Lauren’s Autoimmune Story

MEET LAUREN

My name is Lauren Johnson and I was diagnosed with Ulcerative Colitis in October 2018, although that does NOT define who I am.

I am a woman who married the most incredible human being on this planet, on March 17th 2017. We bought our first custom built home in January 2018, and moved in after construction was completed in July 2018.
We are the ‘faunt ’ and ‘funcle’ (fun/favorite aunt and uncle) of two beautiful girls, and two handsome little boys.

Our favorite pastime is Hockey, and we are die-hard Detroit Redwings fans, even though we reside in sunny Arizona.

In August 2018, I made the conscious decision to change my career path and found an environment and an employer who shared my values, and most importantly valued me as a human being. Talk about a leap of faith. A month after closing on the biggest financial commitment of our lives I left my job of 7.5 years. My only regret is that I didn’t do it sooner.

I have an incredible job that I love, as a Production Director of a Chick fil a. I lead a team of diverse people from all walks of life that come together to deliver the best product for your experience.The passion I have for my job grows everyday, and it’s fulfilling in so many different personal and professional ways.

 DIAGNOSIS

In late July/ early August 2018, I was in the best physical and mental health of my lifetime, or so I thought. About the time I was leaving my old job and transitioning to Chick fil a, I began experiencing blood in my stool. With time, it kept getting worse, but since I was so healthy, I chose to ignore it.

For the next two months, the sense of urgency and number of bowel movements increased as did the amount of blood. Maybe I wasn’t so healthy after all? I caved, admitting my concern to my husband. We scheduled an appointment with a GI doctor, and I was finally seen in office in late September. The doctor decided to perform a colonoscopy, and sent me to the scheduling department. I was told I had to wait a month and a half to have this procedure done. By the time we got back to the car I fully broke down. I physically couldn’t wait that long because I was in such indescribable pain and frankly, absolutely terrified by this point. I had taken photos to show the doctor, but since I’m the type of person to downplay my symptoms and pain, I didn’t think it was that serious, so I didn’t show him. I was inconsolable, and we ended up going back up to the office and showing the photos of what I was actually dealing with to the doctor. He scheduled me an emergency colonoscopy on October 9th 2018. (Due to the severity of the situation, I totally forgot was my husbands birthday… oops)!

Since I had been transitioning jobs, I was not covered by any insurance for the colonoscopy. We had to pay $6,000 out of pocket. We were out of options at that point. My husband found me insurance for the 6 month period until I was eligible through my new employer.

The findings of the colonoscopy came in a few days later, Colitis. (Not UC, just colitis). The doctor had given me a number of suppositories, prescription enemas, and a round of steroids.

I continued to work full time and just hoped that the medicine would work and I would be fine. Spoiler alert: I wasn’t fine. Employees began to notice the grimace of pain shining through my smiles. They saw the small tears, not the tears you cry, but the tiny ones that come out when you’re in so much pain that your eyes water. They saw me sprinting to the restroom while praying one of the two stalls were available. On my birthday, October 24th, I ended up leaving work early because of the horrific things that were going on with my body. I began to get weaker, more sick, even though I didn’t think that was possible.

I had multiple trips to the ER, and was admitted to the hospital on October 27th. It was then that after another CT scan they deemed it as ‘left sided Ulcerative Colitis’. I had to joke with the ER nurse who was taking my stool sample that no, it in fact was NOT a Halloween prank… and the things she was about to see actually came out of my body.

We spent 7 nights (including Halloween) in the hospital, and were released on November 2nd with not much progress in healing. They basically let me out because I had an appointment with my GI doctor in two days, and I would be more comfortable at home.

This is where my story takes a strange turn.
At the appointment with the GI doctor, he did some blood tests and prescribed me an immunosuppressant. I began taking this medication, with the only advice of my doctor being “this is a slow acting medication so don’t expect quick results.” I fully take responsibility for not researching what I was putting into my body, but under the circumstances I based it on trusting this man that I’ve met twice. Little did I know this decision would endanger my life. Over the next 2 weeks, I continued to get more sick, too weak to get off of my couch without help. Multiple trips to the ER in search of any relief, most of which were futile. I did have a bout of kidney stones on top of everything I was going through, because, surprise! They go hand in hand with UC, I found that out the hard way. I began having high fevers, 103-105 degrees.

I had stopped eating, and even water was making me sick. My body was in full starvation mode , desperately dehydrated and suffering in pain. My caregivers were trying everything in their power to find something, anything, that I could keep down to no avail. We all decided that in the morning, we would be going back to the hospital for what felt like the 87th time in a few weeks. After being stuck downstairs on the couch for two weeks I begged my husband to help me upstairs so I could sleep in our bed.

