Hello, there! I’m Samantha and in December 2015 my life was forever changed when I was diagnosed with Ulcerative Colitis (UC). UC is a chronic inflammatory bowel disease that causes inflammation in the large intestine (colon and rectum). Researchers believe UC is caused by a combination of factors that involve genetics, the environment, and the immune system. Symptoms of UC can include diarrhea (often with blood or pus), abdominal pain, urgency to defecate, weight loss, fatigue, and fever. Outside of the GI tract, UC can also affect the eyes, skin, and joints. By April 2016 my disease became so aggressive that it was classified as severe. At that time my disease was also complicated by a very antibiotic resistant infection of C. diff and my health was declining quickly. I was having anywhere from 15-20 bowel movements a day, which mostly consisted of blood and blood clots. Along with that, I experienced extreme nausea and vomiting, fatigue, and sharp stabbing pain in my lower abdomen, which was by far the worst pain I’ve ever experienced.
From April 2016 to July 2016, I spent more than 60 days hospitalized because I was so ill and was losing too much blood. During this time I received multiple blood transfusions, iron infusions, total parenteral nutrition (tpn), a fecal transplant, battled C. diff infections twice, lost more than 30 pounds, and failed all of my treatments which included lialda, prednisone, humira, and remicade. I could hardly eat anything and eventually it was difficult to even tolerate and keep down water. Anything that passed through my diseased colon was excruciatingly painful. It was the most trying time of my life, to say the least. There is no denying that I had truly hit my rock bottom. Physically I went from being a healthy 24 year old who ran half marathons to a frail 94 pounds, unable to walk up a flight of steps. Mentally I was in despair, and many days I questioned if my body would make it. By late July 2016, I had no other option than to undergo a total proctocolectomy, which involved removing my entire colon and most of my rectum. Following my proctocolectomy, I began my recovery with an ileostomy.
I had a second surgery in November 2016 to create an internal reservoir what is known as a “j-pouch” and change my end ileostomy to a loop ileostomy while my j-pouch healed. Three months later in February 2017, I had my third surgery to bring down my ileostomy and connect my j-pouch. Although promising, my j-pouch journey was unfortunately not a successful one. From the beginning, I battled chronic pouchitis and eventually discovered that my j-pouch had prolapsed. I was having 20-30 bowel movements per day, waking up every 2 hours at night, and having constant pressure pain in my j-pouch. It was absolutely devastating. From there I spent nearly 8 months seeing a j-pouch specialist at the Cleveland clinic, who worked very hard with me in attempt to turn things around. After numerous medications, therapies and treatments, it was clear that my j-pouch had failed. In January of 2018 I had my fourth surgery that took me back to an ileostomy.
Being reversed back to an ileostomy was bittersweet. As much as I was looking forward to getting my life and health back, I was also fully aware of the reality of living with an ostomy bag. Living with an ileostomy is not always easy and some days are harder than others when dealing with bag leaks, skin irritation, and bag changes that can sometimes require a lot of time. However, the advantages outweigh the disadvantages when living with severe UC or a failed j-pouch. Connecting with other young women through social media, who also have an ileostomy due to UC or Crohn’s, has really made accepting my circumstances so much easier. I am ever so grateful for the many brave men and women who have shared their stories. I have come across many women on Instagram who have created accounts solely related to their disease and ostomy journey. Seeing their daily struggles, but also their positivity truly makes me feel like I’m not alone.
My battle with illness has made me appreciate the small things in life. Like the ability to eat, the strength to walk, and the freedom to do simple everyday things. The truth is that you don’t realize how debilitating it can be to live without a major organ until you have to. Living without a colon, I’ve had to accept that my body has forever completely changed, however, that doesn’t mean my life can’t be good. I’ve learned to listen to my body, do what I can, and not beat myself up because I don’t have the ability to do everything that I used to. These diseases, ulcerative colitis and Crohn’s, will test everything in your life from your relationships to your strength and faith. My battle with this disease has given me so many reasons to be thankful. During the most difficult times, my heart was changed, my faith was restored, and I was reminded of the thoughtful and caring hearts of so many family and friends. Having my entire colon removed and living with an ileostomy has enabled me to live life again, eat nearly anything I desire, and most importantly, be healthy. Today, my life is so much more than my disease, and I am so grateful for my ileostomy and the life it gives me.