One of the questions I get most often from readers of my blog is why I chose to have a permanent ileostomy instead of trying j-pouch surgery. Though I have mentioned a few of the reasons in other posts, I decided to address this topic in a little more detail. The point of this post isn’t to tell you that one surgery type is better than the other. They are both very good options. My goal in this writing is to share the thought process I went through to make my choice.
In the course of my illness, all my symptoms, colonoscopies, and genetic testing pointed to Ulcerative Colitis and not Crohn’s. This made me made me a candidate for either surgery type. At age 38 during the time of my surgery, why would I choose to live with a “bag” for the rest of my life?
It wasn’t a decision I took lightly, and I gathered all the information I could. This began when I was still in the hospital, facing the possibility of emergency surgery. The very kind and helpful general surgeon who would have done my surgery had I continued to decline, visited my room almost every day to check in and patiently answer my seemingly endless questions. He introduced me to the words “ileostomy” and “j-pouch” and gave me a great foundation of information to build on.
From there, I reached out to others. What was it like to really live life after each of these operations? Surprisingly, I already knew a couple of people who had gone through colon removal surgery. One of my friends has a permanent ileostomy and visited me in my hospital room. She showed me her appliance and told me about the full life she was able to lead after surgery. My husband knows someone who has a j-pouch, and she shared her story with me. I reached out to people on the internet, who graciously told me about their j-pouch or ileostomy experiences. One of these individuals was Rob Hill, the first ostomate to climb Everest. Each of the people I contacted seemed happy with their life after surgery.
As it turned out, I was able to avoid emergency surgery in the hospital. An infusion of Remicade successfully ended my flare and allowed me to go home and regain strength. However, several days later, my body had a weird delayed reaction to the drug which resulted in excruciating joint pain. I could hardly walk or hold a pencil while on the medication — a serious blow to someone who thrives on outdoor adventures and loves to sketch. I knew I could not live with those side effects. The time had come. I definitely wanted to have surgery. The big question remained: ileostomy or j-pouch?
I have always been one to put a lot of trust in my inner voice. It is good at reminding me what I value and want out of life. After all my research, that little voice was telling me loudly to go for the permanent ileostomy. Of course, my inner voice was not speaking blindly. To arrive at this decision, I analyzed how each surgery type would mesh with the things I loved to do the most in life.
On the top of the list of my passions was going on outdoor adventures with my husband… especially rock climbing. Our favorite routes involve spending hours, or sometimes all day, up on a cliff. With either a j-pouch or an ileostomy, bowel movement frequency is going to be more than for someone with a normal digestive system. However, I personally felt that dealing with that frequency would be easier on a climb with an ostomy appliance than a j-pouch. Ostomate climbers had told me about their methods of swapping out closed-end pouches on a two-piece ostomy systems while on routes. If my appliance began to fill up, I could wait until I got to a convenient ledge with no discomfort and then snap on a new pouch and pack out the old one. I thought the j-pouch would be harder to deal with. As it filled up, it could be hard to hold it for hours until I got to a place where I could go to the bathroom. As I can personally attest to, “normal pooping” is not that easy to do on a steep technical rock climb. It was not something I wanted to have to do regularly with frequencies of 6+ times a day. I felt a permanent ileostomy would match best with my passion for rock climbing.
One of my other big loves in life is my job as an interpretive naturalist at a park. When I was in my teens, my family went on many vacations to national parks across the country. Not only did I fall in love with these places, I was inspired by the rangers that led the campfire programs we went to each evening. Then, when I was 18, I spent a month deep in the backcountry of Rocky Mountain National Park building hiking trails. I soon realized that I wanted to devote my life to helping people connect with these wild places, and I earned my college degree in the field of Environmental Education and Interpretation. However, getting a job in this profession was not easy. Competition was fierce. I had to work seasonally and at low wages for many years to get the experience necessary to land my current permanent position. I wasn’t about to let UC get in the way of my career. When it came time to choose my surgery type, I looked carefully at which option I felt would be best at work. I am often out on the trail or up on stage leading programs for visitors, and can be away from a bathroom for several hours. With an ileostomy, I would not have to worry about being uncomfortable and holding it as I might with a j-pouch. I could empty my appliance before a program and be fine for hours. That said, I am sure there are people who chose j-pouch surgery and are happily working in careers just like mine or doing long rock climbs. It is just not the route I wanted to go.
If those were the things at the top of my list, there were also items that were towards the bottom. I wasn’t that concerned about what my belly would look like with an appliance, and it didn’t bother me much that I would never go to the bathroom in a normal way again. In fact, after dealing with UC all those years, the less I had to think about my bowels or bathrooms, the better. I also knew that there was a small risk of j-pouch failure or getting chronic pouchitis, and I didn’t want to gamble with these possibilities. Permanent ileostomy surgery seemed more predictable. I wanted to get surgery, learn to manage my appliance, and move on with living my life again. As long as ileostomy surgery gave me a good chance of doing all the things I loved again, I was happy.
When I finally had my consult with a top colorectal surgeon that my GI had referred me to, I was already 90% sure I wanted a permanent ileostomy. I remember being extremely nervous in the elevator going up to meet him for the first time. I thought he might try to talk me out of the surgery type I wanted and push me towards a j-pouch. I need not have worried. After explaining all the details of the two surgical options and hearing my wishes, my surgeon never made me feel bad about my decision to go right for an ileostomy and not try a j-pouch. He never made the permanent ileostomy sound like the lesser of the two surgery types, and I was so grateful for that. I left the meeting feeling supported, and knew I was making the right choice for me.
Now that some time has lapsed since surgery, do I ever wonder what if I had tried a j-pouch? The answer is no. Sure, there have been times when my mind curiously thinks about what that choice would have been like, but I don’t long for it. Because having an appliance-free belly and going to the bathroom the regular way weren’t high on my list of values when choosing my surgery, I am not sorry about skipping the j-pouch. Of course, it is only natural that sometimes I miss seeing my bare stomach. I would have loved it if I never developed UC, and my belly could have remained untouched with my colon functioning normally, but that wasn’t the hand I was dealt. Neither surgery gets you back to a normal digestive system. Both involve adapting to new “normals” for oneself. Now that I am used to my ostomy, it has become part of me, and life feels very routine and natural with it. The what ifs that I think about now are: what if I hadn’t had ileostomy surgery? Would I be healthy enough to do everything I love like I can currently? What if things hadn’t lined up so perfectly to have my ileostomy with my amazingly skilled and compassionate surgeon? I have absolutely no regrets with the way things turned out. The results of my surgery have been everything I had hoped for, and I am thankful for it every day.
So if you are facing surgery and are able to have input into the type, know that it is a deeply personal decision. Make sure you do a lot of research and get all the facts. But above all, listen to that little voice in your head that reminds you of the things that are the most important to you. Choose the surgical path that you feel best coincides with those values and resonates most deeply with you. I think the more you personally believe in your choice, the better you will be able to adjust to your post-surgery life and meet any challenges successfully.