I had a lymph node in my pelvis removed three weeks ago. I told the doctor not to remove my bowel unless absolutely necessary as I'm scared of dealing with a stoma.
My melanoma cancer is on my vagina and growing and as I'm seeing my consultant next week, I want to be prepared to discuss the bowel removal again. What is it really like living with a stoma?
The whole issue is just appalling to me and I can't decide if I could live with a stoma and all it entails.
Is it worth yet? This is my third time dealing with melanoma, first on my vulva, recurrence meant a radical vulvectomy and now this.
Bless you
You have definitely come to the right place for advice on stoma management
Im older so I was resigned to getting something.
A friend of my husbands dad had bowel cancer a year prior and refused the op. Now that was horrendous for his family. So I had an inclination of what it may be like if I didn’t have the LAR
I despised the cancer so that was another thought that helped me come to terms with my pending stoma. Also I may have a chance for a reversal though that’s not definite
So when I woke up after my op I put my hand on my right hand side mine is an Ileostomy and felt the pouch and smiled. I was just so relieved. The cancer was in the bin and if it took a stoma so be it. The relief of not having that huge tumour outweighed the stoma.
To deal with. Well six months on I’ve lost two sizes everyone says I look fantastic. I feel great and do basically more now than before.
Are you having two stoma’s I’ve just read you bio and it says bowel and bladder I will add SarahH2
Ask anything
take care
Ann
It’s just waste leaving your body from a different place. It’s really not disgusting we all have stools.
Are you having a colostomy or Ileostomy?
Ann
Hi Beniciam and welcome to the group.
I’m sorry to see you are so horrified by thought of a stoma, but the unknown can be very scary. I had cervical cancer and I’ve had a total pelvic exenteration so lost my rectum, vagina, bladder, my whole reproductive system and sundry other bits and pieces as they were going along! So, I live with 2 stomas, a colostomy and a urostomy.
I am almost 60, so a little bit younger than you, but I can say now that I have never once regretted my surgery which was 2 years ago. You say everything you’ve researched makes it seem worse, but if you talk to us here in the group you will hear real life experiences, and see people leading good lives.
I was just like Artsie Ann-my focus was on getting my cancer in the bin and being able to live. My colostomy is on my left hand side, and my urostomy on the right, and like Ann, the first thing I did on waking from surgery was to feel if I had bags on my tummy. I smiled when I felt them because I knew I had a chance then. Without my surgery I didn’t have long.
I have never been disgusted by my stomas, more fascinated that this surgery exists and gives us a good chance at living. I do everything I did before, go on holiday, go swimming, and the only thing that’s different is that I don’t use a loo in the way I used to! It’s life changing but life saving. I can’t ever have anything reversed as everything inside has gone, but I’m just so glad to be here and enjoying my life!
I hope you are able to come to terms with the thought of a stoma-I’ve lived very successfully for 2 years now with 2 of them. Please feel free to ask any questions and we’ll all try to support and reassure you.
Sarah xx
Thanks.
im an Ileostomy which means emptying every two to three hours. I believe a colostomy is change the pouch daily.
Others will have much more info than me.
Ann
Hi Ann
Definitely different, but I’m sure we can all help and pitch in with our experiences. The other day when I had an upset tum I had 5 bag changes by lunch time, so you never know! 
Sarah xx
Hi Kim
I’m the same. I wouldn’t have a reversal if it were possible. I knew mine would be permanent before I had surgery and that didn’t cause me any concern. Just wanted the cancer gone, and wasn’t concerned about how they achieved that!
Sarah xx