That night, I woke at 1am to use the restroom which, thankfully, is about 4 steps from my husbands side of our bed. While approaching the bathroom I got that total body feeling where everything tingles, and your vision gets dark. I knew I was going to go down so I tried to grab on to the toilet as to not fall backwards. I ended up passing out before I could reach my destination and hit my head on the wall, and was out cold. My husband immediately sprung out of bed (already on super hubby mode for weeks, so he was too worried to sleep). I was unresponsive for almost 5 minutes. I was semi-conscious for a brief time and could hear, but could not open my eyes. All I heard was the sheer panic in the voice that was always so cool,calm and collected. I later woke up to medics and fire fighters in my bathroom, unaware of what happened. They took my vitals, my blood oxygenation was low, my blood pressure was slightly low when I was lying down, and dangerously low when I sat upright. They started an IV , and before we even left the bathroom I was given 2 bags of fluids, and 2 more in the first ambulance.

First ambulance? Yes. The first ambulance took us to a stand-alone ER because it was closest to our home. They had none of my medical records, so they had to do all of the labs and CT scan again (my 6th CT scan in 2 months). When my bloodwork came back, the ER doctor was insistent that we get transported to the Hospital immediately.

In ambulance number two, they explained that my white blood cell count was alarmingly low, at .09. (Normal counts range between 4.5-10).
We were transported and admitted to the telemetry unit of the same hospital that I had been in back in October.

For the first few days, I had a team of about 10 doctors ranging from GI specialists to infectious disease, oncologists, we really couldn’t keep track of them all. No one seemed to know what was actually wrong with me. I was on contact precautions so everyone entering the room had to wear complete gowns, gloves, masks and hairnets. I was a fall risk, and was not allowed to get out of the bed unattended (which wasn’t that awful considering I only needed to get up to frequent the restroom).

They knew I was severely neutropenic, anemic, septic, but had no idea how I had gotten to this fragile state. Not much progress was made in the first 5-6 days. I was still suffering from high fevers, a serious UC flare and my blood levels kept dropping. I could not eat, I could only take short naps due to being woken up every 2 -4 hours for medicine, more blood and other testing. I was given 2 blood transfusions, which did not produce any positive result. By this time I had lost over 35 pounds, the sparkle in my eyes, and the majority of my fighting spirit.

It must have been around day 8-10 when they sent me for a bone marrow biopsy. The biopsy revealed the cause of the illness. I was having a severe genetic reaction to the immunosuppressant medication I was taking. They immediately stopped giving me the medication. A few days after they identified the issue they began to treat it with a medication that was administered by shots into my stomach. This medication was supposed to help my body jump start the process of increasing the cell volume of my blood to get my cell counts back up into a safe range. Between that medication and additional blood transfusions I eventually got up into a stable range. They stopped the shots to my stomach, and monitored my body’s ability to keep the cell count up unassisted.

I began slowly phasing in clear liquids, liquids, and soft foods. My skin began to turn more ‘human’ colored, as opposed to the pale gray tone I had been sporting for the last 3 weeks.

We were officially on the upswing!
I had to complete some physical therapy while in the hospital, in order to get up the strength to walk with the aid of a walker.

Eighteen long days since I was admitted to that hospital, they cleared me to go home on December 5th 2018. I spent both Halloween and Thanksgiving in the hospital, but I would be home for Christmas. Since leaving the hospital, I’ve not been on any GI related medication. I am not in remission but I am able to manage my symptoms without biologics, immunosuppressants, or infusions.

 LIFE CHANGE

Having an autoimmune disease impacts more areas of your life than you can imagine, as well as everyone in your immediate support circle.

Let’s talk about Pre-diagnosis me for just a moment. In 2017 I found a passion for fitness, and it became a great hobby for me. It helped stabilize my mental health just as much as it helped my physical body. I spent at least an hour a day before work at the gym, and on the rare occasion I would have a day off, I would end up not realizing that I would be working out for 3-4 hours sometimes. I loved eating raw vegetables, fruits, nuts, whole grains, high fiber and high protein diet. Now, those things are legitimately all on the foods to avoid / high risk list. It’s still a learning experience. Some days I can eat a meal that I’ve been eating on a regular basis and deemed as ‘safe’ and still get thrown into a mini flare without cause.

