Review other blog posts from this series here:
Ulcerative Colitis, one type of inflammatory bowel disease (IBD), is an autoimmune condition that causes inflammation and ulcers in the large intestine, or colon. It is associated with symptoms of extreme abdominal pain, bloody diarrhea, numerous trips to the restroom with little to no control of bowels, nutritional deficiencies, chronic fatigue, fevers, and joint pain. 18 years ago, as a senior in high school, I was sentenced with this diagnosis, and it changed my entire world. Everything I knew about life and all of the plans I had in mind for it were forever altered, and I had no say in it. I was extremely scared and incredibly embarrassed to talk about it. For the longest time, I buried my head in the sand and wanted to give up.
For years, IBD disrupted my life day-and night-with symptoms. I spent most of my days tucked under the covers too weak to do anything at all. Life consisted of hospital visits, appointments, blood transfusions, debilitating fatigue, tons of pills, receiving nutrition through an IV, and a multitude of emotions-isolation, frustration, depression, anxiety, anger. All of the simple pleasures I had once taken for granted felt so far out of reach-instead I was just trying to reach a bathroom. Ulcerative Colitis for me felt like swimming upstream every moment that I was awake.
Fast forward 12 years later and every treatment, every special diet had failed, and I never went into a period of remission the whole time. My doctors had suggested a colectomy after several years, but I had declined. I was a 20-something old female and I refused to have an ileostomy bag on my side-even though temporary. Fast forward again, and after a brush with death, I finally waved my white flag. Take. The. Colon. I spent my last weekend with my colon dismayed, crying, sleeping, and running to the bathroom countless times. When surgery day came, I courageously went in with no tears, just hoping that I would feel relief from pain and be able to live life again. I woke up with a temporary ileostomy, and getting used to it was one of the hardest things I will probably ever do, but for the first time in 12 years, it gave me my life back. I did not have to live in constant fear and anxiety of where the bathroom was or when my pain would come back. The ileostomy was eventually reversed, and I have an internal ‘J-pouch’ (ileoanal anastomosis) which allows me to use the bathroom normally. I am now living the most normal life possible. I go on trips, go out with friends and family, and can stand in the middle of a field with no restroom for however long I want.
Inflammatory Bowel Disease is a thief. The anxiety drains you of hope. It steals many things, but I found that having a positive mind is the most important virtue to one’s wellness. Staying in a negative state of mind will eat you alive. Every day is a gift. At the time of diagnosis, I had no support system other than family and friends, but let’s be honest-they had no clue of the inexplicable pain and symptoms I was feeling. I researched and found that there are many resources on the CCFA (Crohn’s and Colitis Foundation of America) website for patients who simply need to read others’ stories of their struggles with IBD just to know that they are not alone. In addition to reading the stories of others, I have met other IBD sufferers and have been able to offer support and encouragement that I know is valuable. For years I was caught up in so much sadness and anger, but in order to get through it, I had to grieve what I had lost and continued to lose. Once I was able to let that sink in, I allowed myself to grieve the me that I was before it all happened, and my emotional health began to improve. I progressed toward acceptance. I didn’t live with Ulcerative Colitis; I lived despite it.
My case was certainly one of the extreme cases. This is not a one size fits all disease, but whether your case is mild or severe, it is so important to take care of yourself and advocate for yourself. My urge to anyone struggling with IBD is to share everything that you experience (physically, emotionally, mentally) with your physician. They need to know about all aspects of what you are going through. As uncomfortable as it can be to talk about, open conversations with your doctor create an effective alliance that greatly impacts the management of IBD. Ultimately, be patient with the process of adjusting to your life with IBD, allow yourself to feel emotions, and be gentle on yourself. You will get through this whatever it may look like!
If you have a digestive disease or deal with GI symptoms interrupting your daily life and would like more support, Avance Care is starting a free, quarterly support group for people with a variety of GI conditions. Join the support group email list by filling out the interest form below and someone will be in touch soon to get you started.