Pictures at a pumpkin patch

Julian, CA 10/25/20

I am two weeks out of surgery and was in need of some fresh air! After nearly 20 days inside a hospital sunshine is exactly what the doctor ordered. So Will and I drove to Julian, CA to find a pumpkin patch.

Funny story, at our house in San Diego it was sunny and 73 degrees. As we drove through the mountains we discovered the temperature had dropped by nearly 30 degrees, it started raining, and we were in a wind advisory area. Safe to say we changed our plans and drove right back down the mountain.

Hope was not lost yet, though, as we neared the end of the road there was a huge pumpkin patch and corn maze with available parking! Even more importantly it was significantly warmer and not raining. So we pulled out the camera and found our way through a maze of corn.

It was wonderful spending the afternoon with my husband. Throughout the hospitalization we were not able to see each other. COVID19 rules dictated no guests were allowed.

Truthfully, it took a toll on our relationship. We had started getting into routines and using coping mechanisms that didn’t involve the other person in order to survive. While it was necessary to get through the battle of surgery, it was damaging.

Even when I got home things felt harder than usual in our relationship. Normal, easy conversation felt like work. I could feel us getting frustrated with each other easily. We also would miscommunicate about minor things then find ourselves in a full argument minutes later.

Luckily, we addressed our issues head on. We both came to each other wanting to improve. Through dedicated time together, increased intimacy, and special dates just for us, we discovered the fun of each other again. We realized the really stressful and traumatic experience we just went through had the ability to pull us apart, but instead we dug in deeper and worked harder to have a fulfilling relationship.

You can see the joy in these photos and the love that we share for each other. I am grateful for a partner who will follow me around with a camera because it brings me happiness to have great pictures. I am also grateful for a partner who supports me through the hard days in order to celebrate the special ones.

Let’s Celebrate 🌎 World Ostomy Day

Hooray! It’s World Ostomy Day!

October 3rd ostomates and caregivers celebrate our life saving surgeries and the subsequent devices that sustain us. Whether you are a full barbie butt, like me, or only experience an ostomy for a short time before a j-pouch, I celebrate you and your journey.

What I’ve gained most from my ostomy is confidence. Both in the sense that I am no longer fearful of having a major accident in public, but also my body image has improved.

I struggled with body dysmorphia for most of my life and thought the bag would make that so much worse. But truthfully, it opened my eyes to see just how powerful my body is. To still be standing after going through so much trauma, pain, and change is a true miracle. So instead of punishing my body with harsh words, I filled my heart with gratitude for myself instead. The love I have for my body now is directly because of my ostomy surgery.

I celebrate the journey!

I celebrate how far I’ve come!

And now I celebrate my body!

Here’s to all of us who have continued to fight to survive. I hope you see your value and worth every single day.

Adrenal insufficiency

Hello everyone, welcome to chronicallyjuliann.com. Today the topic I want to discuss is adrenal insufficiency… and that is because I was diagnosed with it, again, today because my cortisol levels were undetectable per lab work.

Cortisol helps your body respond effectively to stress. It also plays a role in bone health, immune system response, and the metabolism of food. Without the proper levels, one can experience dehydration, pain in abdomen, fatigue, sudden dizziness, severe chills, vomiting, and even loss of consciousness. Low blood pressure is also common. (Side note, I have experienced all of these symptoms recently.)

The low levels in my blood, mixed with my very intense symptoms, convinced my medical team that I had adrenal insufficiency again.

For those of you who are unaware, I was treated for adrenal insufficiency last year through April 2020. I stopped taking the steroids when my endocrinologist said my glands were working properly again and I could discontinue the medicine. I did as my doctor said but felt lots of symptoms return – like fatigue and weakness.

Currently, steroids such as Cortef are the only treatment available to treat this disease. But the side effects are very extreme – weight gain, irritability, and hair growth are a few.

Now we fast forward to last week when I had my surgery. The procedure went very well, but my heart rate was too fast, or what medical professionals refer to as tachycardia. At complete rest, my heart rate spiked to 180 bpm and a crash cart had to be brought in. Luckily, they were able to reduce my heart rate with a medication called Adenosine and no paddles were needed.

After days of tests coming back normal, including an echocardiogram and a CT scan to rule out a pulmonary embolism, the medical doctor decided to check my cortisol levels again. Sure enough my hypothesis was correct! My adrenal glands were failing again. He explained to me how lucky I am to not have died during surgery since I did not receive a loading dose of steroids.  

Lastly, it is a life-threatening condition that I will have to manage for the rest of my life. For example, when the body is under stress (e.g. fighting an infection or during surgery), this deficiency of cortisol can result in death. During those times patients are supposed to double their regular dose or receive a “loading dose” through an IV. I had neither before my surgery because I had the “all clear” from my previous physician.

