Support Kaitlyn's Inspiring Medical Journey

I am hoping to set up this fundraiser to help out my co-workers very sweet and beautiful young daughter who has had to endure some of the most unthinkable medical trials in such a short period of time, and not to mention, at a very young age. Despite her many challenges, her outlook surrounding her circumstance is inspiring. Kaitlyn has inspired me, and she hopes to inspire others with her story.

As you can imagine, multiple unexpected and recent medical issues and major surgeries, come not only with the cost of your physical, mental and emotional well-being being put to the ultimate test, there has been, is and will continue to be a loss of wages, time away from work, travel expenses and all that surrounds them, etc. for Kaitlyn, and these just name a few.

Please donate and/or share if you are able. We want Kaitlyn to focus on her recovery as much as she is able and to make it a little easier if we are able. Anything truly helps. Please keep Kaitlyn in her thoughts, read the following, and feel free to share her story below, and let’s help Kaitlyn in whatever way we are able as she continues her journey and recovery.

My Story - Kaitlyn Beyer

Hi, my name is Kaitlyn and I am 27 years old. I have had chronic GI issues for years. After numerous attempts to control my chronic symptoms (prescription meds, diet changes, OTC meds, heating pads, epsom salt baths, topicals, specialists, naturopathic routes, etc.) failed, I made the decision to do a double surgery which would include an endometriosis surgery and a colon resection. This surgery was first attempted five years ago and due to unforeseen circumstances, the colon resection did not occur as it would have been a huge risk for infection and complications. These last five years were then spent just coping and trying to manage the chronic pain and symptoms I felt daily. About one to two years ago, my symptoms started getting worse. I was in and out of the ER for abdominal distention, blockages in my colon and volvulus episodes (twisting of your colon). I met with my colorectal surgeon and he ultimately decided my case was too complex for him and the team in Bismarck, so I was referred to Mayo Clinic. Fast forward, I spent the next year completing tests and procedures at Mayo to figure out the root cause of my symptoms. During this past year (2023), I was diagnosed with POTS (Postural Orthostatic Tachycardic Syndrome) and EDS (Ehlers Danlos Syndrome). Both of these diagnoses can come with numerous other complications which can make finding the “root cause” very difficult. While I was undergoing testing, my colon was being monitored and had dilated in size. It started at 8 cm, then in a month went up to 10 cm, then in a week I was in the ER in Bismarck with a volvulus episode, blockage and a colon dilated to at least 15 cm. That night/early morning I had emergency surgery to untwist and decompress my colon. After this occurred, my family and I were informed that I needed to try to get in with colorectal surgery sooner rather than later as there was a concern another volvulus would occur and I would end up having another emergency surgery and possibly end up with a colostomy.

