I have the fluids infuse and my heart rate will resolve to 90bpm and I feel better.

I am very thankful for finally having a diagnosis, although the symptoms are hard to manage sometimes.

*Dysautonomia is a term that refers to group of conditions that affect the automatic nervous system. October happens to be Dysautonomia Awareness Month! If you have any more questions please visit the contact page.

Women in pain.

UAB ER (Current admission), 2019

Welcome to Chronically Juliann! I use this handle because I suffer from multiple chronic conditions, some of which interact and interfere with the others. Stress absolutely makes my adrenal failure worse, and therefore more dangerous. But bipolar disorder is stress inducing. As is colitis, which can flare without warning. Any one of these diseases can land me in the hospital, but when they work against each other it becomes clear that I will require a long hospitalization.

Current admission UAB, 2019

I am currently admitted to UAB for a myriad of symptoms and a cocktail of issues: Abdominal pain, check! Stomal swelling, check! Rectal bleeding, check! Low immune response, check! Tachycardia, check!

While I am grateful to be admitted and receiving IV fluids, pain medication, and frequent vitals checks, it is unbelievably stressful and aggravating to be here again. I feel like the doctors do not listen to me or take my opinion into consideration. I began to get scared and feel terribly bad for the patients that can’t advocate for themselves because they don’t have a medical background. Then I realized they may have an advantage, because when I speak medical jargon and specify names of sensitive tests, I truly believe the doctors think I google symptoms and webmd info to “get what I want.” When in actuality, I have worked in the medical field for 8 years and have suffered from chronic illness for almost 15 years. Therefore, my knowledge is from a lived experience and high level training.

Also, I watch the doctors (especially male doctors) take my husband’s opinion more seriously than my own. I can tell them about my pain and bleeding and they don’t seem to care, or come up with a plan to evaluate. But when Will mentions the same issues, suddenly new tests are ordered or consultations for different doctors are finally being placed.

I decided to look into this more and found some disturbing statistics. Consider this: women in pain are much more likely than men to receive prescriptions for sedatives, rather than pain medication, for their ailments. For example, women who received coronary bypass surgery were only half as likely to be prescribed painkillers, as compared to men who had undergone the same procedure. We women wait an average of 65 minutes before receiving an analgesic for acute abdominal pain in the ER in the United States, while men wait only 49 minutes. In regards to the issue of chronic pain, women account for 70% of the people diagnosed, and yet, 80% of pain studies are conducted on male mice or human men. One of the few studies to research gender differences in the experience of pain found that women tend to feel it more of the time and more intensely than men. The exact reason for this is still unknown, and more studies are warranted. However, as previously noted, research on female pain remains limited and therefore likely will not be completed.

Research indicates we are not listened to and feel our needs are subordinate to that of the “system” (which includes the insurance companies and hospital administrators.) It is increasingly apparent that hospital staff (nurses and doctors) are unable to be sufficiently patient focused because they are beholden more to shareholders and administrators than they are to their patients. This may not be a fault of the individual, but rather a systemic problem that is perpetuated by profit margins and lobbyists. However, it is the patient that suffers because of it.

While this all feels seriously discouraging, I am going to continue to advocate for myself. As stated in my previous blogs, I as a patient know more about my body than physicians. Today when my team of doctors come in to round, I am going to be firm in expressing my concerns and desires. I want to know where my bleeding is coming from. And I would like my pain better controlled. Not because I am hysterical, but because I am experiencing real pain.

DCH ER (previous admission), 2018