I am grateful to have an answer as to why I had such severe symptoms. Getting news that you have a life threatening condition is never easy, but it at least validates the fact that I have not been well the past 6 months.

I hope you learned something interesting from this post. Follow me on Instagram for more information @chronically_juliann

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

One Year @ CHRONICALLY JULIANN. FAQ VIDEO!

Welcome to the blog! I am celebrating ONE YEAR of Chronically Juliann. What a year it has been. At the inception of this blog I was in the middle of a month long stay in the hospital. I was admitted for severe high ostomy output that was dehydrating me. Upon discharge I had a mediport that would sustain my life for the next 9 months. IV fluids, TPN, and frequent rounds of antibiotics became necessary to survive. My strength dwindled rapidly until I required a walker. In an attempt to get a diagnosis and accurate treatment we moved to California. Leaving our home in Alabama during a pandemic was frightening. But I was properly treated for CDiff and improved greatly over several weeks. I still am struggling with IBD symptoms, but am managing it on an outpatient basis. I no longer suffer from chronic dehydration. I even got to have my port removed! I am truly enjoying life in a new way now.

One thing I strive to do with this blog is teach about ostomies, give advice about living with chronic illness, and offer my perspective on overcoming hardships. In order to continue teaching I have decided to start vlogging again too!

Today’s video answers some of the most frequently asked questions I get about an ostomy (by way of my best friend Chloe.) I hope you learn from it, whether you are someone who is getting an ostomy in the future or someone just wanting to learn about a weird medical thing.

update Day 10 postop

Today is day 10 in the hospital. It has been a lonely experience, since COVID19 restrictions do not allow friends or family to visit. I have had to advocate for myself, which can be quite challenging while you’re in so much pain and on multiple medications. I am grateful for my nurses who have come along side me and helped me talk to the doctors about my pain/anxiety.

Part of the reason I am still admitted is because I’ve had some major set backs and my pain is still high. However, the bigger problem is my heart rate is uncontrolled. We’re talking really uncontrolled. Most of the day I am tachycardic, with a heart rate of 110-135. The worst experience was when I passed out due to my high heart rate and landed directly on my butt (which if you don’t remember is my surgical site.) To say it was excruciating would be an understatement. In another episode, I was at complete rest and my heart rate jumped up to 180.

This prompted my nurse to call the “Rapid Response Team”, which is a group of nurses and doctors who run codes in the hospital or assist in acute crises. It was very overwhelming to have eight nurses and two doctors run in and immediately start barking orders. Everyone had a specific job during the event, so I knew everyone was necessary to be in my room, but it was extremely nerve-wracking as the patient. Multiple people screamed “calm down” at me, which is literally the WORST way to get someone to calm down.

Thankfully, after a dose of adenosine and lots of fluids, my heart rate came down to the high 90s. Although my heart rate improved, there were still a lot of questions to be answered. Most importantly being “why is my heart rate so high at rest?”

In response, my doctors ran new blood work, performed an echocardiogram, and got a CT scan to rule out a pulmonary embolism. Luckily, the imaging was all normal. But the blood work showed that I am in adrenal failure again.

My attending physician was extremely worried when he received my blood work results; he explained that normal range for this cortisol level test is between 6-10… mine was 1. This means it is nearly undetected in my blood stream.

The adrenal glands are located just above the kidneys and consists of two parts. The outer portion, called the cortex, produces cortisol. This is an important hormone for controlling blood pressure. The inner portion, called the medulla, produces the hormone adrenaline (also called epinephrine). Both cortisol and adrenaline are released in response to stress. Because my adrenal glands are not working properly, the stress from the surgery ultimately caused me to have an acute adrenal crisis.

Other symptoms that occur because of it are severe tachycardia (check), chronic weakness/lethargy (check), severe pain throughout the body (check), vomiting/diarrhea (check), inability to regulate body temperature (check), irritability/depression (check), and worsening anxiety (check)!

Earlier in this post I stated I was in adrenal failure “again”, which means this is not the first time I’ve been treated with steroids for this problem. I was on steroids daily for almost a year, then was given the all-clear by my endocrinologist this April. I stopped taking the steroids as recommended by my doctor, but unfortunately, this was not good advice. Based on comparison to the lab work from April through now, it is apparent my adrenal insufficiency never improved.

As for now, I will stay in the hospital and receive steroids/fluids until I am healthy enough to go home. I am still recovering from surgery, too, so I will be resting a lot.

My enchanted 28th unicorn birthday ♡

This has been a hard year with a lot of pain and struggle. But it also has brought so much adventure, change, and perspective too. Part of our reasoning for moving to California was to have my family support system closer. We have really leaned on each other in this season and it has brought us closer.