Fast forward a few months, January 2024 comes around and I FINALLY was able to get in to see colorectal surgery at Mayo. I was excited and nervous to see what the outcome of this appointment would be. My husband and I were at Mayo meeting with my surgeon, he informed me that we were unable to find out the “root cause” of my symptoms, but due to the dilation, increase volvulus episodes and the fact that i have very slow motility throughout my GI tract, my husband, mom (via phone), surgeon and myself all agreed doing a subtotal colectomy with anastomosis would be our best route. My surgery was performed on March 19, 2024. I had another double surgery. This surgery consisted of an endometriosis excision surgery (this was new to me, but have had the best relief out of all three of my endometriosis removal surgeries) and subtotal colectomy with anastomosis. The surgery was about 6 hours. Unfortunately, a day or two after my surgery I was already becoming septic and my family and I thought what I was experiencing symptom wise ie: worsening pain, severe discomfort, lack of appetite, loss of alertness/sleepiness and sleepy bowel syndrome were normal “side effects” from the surgery I had just endured. We made the eight hour drive back home to North Dakota. The day we got home, I had help getting settled in my bed, family left and my husband was in the living room. I don’t remember much, except for waking up around 11 pm that night and asking him to check my temperature. My husband and myself recalled Mayo stating if I was running 100.4 or higher I needed to be evaluated. My temp was 100.6, so he packed me up and we went straight to our ER. When we arrived we went to triage. My heart rate was 280, blood pressure was sky high and I was taken back to a room, right away. I had an IV placed and was sent for a CT scan. When they laid me down for the scan, it was one of the most painful moments of my life. I got back to my room in the ER and almost instantly, the room was swarmed with medical staff and the ER doc. This part had to be shared with me because I was so sick I didn’t remember much of these moments or the next few weeks. While we were in the ER, I had an NG tube (nasogastric tube) placed and had over 3,400 mL of stool drained from my stomach in a 30 minute period. My husband and I were informed that I was severely septic, I had a bowel perforation (the connection of my colon where the resection was completed had opened up), stool in my abdominal cavity, stool back flowing into my stomach from my small bowel, peritonitis, small bowel obstruction upon numerous other diagnoses. My husband was told he needed to make the decision on either having emergency surgery completed in our hometown or be life flighted to Mayo (which would’ve taken roughly 8 hours with the snowstorm we had that night). He chose the emergency surgery in our hometown, as he was told if we did life flight me to Mayo, I wouldn’t survive. Surgery took a few hours and I woke up with a colostomy and an eight inch midline incision on my abdomen. Waking up with a colostomy and midline incision with staples, were my worst fears going into this surgery. I was in my hometown hospital for 10 days fighting for my life and just trying to get my body to stabilize after all the trauma. My time in the hospital was touch and go for a while. I got discharged in the beginning of April. One week after discharge my midline incision started opening and I also started noticing more hair loss. Two weeks went by with an opened incision and we were sent back up to Mayo for another emergency surgery as my body was rejecting the sutures used and I had internal openings through my abdominal cavity. My surgeon at Mayo went back in for my third surgery at the end of April, reopened the incision, placed a wound vac, I had an allergic reaction, took the wound vac off, packed my opened incision and brought me back to the OR two days later for my fourth surgery. The fourth surgery was to close the opening, layer by layer. We stayed in Mayo for a week. My husband and I made the drive home and unfortunately, the night we got home, my midline incision was opening again and I was continuing with hair loss. Every step we have taken forward, there have been numerous steps back we’ve taken. I had four major abdominal surgeries in one month and just now got to the point of recovery, three months later and still dealing with complications. My recovery journey hasn’t been easy, as I am now anemic, deficient in vitamins D and B12, Iron, Zinc, Magnesium, Potassium and numerous others. We are now looking at iron infusions and having to be on a supplement regimen because with any type of ostomy some people end up with deficiencies due to your body not properly breaking down and absorbing the nutrients, which seems to be my case.

I thought I had experienced my “hardest moment” but everything that has occurred these past few months has taught me, that life throws so many different things your way and how you handle it makes a big difference. I had my entire life flipped upside down in a matter of seconds from a complication that occurs in about six percent of surgeries. My biggest fear was having a colostomy because I know the stigma around them. Everyday, I fight with myself on if I am still beautiful because I have a colostomy, do people look at me differently, am I still the same person even though I have a colostomy. Truth is, this surgery, these complications, losing my hair, colostomy, none of it will define who I am, because in the end, none of us thought I would survive and I did. Also, my quality of life prior to a colostomy wasn't great. Having a colostomy has already shown me that this maybe wasn’t the road I wanted to take to get to this point, but ultimately, it is giving parts of my life back that I didn’t think I'd ever be able to enjoy. I also came back stronger than ever with a fire in my heart to help change the stigma surrounding ostomies.

By the way, having an ostomy (of any type) also gives you the excuse to wear super cute and maybe slightly inappropriate ostomy bag covers which helps to lighten the mood or situation. For example, my mom bought me one that says “It’s all shits and giggles until someone giggles and shits”. Just always remember, you aren’t alone and when life throws you tough times, lean on those around you, because that is what friends and family are for. It took me years to build up enough confidence to go through another double surgery and have faith everything would go perfect and as planned, unfortunately, you can't always control how things go. I pray that sharing my story will help even just one person.

Thank you.