5 Years With a J-Pouch: Navigating the Challenges and Changes
On February 24, 2014, Brooke Bogdan had her third surgery, which left her ostomy-free. With the reanastomosis of her J-pouch came new challenges and lessons to learn about her body and way of life. Here’s her story.
The question that I have received, and still receive most often on my website, Fierce and Flared, is, “What is life like with a J-pouch?” This isn’t a question I had spent a lot of time thinking about. When I found out I had to have my colon removed because of ulcerative colitis in 2013, I had only three days to process that news. I was more focused on life with an ostomy than I was on the eventual life with a J-pouch.
Five years later, I’m still learning and figuring out what foods and activities help and hinder my body post-colectomy. I think it’s a good idea to break down my life with a J-pouch year by year. It’s important to create positive guidelines and milestones, and I’m happy to share mine here.
Year 1: Surgery Is Not a Cure for Ulcerative Colitis
I was always under the impression that once my J-pouch was anastomosed and I recovered from my final surgery, my life would be completely normal and colitis free. My doctors and surgeon never told me that my life would immediately be normal, but I guess I liked believing that there was a light at the end of the tunnel. I had been through a lot in the previous three years, and I was just ready for a break.
The first few months after my final surgery were rough. The muscle spasms in my rectum were severely painful and caused tenesmus, a continual or recurrent inclination to evacuate the bowel. At the end of year 1, I was going to the bathroom more than what I should have been, and I was bleeding again. I was losing weight rapidly and became dehydrated and iron deficient. I was back in the hospital on iron and hydration infusions. This was confusing for me, as I thought that I had the surgeries to prevent a life like this. I missed a vacation to Nashville with my family and cousins that year and I remember being so disappointed that I had to stay home alone to recover.
After I had been through so much with my surgery series and learning how to care for my ostomy, it was frustrating for me to realize that surgery is not a cure for ulcerative colitis. I knew that I was going to have to let go of the old life that I used to live with a healthy colon and figure out how to take care of my new life with a J-pouch. Realizing that surgery was not a cure for my ulcerative colitis gave me the ability to start grieving the loss of my “healthy” self. My therapist at the time helped me to understand that many chronically ill patients need to take the time to grieve, just as you would if you lost someone close to you.
Year 2: Doctor's Visits and Medication Are an Important Part of Life Post-Colectomy
In early 2015, I met Bo Shen, MD, a gastroenterologist at the Cleveland Clinic. My dad introduced him to me as “THE J-pouch guy.” After my first scope with Dr. Shen I was diagnosed with cuffitis. Cuffitis is rectal cuff inflammation. Cuffitis is uncommon and affects about 10 percent of patients who have a J-pouch. My ulcerative colitis was so severe that it affected my entire rectum as well.
Shen put me back on medications to treat ulcerative colitis: A 5-aminosalicylic acid (5-ASA), which works to reduce inflammation in the intestines, as well as steroids. He also suggested I follow a high-protein, low carb diet, which meat avoiding added sugars, overprocessed foods, anything with too much spice, or anything that was too hard to digest. Once I started these medications and the diet, I began feeling a lot better.
In year 2, I learned that medications and doctor's appointments still needed to be a part of my routine. I had to learn how to begin coping with the fact that this was going to be my body for the rest of my life.
Year 3: Eliminate Stress to Manage UC
By 2016 I finally started feeling like I could function somewhat normally. I had great friends, got a new job at a public relations firm in downtown Cleveland, and was starting to travel more.
As the year went on and work stress began piling up, I started dating someone who had a severe impact on my well-being, both mentally and physically. I fell into terrible habits and was not taking care of myself. I was drinking a lot of alcohol, putting in long days at work, and constantly fighting with my boyfriend. This downward spiral led to a severe flare of my cuffitis and pouchitis.
Before I knew it, I was back in Shen’s office for my annual scope. My J-pouch was in bad shape, so Shen recommended hyperbaric oxygen (HBO) treatment.
By the end of this year I was starting to realize what a responsibility it was living with a J-pouch. I needed to surround myself with positivity for the sake of my health.
Year 4: Surround Yourself With People and Things That You Love
Once I finished my HBO treatments, I felt so much better. I broke up with the boyfriend who was causing me extra stress, left my job, and started school for web development. I worked freelance for a year, and that was the best thing I could have done for my health, because it gave me time for self-reflection and to focus on my well-being.
I had more time to spend with family and close friends and do advocacy work. I made exercise and cooking a part of my daily routine. I started classes at spin, yoga, and barre. I loved boxing before I was diagnosed, so I went back to boxing, too. Boxing is a great way to take out your frustration and anger while still getting in a great workout! I also made it a goal for myself to enjoy running, so I started cross-training and running on the days that I wasn’t lifting weights or at the boxing studio. Completing these difficult workouts helped me stay motivated to eat healthy. I always feel best when I’m eating foods that are high in lean protein (like chicken or fish), and have moderate carbs, sugar, and fiber.
Year 5: Maintain a Routine for Happiness and Health
This year, I’m healthier than I’ve ever been. I work out three to four mornings a week before going into the office. I work in the publishing industry, which I’ve always had an interest in. I’m single and spending more time with my friends and family. My puppy, Sawyer, makes me so happy every day. She helps me stay motivated and moving because I know she depends on me to take care of her.
When you have ulcerative colitis, it’s so important to listen to your body. There is no cure for the disease, but the surgery series does provide a life that isn’t full of pain and bathroom trips, as long as you learn to take care of yourself.
Exercise, eat right, don’t consume a lot of alcohol, and get at least 8 hours of sleep per night. If you have UC or a J-pouch, don’t put yourself into situations that give you added stress. There are plenty of jobs, relationships, and scenarios that will help you flourish. Take care of yourself first. Without your health, you have nothing, so don’t let anyone or anything jeopardize that.