Sharing My Ostomy Story at Work

After working at my new place of employment for about a year and a half, I finally told my coworkers about my colostomy. I wasn't planning to do that because I didn't feel it was anyone's concern, and I didn't feel comfortable about it. But one of my coworkers, who knew that I had colorectal cancer, asked me if I had to get an ostomy because she knows people that had this cancer and ended up on the bag, at least temporarily. At first, I was angered at her for outright asking, and I told her it wasn't anyone's business. But I realized I just gave myself away by reacting that way. So I explained to her and the other people I work with that yes, I, in fact, have an ostomy and mine is permanent. I told them I was going to tell them when I felt more comfortable discussing it. I also explained that I am not ashamed of it and there are plenty of other people that do know. My supervisor replied that one of her close friends has an ostomy. So I felt a little more comfortable. After getting this secret out in the open, I felt a great sense of relief. I am not as paranoid about the chance of leakage or the noises I make when there is gas because now they will know that it's my ostomy. I wonder what their next question will be
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That must have been really hard. I still cry when I tell people I had to have an outer sphincterotomy and am now incontinent. Keep your head up! Neither you nor I have anything to be ashamed of. We didn't ask for this.

Please forgive me, but I'm very diligent about my ostomy. I have named my stoma Rosebud Poopy-Butt and I use her as an educational tool to encourage others who either have a family history of colorectal cancer or are of a certain age, or are having problems with their bathroom habits, not to mess around - call the doctor and have it looked into or get that colonoscopy. I tell people it's a nice nap and that their butt is not all THAT special!!! Since I met with my ostomy nurse before my surgery and had my abdomen marked where I wanted Rosebud placed, Rosebud is on my midriff - above my waist, below my bra band.

I'm not a shy, bashful person and I am not ashamed of Rosebud. There is nothing to see when I lift my shirt a little bit to show my pouch - and it's often just enough to jar skeptics into actually calling the gastroenterologist to get an appointment. I tell them it's essential that their siblings, parents, aunts, uncles, grandparents, and friends get a screening colonoscopy and if there are polyps, get them taken out. My husband had two polyps at his last colonoscopy and the doctor lopped them off and told him afterward that they were pre-cancerous. I told my husband that his doctor had just saved him from potential big problems like mine.

Last Saturday, I went to get my nails done and there were two younger girls (early 20s) getting their nails done. The guy doing my nails asked me how I'd been and I told him, "So far, so good." He knows about my cancer. It's a very small nail shop, and we all know each other, so I told the girls that I wanted to talk to them about cancer. They were all ears and listened to what I had to say. I told them that I was a Stage 3 rectal cancer survivor and I felt it was part of my purpose in life to tell others and convince them to get their colonoscopies. I told these girls to please talk to their parents, their aunts and uncles, their grandparents, anyone of a certain age, and ask them to please get checked. I told them that lots of people seem to think their hiney is just SO SPECIAL and exceptional. I told them one hiney is pretty much like any other and there is no need to be embarrassed because the doctor has seen hundreds if not thousands of hineys. I told these girls they have the potential to save a life! Yes, I lifted up my shirt and they saw the pouch. When I was done, they knew a lot more than they did before. It was good and they hugged me and thanked me.

Dee, please don't ever EVER be ashamed or unwilling to share your story. YOU and I are survivors. I truly believe it is part of my mission as a survivor to get others to take care of themselves. I was WAY SMARTER than my doctor and when he told me that he thought it was time for me to have a colonoscopy, I told him, no, I have no history in my family; I'm OK. Yeah, sure, I was. I was growing Stage 3 Rectal Cancer, a 2" rectal cancer tumor that invaded my vagina. I no longer have a vagina. I had a complete hysterectomy when I had my cancer surgery, but I am alive - and I am THANKFUL. I told my surgeon that I was going to spread the word and do everything in my power to help save lives. He thought that would be a good thing for me to do, so I'm doing it. Nothing to be ashamed of. Nothing to gross anyone out. Just telling it like it is. Best wishes and I hope you can get past your feelings. We have nothing to be ashamed of or afraid to tell others about.