I wanted to bring my immediate family together to celebrate my birthday. I wanted to have something simple, yet fun. I wanted a party with a cute theme and lots of games. So I decided on a 🦄 unicorn theme party! It is so popular right now I knew I would be able to find inexpensive decorations and games. I was right… thanks to the Dollar Tree, Target’s low prices, and some thrifty repurposing of things the decorating was cheap and easy.

I started by selecting an inexpensive, plastic, colorful tablecloth to cover my coffee table with. I threw some confetti on the table and suddenly the room was transformed.

Most importantly on this table are my goodie bags. I included unicorn trinkets, toys, puzzles, lipgloss, pens with huge puff balls on top, and a new fashionable mask in each bag. (Hello pandemic safety!) I made the bag even more special by writing every person invited a card thanking them for their influence on my life.

I found a few fun games to play but wanted more activities to cover the whole party. So I decided to have a name tag station at the entrance of the party. Only guests wrote down their ‘Unicorn Name’.

I made a list of random words related to unicorns to create funky names. Truthfully it was harder than I thought to create this document. I wanted every possible mixture to make sense or be cute. Some of my favorites were mine Enchanted Mythical Dreamcatcher and Will’s Whimsical Wild Myth. ☆

My niece with her unicorn name

I purchased a cake with sparkles and added these adorable, glitter candles. However, I did not light them as to avoid germs on the cake.

I also found this adorable piñata from Target. I had so much fun picking out eclectic pieces to keep with the unicorn theme.

Our charming front yard served as a perfect backdrop for photos, dining, and games.

I purchased the game “Unicorn Ring Toss.” We laughed for a ridiculous amount of time during this game. There is something so entertaining about looking ridiculous.

The goal of the game is to get the 3 rings on the other persons horn.

I am so thankful for my beautiful family. I am impressed with their positive attitudes and joy. It was a treat to celebrate with them.

Deadpool unicorn brother in laws

Thank you for every person who wished me a happy day. I am starting 28 feeling stronger, more powerful, and more unique than ever before.

What’s in my bag?

They say you can tell a lot about a girl from the contents of her purse, I have to agree! If you searched through my purse you’d discover I have an obsession with lipstick, often carrying more than four shades at a time. My family tells the story that by the age of 6 I would carry a purse filled only with ridiculous amounts of lip glosses and flavored chapstick. (I obviously had my priorities right as a kid.)

If you looked through my purse you would also discover that I am an ostomate, the term for someone with an ostomy. I carry a small bag with the essentials I would need for an emergency change. Having this bag handy has saved me from some embarrassing moments. Not having it has also cost me… Although accidental bag leaks aren’t common daily, they do happen often enough to warrant needing extra ostomy supplies with you.

I carry several types of ostomy bags with me for different reasons. Most importantly is that your ostomy will not behave the same every day and in every situation. You may need to view your stoma for a doctors appointment or when sick, therefore a transparent bag is more fitting. You may want a petite bag for under the great dress you bought!

Find out more about what is in my emergency ostomy bag in my new video.

Things I carry in my ostomy bag that were not included in that video include an ostomy cover, a small quantity of my medications, and medical grade scissors.

Dressing for a changing body

A big fear for me when I was approaching ostomy surgery was whether or not I would find myself attractive after. I had struggled with body dysmorphia for most of my life and was concerned I would hate my stoma and ostomy bag. I feared having new scars.

It was a welcome surprise when I realized I felt more comfortable with my body than I ever had before the surgery. I celebrated my body and all it had accomplished. I found beauty, strength, and hope in my scars.

One thing that did have to change, however, were my clothes! I could no longer wear tight fitting shirts across my stomach. I felt uncomfortable wearing constricting pants around my waist for months after surgery.

Even though I felt confident in my body, I felt self-conscious about my wardrobe.

I started researching ideas on styles of clothes that would not accentuate my abdomen but would still show off my curves. I found that high-waisted pants were best at this. Honestly, paired with a really wide and sturdy pair of high-waisted underwear my bag disappears. For the first two months post-op I only wore yoga pants with a sturdy waistband. Slowly I was able to start adding jeans and tougher materials. But for the benefit of covering my bag I have continued to purchase high-waisted only.

If you are experiencing a change in your body, I encourage you to embrace it. I have experienced weight changes throughout quarantine. With adjustments in my styling (and attitude) I have not feared the weight gain. I have finally reached a place of self-confidence and empowerment.

If you are shopping for new styles after a change in your body, I suggest you try on lots of different outfits and combinations. I started choosing items I had never picked before, like crops tops, and loved them. I now own several. I have grown to be comfortable enough to let my ostomy bag show. I dare you to be courageous and bold in your looks too!