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

Success.

Work headshot, 2018

Today I scrolled through Instagram and saw friends and colleagues from college celebrating milestones at their job and posting about their successes. (All of them well-deserved of course!) I felt proud to be from the same program as these brilliant professionals, but then I felt a serious ping of jealousy because I want to be in their shoes. I want to be succeeding in the field I am so passionate about and advancing in my career. However, I had to exit my dream career almost a year ago to allow myself to heal. It wasn’t a decision I made lightly, or one I even really made for myself. My health was spinning out of control and I began missing weeks of work for hospital admissions. I lost my ability to manage both a high-stress job and high-stress medical issues. Even though I loved the work and felt satisfied in my position, I had to accept that my health was more important.

Work attire, 2018

I left my job mid-September 2018. It broke my heart. I felt like a failure for being unable to keep up with all the work assigned to me. Through therapy and self-reflection I accepted that it was not because of a lack of intellect or will power, but merely the byproduct of being nutritionally depleted and horrifically ill. My last weeks of work was concurrent with the worst colitis flare of my life – I was experiencing such severe and frequent diarrhea that I required the bathroom 8-12 times a day. I could eat 5 foods total, knowing any deviation from that strict diet would increase that first number to 15 or 20. I was losing all my nutrients through my GI tract, therefore lost normal brain function. It was hard to hold my head up because I was so weak and it was difficult to find the words I wanted because my brain was foggy. My disease at this point was debilitating. So exactly one month later, I had my colon removed (November 13, 2018.) I knew when I couldn’t do the thing I loved the most -working in community health care management and development – I had to make a change.

Office Management, 2018

I took a part-time position at the company my husband is employed at. They needed help in the mornings and that gave me the opportunity to rest, heal, and follow up with doctors after surgery in the afternoons. I started slow, only working 12 hours a week, and gradually grew to being there 20 hours. The work was interesting and I felt good about what I was accomplishing, but it wasn’t in the health field and I actively longed to be involved in medicine again.

Only problem was that I still was not strong enough to enter the field in the same capacity. So I went back to something I am skilled at, medical scribing. I was a medical scribe all through undergrad and continued during my masters degree. Scribing offers incredible access to working with physicians and I grew a lot during college in those positions. However, it’s not what I thought I would be doing, but it’s something I am good at. The company I chose to work for has great benefits, like working from home. That helps me when I am exhausted and sick, because I just have to move one room over and I am at work. But even this job, that I am well prepared for and trained in, is too much for me. I can barely handle the small hours I am scheduled for now.

I have been off work for over a month because of my recent hospitalizations. My company has been more than gracious in allowing me the time off, but I can’t shake the feeling that I am not even healthy enough for this job right now. That thought carries further and then I fear I will never be healthy enough to get back to the type of work I dream of doing. I look at job postings for jobs I would love to do and would be well qualified for, if it wasn’t for the fact I can’t stay healthy long enough to be out of the hospital each month. It truly is a depressing thought that everything I worked so hard for and studied so long for could remain out of reach because of my health.

Society has conditioned us to believe our worth as a person is directly tied to the work we do. I admit I think this way too sometimes. Especially about myself. I felt important and fulfilled because of the work I was doing for under-represented communities in healthcare. Now that I am barely working and may require disability, I have lost my sense of purpose. I feel deep sadness and despair thinking back to the life I could have right now if I wasn’t plagued with being sick. It makes me want to revolt against my body. Sometimes I think “if I push harder, I can accomplish more.” But honestly I am pushing myself damn hard just to have enough energy to get to my doctors appointments and do small tasks around the house. I am actively battling my body and my brain to feel better, but healing is a long, arduous process.

I am trying to shift my prospective as to what “success” is. I am playing with what it looks like for me. It cannot, and will not, be a high-powered job with multiple meetings and strategic development anymore… But it could be this blog post. It could be showering tomorrow. The stability of my marriage. The joy I find in cooking. The little things that I used to not have time to notice or enjoy. And it definitely will be continuing to fight for my health to return to a state of normality.

Success tonight… getting fluids and laying in bed writing this blog post, 2019

Day 16 in the hospital.

As mentioned in the “my history” post, I am currently on my third week in the hospital. While I did have a short reprieve (I was discharged for less than 48 hours), laying in a hospital bed for nearly 16 days now has inspired me to continue blogging. I hope the information I share helps you understand the life of a #spoonie.

On my fourth day of admission (07/15) I had a flexible sigmoidoscopy completed to determine the etiology of my recent rectal pain and bleeding. “Fortunately” it was normal. I say that in quotation marks because while it’s a positive there’s no acute infection or disease process requiring immediate surgery, the negativeness of it means that more testing will be required. It also results in some doctors disregarding your symptoms entirely. While my core team of inpatient physicians have been thoughtful and dedicated to finding an answer, one of the consulted fellows spoke to me and my husband condescendingly and implied a normal exam meant I wasn’t actually in pain. He belittled me and insulted me, by claiming I had limited medical knowledge and therefore probably wasn’t as sick as I felt. This frustrated me on a multitude of levels.

First, I am a professional medical scribe with a vast working knowledge of medical terminology and treatment guidelines. Next, as a former nursing assistant I gained hands-on experience in healthcare and learned that a negative result does not mean you stop looking for an answer. Even greater than that, I hold a masters in medical anthropology meaning I have become an expert on some facets of chronic illness. Lastly, and I would say most importantly, as a patient for 15 years I have developed a strong grasp of GI terms and treatments. I know my body better than any other person, and can intelligently verbalize my symptoms. As a healthcare professional, I was bothered he dismissed my knowledge – but I was most offended as a well informed, chronically ill patient. I became sickened by the thought that patients without those backgrounds may be completely discouraged by a doctor like that and stop looking for a diagnosis. (I have so much more I could say on this subject, but I want to stay on topic. Look forward to a future post speaking directly on this issue soon!)

So, as I was saying, my negative flex sigmoidoscopy last week sent the doctors back to the drawing board. And quite frankly, it was a good thing they had to keep searching, or else they would likely not have discovered I have adrenal gland insufficiency (a potentially life-threatening problem.) I am happy to say I am now receiving proper treatment for the hypocortisolism!

As for the rectal pain/bleeding, high ostomy output, and abnormal vital signs that put me in the hospital originally… we are still no where closer to a diagnosis. So tonight I am NPO to prepare me for a series of tests tomorrow. First, a repeat flex sigmoidoscopy with the intention of obtaining different biopsies. Second, an ileoscopy, which is essentially the same thing just the camera is entered through my stoma. Lastly, an EGD where the camera evaluates the lining of the esophagus, stomach, and first part of the small intestine. With all three happening simultaneously, there won’t be a part of my GI tract unexamined.

The doctors hope to confirm a diagnosis of celiac disease with a biopsy, since my blood test was inconclusive. I am still waiting on the results of ACTH Stimulation Test to better understand the cause of my adrenal gland insufficiency. A number of tests are being done on my ostomy output, which the attending physician said are rare. But since my case doesn’t fit a common presentation, are warranted.

Just prior to midnight I finished drinking the bowel prep for the procedures and now am NPO [nothing by mouth] until the tests are complete. I will require conscious sedation and will likely remain sleepy most of the day.

Frustratingly, the biopsy results won’t result until early next week. So it will remain a waiting game. Until then, the doctors will continue to adjust my 20 different medications to achieve homeostasis and treat my pain. I should also have a consultation with my former surgeon about surgical interventions (including anastomosis or proctectomy.)

In the mean time, I desperately need an entertaining show to stream while I’m cooped up! Drop a comment with a show or movie that you recommend.