Hi, I am really thankful that I have these stories you all share to read. I am getting an ileostomy bag in two weeks. I am scared but have been suffering with constipation and pain for so long.

I have peritoneal prophase syndrome with colonic inertia, & anal outlet obstruction. Many tests and recommendations say my colon and anal muscles just don't work, and so the bag it is. I can't deal with this anymore. Anyone out there with an ileostomy? How much different is it than a colostomy? Thanks, all.

Hi, CDD! I have a colostomy and all I know to tell you is what I was told by my oncologist, my colo-rectal surgeon, and my ostomy nurse. They all told me the same thing: Life is going to be way better after your surgery! It will set you free! And, you know what? They were absolutely right! I can go to the grocery store now and not have to run like a crazy woman to the bathroom before my uncontrollable diarrhea attacked. I can go out to breakfast, lunch, or supper and sit through the whole meal! You bet your booties life is better. No more worry about problems while you're out and about. Life goes on and life will be much, much better for you. The confidence will just ooze out of you! One thing though - don't forget to always have supplies with you at all times. You never know when you're going to need them. Be prepared. Other than that, go and have a great life - be confident. You will still be you! No one can ever take that away from you! I always wear my shirts out and knit tunic tops, so I still dress the way I always did. No one knows I have Rosebud unless I tell them. Good luck! You're gonna be better than fine!

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

I just started a new job last week. I ended up having a leak and had to change my bag in between surgeries (I'm an OR nurse), so the cat got let out of the bag early, lol. But they all were laughing at me, and even as medical personnel, they did have questions. Last winter, when I went to a new PCP after 6 months, when I told her I was going in to get scar tissue removed, she asked if they would have to put a temporary ileo in, and I said no, my colostomy was working great. She looked at me and said, "I've seen you in here after you were at the beach, and I didn't even notice it." She thought I had gotten my previous ileo reversed and didn't catch on that I had to get a colostomy. So the moral of the story is, tell when you want and what you want. I've been fortunate that everyone I meet, even guys, are accepting. :)

Dear CDD,

Morning to you.  This is my first time responding to a post.  You have piqued my interest...being similar to my situation.

I was diagnosed with stage 3 rectal cancer May 2005.  The tumour was removed and I was put back together.  Because of the inertia I could never pass a stool.  The pain was unbearable.  Could not take my chemo or radiation because I was just too sick.  Finally had a colostomy installed in December of that year.  After a year of depression and healing, I moved on.  Lived life like I hadn't for years.

By 2009 the colostomy had stopped working properly because of the inertia.  In March 2011 I had an iliostomy installed and the entire colon removed.  Because of nerve damage and the loss of a major body part, depression set in again.

I am happy to say it will all work out.  I pray you have no issues. Life will get better.  As you know it is worth it to live without pain.  We can live a normal life.

I just turned 60 and did not think I would live to see this day...it was a great day.

Take care

Your fellow ostimate...Linda, aka stillmovin

Hi Linda & Poppy, thanks for both your stories. I have not been on the site for a while as I had surgery, and as you know, I'm dealing with major adjustments and learning how to put the bag on correctly. Just when I think I've got it, I learn I did something wrong or it's not working for me. Anyway, I am feeling better just seeing/knowing my stool is coming out, which is a relief. I know it sounds crazy, but I lived so long, so frustrated, waiting, trying to go, or taking so much stool softener & laxative, confined to home/isolated. The surgeon plans on a colectomy in 6 months, but for now, I'm focused on this. Any advice?

Thanks,

CDD

Good afternoon.  I like this post and have read many relating to the same topic.  It has been almost 6 years since my surgery and just recently I began talking about my medical journey.  I present my experience, strength and hope to university nursing students twice a year as part of a nursing course and talk about how their support, supported me during a very sad time in my life.  Often, the students think that I am some sales rep, pharm rep talking about medical products.. then... I tell them what happened to me and that I have an ostomy.  All eyes lift and stare... I have their attention:)  It is an awesome experience.  My wish is that my journey has not been in vain and that I am able to be a friend to someone walking a similar path.