In April, 2016 I had my total colectomy surgery and have been out of the hospital for over three months now. I just recently started feeling normal and forgetting about my health issues mainly because I have been feeling so well lately.
Ever since the surgeons removed my large intestine I am theoretically cured from ulcerative colitis. I still have part of my rectum which has its own issues, but I am much better than I was before having ileostomy surgery. I have recently got back to doing normal everyday tasks and even taking them for granted again like the average healthy person does.
In the back of my mind there is always that one thought that keeps me from feeling fully relaxed and keeping me from enjoying my life. I know I have to have another surgery and my surgeon has given me two options to choose from for my next step. I feel like my decision is like playing medical russian roulette and here is why….
I can either have a permanent ileostomy or I can attempt a third surgery and have them construct what is known as a J-pouch.
I have tried to gather as much information about both of these procedures as possible in order to make the most informed decision but I really am surprised at the lack of information available. Against my surgeon’s orders I have found a group on Facebook that I have learned more from others going through these procedures than anything I have found on the sites he had recommended.
To my surprise there are many people facing this same decision which seems like roulette to me. I hear stories of complications from the J-pouch as well as stories of complications from the ileostomy. Unless you are psychic and know the outcome you are taking a huge risk with your own life having to pick which one will work for you.
For those of you who are not familiar with either procedure I will explain what little I know about both of these options:
An ileostomy is basically where they create an opening in your abdomen out of your bowel that allows stool to pass through into an ostomy bag. The bag needs to be changed a few times a week and emptied several times a day.
A J-pouch is a procedure where they create a pouch internally for stool to collect and pass through. This procedure, even when successful, will require the patient to empty their bowel 7 or more times a day (according to my surgeon).
There are possible complications from both procedures and lifestyle changes can occur with even successful operations.
My surgeon has warned me that having a J-pouch can keep me from living my life normally since I will always have to worry about being near a bathroom. This is much like the life most people with ulcerative colitis or Crohn’s disease are already living. It’s very hard for people that do not suffer from these diseases to really understand how that can affect your life.
I worry that having a J-pouch will prevent me from doing things I love the most like kayaking, going to garage sales, or even just taking a walk with my daughter. It’s hard to imagine being in my early thirties that I would have to worry about having accidents and complications that could lead to more surgeries as well as medicines with lots of side effects. One of the more common complications I have learned about from people who have the J-pouch are things like pouchitis which is inflammation of the pouch that increases the amount of time you have to go to the bathroom which can lead to other complications.
An ileostomy has some risks as well like blockages and hernias. A blockage is exactly what it sounds like, certain foods can become stuck and may require medicines or surgery to remove the lodged food. This can also happen with a J-pouch but people with ileostomies seem to be more prone to hernias. Another downside to an ileostomy is the most obvious one, you have a bag attached to your abdomen that fills with stool which requires a lot of preparation, care and maintenance. This can lead to self-confidence issues as well as dehydration, malnutrition, and if it leaks, it leaves one heck of a mess to clean up!
Making this decision has been extremely hard for me and I still have no clue which one to choose.
Just when I think I know what I want to do, I think of the downside and change my mind. I don’t have much time left to decide as my rectum needs to be removed as soon as possible due to my elevated risk of developing cancer. The removal will coincide with the other procedures I choose to have so I need to make a decision and I only have about three months to decide.
This post originally appeared July 12, 2016 on Thirty Something Super Mom.