Coping with an Ileostomy: Sharing My Story

May 13, 2011 9:31 pm

Jenny, Nichole, I have had an ileostomy for 8 years. I want to share my story, hopefully to assure you both that life will go on and we do find ways to cope. So here it goes: I had just turned 50. I had a lot of upper bowel pain. It turned out to be cancer of the transverse colon and a cancer polyp in the lower part of the colon. They removed all of the colon except the rectum and connected the 2 parts back together. I had a respiratory arrest. This was the last of May. My husband of 32 years, who I adored, died in August of a sudden heart attack. In December of the same year, I was having a routine check of the surgery site by colonoscopy and the cancer was back again. I was informed that it was a very aggressive type of cancer. And to be honest, I had no desire at that time to live. My husband's death had devastated me. The only reason I had my last surgery was for my son. It would leave him without a mother or father at the same time. He was struggling so hard with his father's death. So I had the surgery and went on. Man, it is so hard sometimes, but I think just knowing you're not alone helps. That's why I do a lot of teaching and sharing with people who have new ostomies or the diagnosis of cancer. Maybe that's why I lived. I don't know, but it seems right. Thanks for reading my story. The very best to you both!!

May 13, 2011 9:35 pm

Sorry, I got interrupted in the middle of the story, after the second bout of cancer I had all bowel and rectum removed and since then have had an ileostomy. It helps if you don't leave out an important part! Ha!

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May 14, 2011 1:59 am

Dear Eddie,
Thanks for posting your story. It is heartbreaking and inspiring. What a catastrophe in so many ways; such terrible losses to battle through in such a short time. How you were able to get through all this is amazing. Thank you for sharing your story. I absolutely admire the grit and courage you have drawn on to keep going and help others find it within themselves to do the same.
It reminds me of when I worked with refugees. I knew many people who had survived the siege on Sarajevo and the stories of survival were appalling. I asked one time a couple how they managed to keep going when honestly, it would have been so much easier and relief even, to just die. And they both told me....there was always someone who needed you. Someone who was worse and needed you to live so you could help them. They survived and eventually life did get better.
As you say, you found the strength to live for the sake of your son. Your story is living, breathing encouragement to so many.
Thank you.

May 14, 2011 3:03 am

Your comments are very kind. I reread my post and noticed all the typos. It's a darn good thing I became a nurse and not a secretary!!!

May 14, 2011 3:31 am

Your story is really amazing. God bless you.

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May 14, 2011 8:08 am

There was a period in my life when I just wanted to give up and go to whatever place it is we go to. I looked at life as an enemy as opposed to my friend and let the gloom overwhelm me, and it seemed to be easier to give up than exist.

I think your story is a wonderful example of faith to believe in yourself and those who love you.

Great job, Eddie.


May 14, 2011 5:24 pm

Hi Eddie - when I was struggling to live or die in 2003 after horrendous surgery, including a temporary ostomy, and my husband wouldn't even sleep in the same room with me, my lovely daughter who was 17 at the time (and very squeamish about yucky medical stuff) came in every night for a month and lay with me all night. She said it was because it was so much cooler in my room - but to me it meant the world because someone loved me enough to overcome her revulsion and just "be" with me. My kids have stuck by me through the worst medical and psychological stuff (including my husband divorcing me and remarrying within 2 months of the divorce being final - to a woman the kids despised - essentially severing ties).

It is rough to keep going, but after 5 years of no ostomy and pain/suffering going to the bathroom "the real way" I am, after having the permanent colostomy 2 years now, happy to be alive and moving on with life.

I just finished up my master's in public health and graduation is next Friday! Whoopee!!!!

May 14, 2011 7:24 pm

Hey KT,

What a wonderful statement from your heart. Never give up as you say. Contrast this to Herculisa's sentiment that one might be better off dead surely says a lot about the cross section of humanity (or lack of) on this site. Thanks.


May 14, 2011 8:34 pm
I am constantly amazed at how well some people can overcome incredible pain and suffering and discover that, despite everything, life is still very much worth living. I found this quotation from Kahlil Gibran that describes the personal strength of so many of our ostomates here: "Live life so completely that when death comes to you like a thief in the night, there will be nothing left for him to steal."
May 14, 2011 10:02 pm

Hey Eddie, maybe we all got through to teach others! I share my story with many people, but I never ever wanted to die. All I wanted to do was get better. Dying never ever came into my mind... But something I did do was bungee jump when I got my first of a couple temporary ileostomies. I thought life was over, and that was only because I was turning 30 years old... Working and talking to new ostomates at my local colostomy association has been an experience in itself. I want to post my bungee jump video on here, but I'm not sure how (sound down, of course) lol... Yes, I actually have heard of similar stories to yours. It's heartbreaking, but to go outside of the doors we live in and look around, life is still moving at its normal pace. That's something I had a good look at through my 21-year experience with Crohn's disease and long spells between operations and choices being left up to me. To have or not to have a stoma and soul searching made my life "stop"... But the world was very busy. I wanted in, big time... xxx thanks Eddie xxx Mooza "I still struggle with pain, but wanted to put my 2 cents in xxxx"