What I have learned in the past 24 months of living with an ostomy
It is amazing to me to think that on this very day, just two short years ago, I was at UNC hospital, saying ‘goodbye’ to my colon. (I actually wrote an obituary for my colon that day!) At that point, I was scared, but I was ready. I was ready to start feeling better. I was ready to be able to walk again without being in an enormous amount of pain. I was ready for my life to start again.
For several months, I felt like everything had just stopped. I had quit my job because I was feeling so bad. I had a hard time going out with friends, even for a short time. And I was trying every last-ditch effort I could think of to save my colon, like changing my diet and ultimately going cold turkey off of all meds. (Side Note: Not a good idea.) But obviously, none of it worked.
I think back to those times and wonder… Why did I fight it so hard? What if I had gotten the surgery soon? How would that have changed those years of suffering and exhaustion? But I realize that I should never think like this. It doesn’t matter “What if.” All that matters is what happened and where I am now. I also don’t think that I would as fully appreciate the new life my ostomy has given me if I hadn’t been through all of those things. I may not be as comfortable as I am with my ostomy if I didn’t have the memories of the difficult journey I have been through.
That’s the reason that I would never tell anybody, “You should get your colon removed and get an ostomy… It’s great… I’ve never felt better… I wonder why I didn’t do it sooner.” If you are blessed, as I was, with the ability to make a decision about having the surgery, rather than being taken into emergency surgery, then it should be taken seriously. The decision to let go of your colon and accept the idea of an ostomy bag, especially a permanent one, is a HUGE decision. It will change your life. It will affect the way you feel about yourself. It is a decision that the patient needs to make and on they need to be able to live with. So I would never push somebody in the direction of having surgery.
What I am here to say is, “It’s going to be OK.” Whether you have run out of options or you have just accepted the fact that you will do whatever it takes to feel better, this decision is not going to ruin your life. It does not have to be so scary. It does not have to be so devastating. Just as each person living with Crohn’s disease or ulcerative colitis have found a way to make it through each day and have adapted to the changes it has brought to their life, you also learn to live with an ostomy.
And after 730 days of living with an ostomy, that is exactly what I have found: It’s all OK.
This picture is probably the last one ever taken of my stomach pre-ostomy, next to one of me from today.
Yes, sometimes I wish I still looked like the one on the left, Yes, sometimes I miss having a colon. Yes, I still get upset at times when I look at my stoma. Yes, I sometimes try to remember what it’s like to be “normal” (even though I can’t really do so). And YES, it has all been worth it.
I am now living with a lot less stress and worry and pain than I used to. I wouldn’t go back to the life I had before for anything. My ostomy has changed me. And while I may not like every single thing that has changed along with it, it has given me back some of the hope I had lost in living a beautiful life.