Because of my age, and my physical health, I was not treated with the same care as someone who may have looked more sick, or had been older. This resulted in some oversights during my hospital stay. As an example, for 18 days I laid in a hospital bed, I was only given compression socks / preventative care for blood clots two times. Both times were for under 2 hours.

I left the hospital with a lower right leg DBT unable to walk for more than a month. I now have to have special precautions with any future procedures because if I develop another clot, I will be on blood thinning medication for the rest of my life, although the initial blood clot was 100% preventable. In addition to that, I am still dealing with a misdiagnosed fistula stemming from the same hospital stay. I’ve had two surgeries in the last year in an attempt to eliminate the fistula. The first surgery was not successful. I’m currently recovering from the second (more invasive) surgery, and am optimistic about the results.

Also, we didn’t realize that being sick was
SO. FREAKING. EXPENSIVE.
This illness took a toll on our financial health. The interim insurance ended up only covering a fraction of the bills that were piling up. Our final out of pocket bill for everything totaled at around $220,000.

$220,000?
My immediate thoughts:
Sure, would you like cash or card?
Just kidding. We just bought a new house, remember? Would we have to give it back? Why did this happen to me? We will never recover!
The reality of the situation: my husband diligently worked to apply for grants through his (large corporate) workplace, which we qualified for. He refuted claims with the hospitals, insurance, did a bunch of fancy finance work and by 2019 we made a settlement with the hospital. Our final bill was reduced to $26,000. Once the first check we sent to the hospital had cleared, the bill was then reduced to $16,000. (No, we defiantly didn’t send a $10,000 check, we aren’t really entirely sure how this happened, the answer we were given from the hospital was that it was a clerical error / overcharge on their end).

My husband and I have gone from worry-free 20 somethings to people who have to be strategic about using our sick days, and get creative with work. We no longer have “fun funds” to save for vacation, we have “just in case, well, not really ‘in case’ you get sick, but WHEN you get sick’ funds. We’ve always been financially stable, but this is just another level of really managing to make sure we are doing all we can for a future that’s completely out of our hands.

As I mentioned above, you can see how much bigger this diagnosis is than little ulcers in my colon. My husband has been affected just as much, if not more than I have with my diagnosis. You never think this will be your reality. You don’t plan on holding your wife as she’s unresponsive, begging her to please wake up. You don’t think you’ll have to helplessly watch as she physically deteriorates before your eyes. You don’t think that doctors will be asking you to arrange the medical power of attorney and living will because they can’t figure out how to make your wife better. Those events were something that we did seek professional help for. He successfully completed EMDR trauma therapy and has grown from this life changing experience.
Trust me when I tell you that I’ve gone through more than my share of therapy as well, but I’ll touch on that topic in more detail below.

 HEALING

As I mentioned above, I’m currently not on any medication for UC. I’m not in remission, but I’m not experiencing any large scale flares. (Knock on wood). I attribute my colons health without the use of traditional medication to religiously doing yoga, dousing myself in essential oils, eating a balanced gluten free / vegan / organic non GMO diet, juicing 3 times a month, burning a bundle of sage in all of my bathrooms each week, aligning my chakras, getting some natural vitamin D from the sun, exercising every day, and using only metal straws.

Just kidding. Sorry for poking fun of any of that (some of those things I actually do, and that’s awesome if they work for you). Honestly, I have NO idea how I’m able to be med-free (currently). I’m a normal person out here trying to navigate how to live a normal life with a chronic illness.

Depending on the day, I do experience a decent amount of symptoms most commonly including: fatigue, nausea, blood in stool, brain fog, joint pain, and overall feeling like garbage some days.

What’s my secret? Resting.

The most important thing I’ve learned on this journey is energy conservation. If you are recently diagnosed, or are a caregiver for anyone with a chronic illness and haven’t read “The Spoon Theory,” stop reading this article and google it (seriously, go read it).

Great, now that we’re all caught up, I can continue!
This story has been so helpful in my everyday life. Until learning more about the other symptoms IBD can manifest itself as, I was my harshest critic. I would push myself to do things because I thought my new normal was LAZY. I pushed myself beyond the limits of my body in the attempt to do all of the things I could do before I got sick. I thought if I just tried harder I could get better. (No) Shocker: I was wrong.

I have a chronic illness, and that means that I have a finite amount of energy, and I have to be mindful of how I spend it. I have to make responsible decisions regarding physical activity in order to work full time, and still have time and energy for my personal life. Once I accepted that, I was able to let go of that guilt or shame I felt for being my new “lazy” self.
Resting is a conscious decision that plays a major role in energy conservation. Resting is healthy , especially when your body is telling you that’s what it needs. Whoever needs to hear this : YOU’RE NOT LAZY, YOU’RE BEING RESPONSIBLE.

