When Medical Decisions are like Playing Russian Roulette

When Medical Decisions are like Playing Russian Roulette 

It has been about 4 months since I had my total colectomy surgery and I have been out of the hospital for a little over 3 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 UC, I still have part of my rectum which has it’s own issues but I am much better than I was before having the 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….

It is a difficult medical decision to make but a lot of people are playing medical russian roulette.

I can either have the ileostomy permanently 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 russian 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.

Journey with an ileostomy and the russian roulette type decision to have the j pouch or permanent ileostomy.

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 a 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).

Some of the many factors I need to take into account when making this decision are the possible complications from both procedures and the lifestyle change that 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.

Journey with an ileostomy and the russian roulette type decision to have the j pouch or permanent ileostomy.

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.

The ileostomy has somes 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 the 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 3 months to decide.

I would love to hear your thoughts whether you know someone who has had to make a similar choice or if you have had to make this russian roulette type decision for yourself. What would you do?


  1. Those definitely are hard decisions. I had a friend who used an outside bag for some time and she seemed to get by pretty well. She had a good sense of humor about it, which can’t always be easy.

  2. A friend’s mother had an outside bag for over 15 years. She seemed to take it with stride, although being on the outside and not being able to relate, I can’t imagine how difficult it would be for someone to live with that for so many years.

  3. Mike Dixon says:

    To me it is a no brainer. I know it is not me having to make the decision but i would sure say no to that j pouch! It requires an extra surgery, more complications, and extremely limits your ability to live your kind of lifestyle. You are already living with the ileostomy with no complications or limitations so I would love to see you just have one more surgery to make it permanent and we can get on with enjoying the things we love to do. I would like to see you stay away from the hospitals and the broom jockeys that work there as much as possible. I love you just the way you are and I don’t want to see you suffer any more than necessary! Good luck figuring out what to do.

  4. Some surgeries are like a double edged sword. There really is no way to know which is better or worse. I wish you luck in figuring out what to do and I wish you a good solution!

  5. You are definitely facing a hard decision. I cannot even begin to think of what I would do being in your situation, since as you mentioned, they both will be life changing in their own way. Praying you find peace and direction.

  6. Mike Byrd says:

    Coming from somebody who did have several surgeries and a colostomy bag for seven months , I believe the ileostomy is the way to go , if for no other reason than you are already dealing with it and have many less future surprises ahead of you. As your dad and someone who loves you tremendously I think you need to make the decision you feel you can live with. Mr. Dixon makes some good points and I am just not confident in what I have read about the jbag and unless future improvements come along I would be skeptical to say the least. love you…always here if you need me.

  7. I am so sorry you have to deal with these issues. Seems like so much for someone to have decide especially so early on in life. I feel like I can’t really give you any advice either way because I have never dealt with any of these issues. Good luck in whatever you choose to do.

  8. This is a really tough decision. I hope whatever you decide works out well for you. I’m glad you are feeling better post surgery and I hope the next procedure brings you even more comfort.

  9. These are definitely choices that take a lot of research and thought. I pray you make the one that is best for you in the long term…

  10. Wow…That’s a tough decision and I don’t know what I would be feeling if it were me. I have my own medical decisions to make but a totally different type (back surgery options in my 30’s) and that’s hard enough to try to figure out. I do hope you area able to come to a decision that your a peace with and that’s what is right for you though!

    • Thank you! I hope your back is healing well. My husband had surgery and it didn’t quite fix his problem, he still suffers years later after several surgeries.

  11. It is a huge decision weather to have the surgery and have the J bag or not. I worked in care and residential homes where many patients had J bags and we changed them several times a day and most have been prevented from doing simple things in their lives. I hope you make a decision for you and your lifestyle

  12. Oh wow, I’m sorry to hear that you’re going through this. Regrettably I don’t have much knowledge but I believe that you’ll come at the best choice in no time. I wish all the best with you!!

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