I have had a lot of comments from the Pouch Heals YouTube channel from people facing decisions on surgery – whether to have it, what’s it like, does it work, and so on.
Having surgery is a huge decision to make, as it’s a one way journey. Once your colon has been removed, you cannot ask to have it back! That decision point can be filled with fear, nerves, and a lot of anxiety. I faced the same troubles when I had to decide to move to surgery.
After reading a lot of comments I felt moved to make a quick, unplanned video trying to encourage those at that cross roads. The video is below if you would like to watch it.
Whilst the video was unscripted and unplanned, I hope to put a more organised note here.
Moving Forward
I am not a doctor and can offer no medical advice. All I can do is share my experience and offer encouragement to anyone facing this decision.
If you are someone at the point starting to have conversations about how bad your ulcerative colitis is, and maybe you should consider surgery, the chances are you have been pretty unwell. Potentially for a long time.
When I was on my journey, at the time, I felt moving to surgery was a failure. That I would be taking a step down in my life. That I was going to feel like I had lost, and that loss would stay with me. In the end, the decision to move forward with surgery was almost made for me when my cancer risk became a real issue.
But here is the really important thing to understand. Moving forward with surgery should not be seen as a failure.
A New Life
I am on the other side of the surgery journey now. I have had my J-Pouch for 16 years. What I have learnt is that moving forward with surgery was not a loss, it was a win.
The decision to move forward with surgery for UC is yours. It’s your body and you are the one that has to live with the results. When making that decision I think you need to be really honest with yourself and consider a few things:
- How has my health been recently?
- How many flare ups am I having?
- Are medicines working or are they loosing their impact?
- Am I missing out on important parts of my life?
I found my answers to those questions to be pretty damming. 16 years later if I was to ask myself those questions again now, I have very different answers. Where I worried surgery would hold me back, its actually propelled me forward.
The journey has been long, and at times challenging. However I don’t think I am exaggerating when I say I have a new life since surgery.
So many areas of my life that had stopped or never started are now part of daily activities for me. I’ve shared a few of them on the YouTube Channel.
Risks
Of course, no surgery is without risks. Risks either from the surgery itself, or risks around there being no certain longer term outcomes. I don’t want to give the impression that anything is a certainty. Its not. But when looking online there are so many people posting about issues with their J-Pouches, you would be forgiven if you think everyone that has one, has issues. Many of those issues will be recovery issues that get resolved with help and time. Some will be longer term. However, those that have a successful J-Pouch are not online posting about their pouches, they are out living their life.
Wrap Up
This is a very short post, and its aim is to encourage anyone who is facing that decision on whether to have a J-Pouch. The decision is yours, and of course J-Pouch is one option, living with an Ileostomy is another option. Rather than focus on the very next step in front of you, think a year down the line, two years and so on. What direction do you want your life to take? Do you want to take control of the ulcerative colitis that is many ways is making decisions for you?
Books: I have written books covering the J-Pouch surgery and life with UC across our family. You can see more information on Pouch Heals Books