Other things are helpful too, like quality toilet paper, heating pads, fluffy blankets, binge watching, electrolytes, panty liners, hemorrhoid cream, knowing where the nearest bathroom is at all of your destinations, and having no shame in whipping your bare booty out during all of your doctors appointments. (Seriously, the amount of people that have to look at your butt is pretty entertaining, so get used to it).

 STRUGGLE

“When I was diagnosed, I didn’t know how much my life would change. There’s no conversation about that foggy space between the common cold and terminal cancer, where Illness won’t go away but won’t kill you. So none of us know what ‘chronic illness’ means until we’re thrown into being sick forever.” -unknown

Since my diagnosis, we’ve done a LOT of crying here in the Johnson home, tears of all types. Some came from physical pain, from reflection, from grief, uncertainty, fear, gratitude, joy, and what feels like every other emotion that exists, and even some that don’t have a name.

The thing I struggle the most with is the mental aspect of this entire situation. This process is so cyclical…like a figurative game of whack a mole. I feel like every time I get a handle on it, the mole pops up again, and again no matter how hard you whack it.

I had a recent experience during my last surgery that will hopefully help explain what the hell I’m trying to say.

“I’m recovering from an extensive colorectal surgery. We’ve had some complications that sent us to the ER a few times, and it was there when I had a profound realization. My husband and I were mid prayer, while we heard a person cry out vividly expressing their agony. I too, began to cry because I was so very thankful that God chose ME to have this disease. To constantly endure illness and pain with just the ability to manage, not the ability to cure. I have the strength to handle this. I was happy.
About an hour later, as the second patient in the bay next to us was being discharged, my anxiety began to increase. I knew it was coming…A few moments later, the doctor walked in and said those dreaded words: “We can’t see anything wrong, in fact, your latest scan looks better than the one we did last week in the ER, and we’re getting your discharge information ready.” About halfway through his statement the floodgates opened again, and I was ugly crying, this time in a very deflated and sad way as I muttered “Ok, thank you.”

For those of you reading, you’re probably thinking ‘how can you be crying when he told you nothing was wrong?’ (Frankly, I’m crying because I’m a hot mess already, but let’s just let that go). For those of you with [or caring for someone with] IBD, this is all too familiar. Being told that nothing is wrong is the outcome you think you want, unless you’re suffering through this invisible illness. You’re in so much pain that you feel like you want to quit, and you are begging for someone to give you a tangible reason as to why you feel this way. But, that’s usually not the case.

It’s the equivalent of being a human balloon, in the sense that you get yourself so blown up with positivity and strength and grandiosity, flying high…But you don’t see the shiny sharp needle of the “I don’t know” that you’re about to be deflated by. “

To put it frankly, I was betrayed by my body. I lost the ability to start planning a family on my own terms. Most of all I lost the feeling of ever being safe in my own body again, for fear that it can turn on me at any moment. I grieve these losses, I’m not over it. At times I resent this illness. I’m self aware of the fact that I’m angry over something that was completely out of my control.

I am the type of person that believes everything happens for a reason. I lost so much, because I was only thinking of the things I’ve lost. But what if we look at the other side? The side of gratitude.

Because of this illness I have also gained so much. I’ve gained a reassurance of the absolute strength of my marriage and unconditional love and support of my husband. I’ve gained a stronger connection with my faith. I take solace knowing that I have an incredible support system that will be cheering me on through this fight without fail, and for those things I’m eternally grateful.

INSPIRATION

I challenge you to be kind to yourself.
It’s so important to recognize your small wins and appreciate yourself, because it’s so easy to fall back into wasting your energy on negativity, and my friend, you simply don’t deserve anything less than happiness.

Repeat after me:
Every morning I wake up and I choose to be strong. That doesn’t mean I make it through every day with that strength. I do the very best I can , with what I’m able to give. And that IS ALWAYS enough.

That one came straight from me. So do what you will with it. Write it in your journal or post it on your blog, whatever you do I challenge you to incorporate (more) self appreciation into your life. Future you will write about it in their gratitude journal.

Through this journey, many have asked how I was able to stay so strong. The truth is, you don’t really think about it when you aren’t given a choice. I am resilient. I choose to see this as an opportunity, not a ‘death sentence.’
An opportunity to join support and advocacy groups. To share my story. To raise awareness for others that live at war against their bodies. I choose happiness, and I choose to keep fighting.

Find Lauren | @lorfacee