Facing Ileostomy and Urostomy: Seeking Advice and Support

Hey, everyone.  I have an ileostomy for about 3 years now from rectal cancer.  I have adjusted very well to my ileo and my life is very much as it was before.  However, my cancer continues to come back and I've had 1/2 lung removed and a vaginal tumor removed.  Now, my doctors say that I have another small tumor in my vagina that will have to be surgically removed.  At this time, they are saying that they will likely have to take my entire vagina and bladder and I will then have a urostomy.  sigh I am trying to process all of this information.  I have responded very well to all of my prior surgeries, my ileostomy and chemo/radiation so far...but honestly, I feel like I don't know if I can do a double ostomy.  And I am feeling very overwhelmed with losing what I see as the last of my womanhood (my vagina) ...I had a complete hysterectomy when I had my first surgery in 2019.  Now they want to take the only female organ that I have left.  And my bladder.  Which to my knowledge, isn't even diseased.  Anyway, I am just needing some support right now and some words of wisdom.  Especially from a female who is a double ostomate and can relate and explain what life is like with TWO bags!!  I am 58 years old and have a long standing history of UC, which lead to a J-Pouch for 20 years, which developed a cancerous tumor that ruptured in 2019, starting this whole process.  (just some background)  Thank you for listening.  Lori

Hello Lori

My word you have been through such a lot, my heart goes out to you. ((HUGS)) x

I have two stomas, an Ileostomy and Urostomy. It was daunting to me when I knew I would need the Urostomy, then of course in mind a two bag user. Maybe have a read of my profile, that says what I had done and why. I still have my bladder, not used of course. 

Dealing with the 2 is really the same as dealing with one. Although of course at times one or the other decides to leak, but deal with it the best can be. 

I am having some problems with the bladder, so for the time being the possibility of having Botox treatment to stop the dreadful spasms I get each day, ranging from 30-35 a day. If it works, great, if not then I won't go for the full bladder removal as too big an operation in my opinion for spasms. 

Hello Lori

Wow you are one tough woman, unfortunatley I have nothing to offer you except my admiration.

I hope you get everything you desire.

Axl

Hi Lori, I am a double ostomate as of March of this year. Was due to fistulas between all of my insides caused by radiation and chemo for cervical cancer.  🤦‍♀️ I’m still learning to live with them and more importantly how to not have leaks but it is much better than what I was dealing with before. The way I look at it is that my insides were betraying me so I have chosen to not rely on them anymore. If you are doing one… you can do two!! You’ve been through so much already all of that is way worse than two bags. You got this 👍🏻😊