How I’ve Dealt with My Diagnosis
In August 2014, I had a traumatic, life-saving emergency surgery. The last-minute nature of the procedure left me horrifically constipated. I had a 12-inch incision across my abdomen which made it impossible for me to physically move things along. I had never been constipated before. I was in SO much pain and discomfort and terrified that the pushing that came with trying to pass the blockage would rip open the incision in my belly.
I had always had issues with my bowels, but after the constipation was resolved, I was left with more concerning symptoms that left my mind swirling with devastating possibilities. I was going to the bathroom over 20 times a day. I had blood and mucus in my stools. Food was passing through undigested and there was leakage that left me uncomfortable and embarrassed.
After dealing with those symptoms for over a year, seeing them progress to a point I could no longer ignore and push aside, I sought out help from my GP. She referred me to a gastroenterologist who didn’t even examine me. He told me I needed to eat more fiber and that I’ll be fine. He ordered a colonoscopy, but re-scheduled the procedure every month for over six months. The last time he tried to re-schedule, I told his receptionist that I was leaving his practice to find someone else who had time for me. I finally went back to my GP and asked for her help. She sent me to another GI. This one was old-school, but I still left that appointment with a modicum of comfort after he said my symptoms weren’t necessarily dire, and that adding fiber to my diet was the exact opposite of what I needed to do.
Soon after, I had my first colonoscopy and endoscopy. Two days later, my GI called back with a definitive ulcerative colitis diagnosis. While the thought of having a chronic illness that would follow me around my entire life was concerning, having an official diagnosis and a game plan brought immense relief.
That old-school GI was overwhelmed with patients in a massive medical group with not enough other GI resources to run a functional practice. He initially put me on a drug called Lialda that left me vomiting for close to two weeks. I lost so much weight and couldn’t function. I called his office every day with no response. I got increasingly angry after being ignored by two GIs and getting increasingly sicker. I finally got in touch with him. He apologized for “being too busy” to respond to my messages. He prescribed me prednisone and I never heard back from him again.
After that, I knew I needed a new doctor. I left the massive medical group I was with and researched others in my area. Because of the healthcare system, it took forever to get my records transferred. I eventually had to go to each and every doctor’s office I had records at and ask for my records to be physically turned over into my own hands as they had neglected to electronically send them per their protocol.
I was on prednisone for over 9 months. I became dependent on it. I gained over 30 lbs. I had the moon face and developed a buffalo hump at the base of my neck. I was in ROUGH shape.
At the exact same time as my UC diagnosis, I was also told I was infertile and would never be able to get pregnant without significant medical intervention. So, not only was I reeling from the fact that I will be sick for the rest of my life, I had to deal with the grief of infertility. I became lost in a deep, dark fog of grief and depression that lasted a good two years. It brought on anxiety and I was also dealing with PTSD-like symptoms from the traumatic surgery that started all of this in 2014.
I eventually found a new GI who specialized in UC and soon started Humira. I was in remission within a year and have remained flare-free for over a year now. It has not been easy but I am SO thankful for the care my current GI has given me. He takes all the time I need to explain my situation and my worries. He is prompt in replying to phone calls and messages and works quickly to give me the medical attention I need.
My journey has been made bearable through a few different means. The main one is my support system. My faith in God has held me up, but in the deepest moments of pain and discomfort, I have struggled to see His goodness. When that happens, my husband has been diligent to point me back to the Truths I know. He never signed up to be hitched to a sick wife but he has never looked back or wished for something else and often tells me he could never imagine another better life.
Another help in times of UC craziness is humor. If you can’t laugh about pooping your pants, you’re going to have a really hard time dealing with this disease. I had to learn how to pack some supplies and carry them with me at all times. I carry baby wipes, a baggie, Poo-Pourri, hand sanitizer and an extra pair of underwear at all times. I had to ignore my sense of pride and buy adult diapers in order to take long road trips without the overwhelming anxiety of an accident.
I also learned to talk about my disease openly. Everyone around me knows that I fart. Everyone knows that sometimes I can’t eat certain things. Everyone knows that I will appreciate a good poop joke. If I have an accident, I text my husband and we laugh about it. None of this is my fault and there should be no shame. Sh*t literally happens. I can’t avoid it, so I embrace it!
Another tool I’ve utilized in my new life with UC is networking and making connections. I’ve inundated my social media with groups and followers that deal with the issues I deal with. It’s so wonderful to have other people to commiserate and to laugh with. When I was on prednisone for 9+ months and gaining 30+ lbs, I turned to a Facebook group for insight on how to deal with the cravings, the rages, the sweating. They urged me to seek out better care for myself, leading me to finding the GI I am with now. They welcome any and all poop memes and jokes I find. And I’ve been given the opportunity to share my story and help others!
Being open about my disease has lead others in my personal life to open up to me about their own illnesses and worrisome symptoms. I have been able to comfort them and urge them to seek out help. I figure everything in my life happens for a reason and I can either let those reasons lay fallow or I can use them to not only help myself, but others, as well.
My journey with UC has woven in and out of many hard moments the past three or four years. I’ve had to adjust so much of my life to accommodate everything that comes with this disease. I’ve also added an additional diagnosis of arthritis to my bevy of diseases. I am blessed to have access to amazing insurance and a number of specialists who treat me like a human and care for my body and my mind, as well.
To top it all off, this summer I became really ill. I got terribly sick at work one day with flu-like symptoms. When I got home and took my temperature and realized it was 102.6, I had my husband take me to the ER. I knew not to mess around with fevers and UC.
What resulted was 5 months of multiple hospital stays, numerous medical procedures and SO many blood tests. A massive infection was found in my pelvis stemming from a fistula from my colon. I had a drain inserted that came out of my belly and emptied into a bag that hung from my underwear. I had a PICC line in my right arm and had to drive 7 miles every day for an hour-long infusion of IV antibiotics. It was getting to the point that surgery was imminent. The infection had gone away, but the fistula remained open. I asked my doctors to give it two more weeks to heal up. In that time, I asked my community of support to pray for a miracle. My husband and I were DAYS away from becoming licensed foster parents and surgery would delay that process. So, HUNDREDS of people prayed diligently for me for two weeks. And when I went in for my final drain check before surgery was decided on, I became proof of a miracle. The fistula had closed up. The doctors were baffled and surprised. I told them of my faith in a God who still works miracles and hears the prayers of His beloved. I walked out of that hospital that day sobbing, overwhelmed by God’s goodness.
I am just now starting to seek out help for my mental fitness. I was so over-inundated with doctor’s appointments and medical care, all the while working as a nanny to two little girls, the thought of adding one more appointment to the mix was too much for me to bear. And with the added burden of being a foster parent, I figured now was the time to start caring for the other aspect of my health that needed attention. I have endured a lot of medical trauma in the last 4 years. I have endured loss and grief that should have done me in. But I am still here. And as long as I am able, I will tell this story.
Caitlin is a blogger, crafter, dog mom who loves chocolate, the Golden Girls and all things dinosaurs, robots, hobbits, and potty-humor. She lives with her husband and two dogs in Chicago.