Facing Life with a Stoma: My Journey of Resilience and Choices

I am not one for tears but the reality is setting in today and a few of them slip out when my general doctor is in the room. As she comforts me and tells me that if anyone can live with a stoma for the rest of their life it will be me, the fighter. I know on that for me it is going to be a choice, do I choose to be a survivor and take this on knowing I am fierce and independent and I will win and have a better life or do I allow the little girl inside of me who is really scared and wanting to curl up in a little ball and cry out? I know in the end the answer will be the fighter in me will be present the whole time, only glimpses of scared will show through and I can control when and who I show that side to. I think that is one of the reasons I am documenting this so I know the journey I have been and am going on.







I completely lost it in the car once we left the hospital. I realized that I had to go out into the world now and face everyone and everything before me as a new person. I honestly don't know if I am ready for this. Do I tell people about my ileostomy? Do I speak out and raise awareness? Should I go through my closet and get rid of the shirts I know I won't wear anymore because they are too tight? Will that be too overwhelming for me? Should I go to a therapist and process through my feelings? Will I ever be able to date again? Why couldn't this have happened when I was older and established and married with children? Isn't it enough that I have a permanent ileostomy but I get diagnosed with a blood disorder on top of it which means I will always be on Coumadin? Is my family being nice to me out of pity? Can I cry in front of people? Should I go shopping for some new clothes? Will my mind ever stop coming up with all of these questions? Should I hold a ceremony grieving the loss of my "naughty" colon? Is it okay to grieve something that never worked for you in the first place? This is a journey and the road isn't going to be straight and I know there are going to be a lot of potholes but I also know this is going to be a new beginning for me. Beauty is in the eye of the beholder they say. Choices are going to have to be made so do I sink or do I swim?

RiotGrl,

Right now your mind is in overdrive. It is a lot to absorb and cope with. Many of the questions that are racing through your head right now seem overwhelming. However, over time they will take care of themselves and you will see that what you think now to be a monumental hurdle really isn't. Please remember this, you are not a new person. You are still the same person you were, only with a slight modification of your anatomy, an anatomy that is not visible. You'll adjust fine. Just give it some time, don't rush things, and certainly avail yourself of all the help you can get from your family and the many good members of this site. Don't be afraid to ask questions. Be well and proceed onward!

X_

Hi Riot,
Xerxes is spot on with the need for you to take time to process and accept all that has happened to you. You are grieving for a loss, but I don't think it's that "nasty colon" which was removed. Perhaps it's the image you had of yourself which has been shattered with your operation. In its place right now are anxiety and doubts about your future. The really good news here is that you are a reflective person who refuses to live an unexamined life. As you approach that decision to "sink or swim", you may want to look at your situation through the lens of what people call the 'grief cycle'. It's not just for folks coming to terms with death and dying; it's also for people who have suffered or will suffer profound loss. It might give you some structure to guide your moments in meditation and journal writing. Some of us here at Ostomates might be privileged to travel with you on that path from time to time. Keep on blogging and learn to swim.
Prime

Thanks Prime,
I definitely will keep blogging through this journey. Thank you for the encouragement and also the reference to the grief cycle as I am sure it will be a help to me.

Loss, grief, fear of the unknown, beautifully expressed RiotGrl...We've all experienced it at one time or another, my sweet girl. I agree that illness should never strike the young; it breaks my heart to see so many of you on this site.
Just know that the answers you seek can't be found in a book, computer, or older wiser people. The answers only come with time... with time comes acceptance. For me, acceptance is living with what life has dealt you, with no tangible explanation of why, (other than medical facts which never kept me warm at night nor helped me put one foot in front of the other). You "start" with being strong for others, you "learn" to be strong for yourself. I wish I could tell you that an ileostomy won't affect your life, but the truth is, it will. You will become stronger, healthier, and hopefully come to realize, it was worth it. You'll never love the look of a stoma, but I promise that you will grow to love the freedom and quality of life it offers you.
Xerxes and Prime are just two wonderful examples of the support group here for you should you need anything. You're not alone on this journey, and I too am privileged to cheer you on...
BEG

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister