Double Ostomy: Seeking Support for Rare Cancer Survivor with Multiple Pouches

Hi everyone.
I have read a lot of your problems and was hoping to see someone with a double ostomy. So far, I have seen none. I have had a rare cancer, and it took my bladder and part of my colon. I have a discharge coming from my rectum, and it is very annoying. I have trouble enough with the double pouches, let alone I have to wear a pad too. Is there anyone out there with this problem?

Hi Lecia - Yes, there is a woman with a small child on this site with a double ostomy. I hope she sees your post (I wish I could remember her name!)

I don't have a double ostomy, but I do have significant problems with leakage from both the remaining rectum and my bladder due to terrible scar tissue problems. So I can empathize with the whole pad thing! Sometimes that bugs me more than my colostomy. BTW - Can you irrigate your colostomy? Being able to irrigate once a day and getting some control that way has been a Godsend for me. You are a brave soul!

Thank you, Pinky. I am not sure about irrigating. I wasn't told it could be done. I hate wearing a pad. I thought those days were over. And it is the long ones that I wear. It isn't enough to be bothered with double ostomies that I should have to wear pads and another problem with a prolapsed vagina. Which adds more discomfort. Thank you for your input and I will ask my doctor if I can irrigate.
Lecia

Hello Lecia, I have both a colostomy and urostomy. I was born with ectopic bladder. I agree it's an awful lot to cope with, although not all the time. If I can help in any way, just get in touch. Take care, Margaret.

Thank you, Meg. I was beginning to think I was the only one to have a double ostomy. Although I knew better. How long have you had it? It is so hard to get used to. I have had mine for about 3 years now. I was wondering where you get your supplies? I get mine through Liberator. They deal with my insurance and Medicare. Do you have a drainage bottle or bag for nighttime? I like the bottle better, it's easier to clean. I have to order a new tube every so often or a new adapter. I am looking forward to communicating with you in the future.
Thank you,

Hi Lecia.
You are not alone. I too have a urostomy and a colostomy. I had vaginal cancer in 1981 and then again in 2006. When they treated me with radiation (and chemo) for the second cancer, it basically made everything in the pelvic region shut down. So I had a full pelvic exenteration in early 2010 (removal of the bladder, colon, a hysterectomy AND vaginectomy all at one time). Although I've had many problems during recovery, most have subsided over time. I haven't had to wear pads for a while now, but I know what you mean when you state that isn't having the double pouches enough! My only advice is to reach out to any and all medical folks you deal with to see if they can give you advice. Also, have you contacted your local ostomy support group? I'd Google it to see if there's one near you. They usually have tons of information. Take care of yourself.

By the way, I use a drainage bottle too - much better than a bag!

Hiya Lecia, Sailsix, and all those with a double whammy. How lucky we are to be posting here!

Sailsix, I had a total pelvic exenteration and a complete abdominoplasty at the same time 6 years ago in the Royal Marsden London, so I ended up with a colostomy and ileal conduit positioned on my waistline. It was for recurrent cervical cancer that had spread every which way, so yes, I really am lucky to be able to post here.

It is a hassle managing the two stomas on a daily basis. I am lucky if the ileal conduit lasts for 24 hours, and the colostomy is at least twice a day. I can't imagine how people keep fixings on for a week!

I could write a whole list of moans and groans here, but that is not what keeps me going. Every day, I try to do a little bit more than I did yesterday. It always works because sometimes I just stay in bed a little longer, lol!

Yes, we are a small group globally, not just in our country of origin. Good to make contact with you. It's the isolation that I find hardest.

Love and peace to you all.
Julia

Add me to the group. I have an ileostomy and an urostomy. The ileostomy was in 1996 due to a recurrence of colon cancer and the urostomy was in 1998 due to damage from radiation.

The only type of leakage I have (I still have my bladder) is when my body will involuntarily try to urinate the old-fashioned way. It's like a spasm in my abdomen that I can't stop. And 95% of the time, nothing comes out. When something does come out, it's only a couple of drops.

I find it extremely frustrating having to worry about not just one bag leaking at any given moment, but two bags leaking. Heaven forbid it happens when I'm in a meeting.

I'd be glad to hear about how others are dealing with two ostomies.

Lecia (referencing your 2011 post)
I have had a colostomy for over 20 years. I am getting ready to face a urostomy due to progressing spinal cord problems since birth - though I can walk (I both irrigate my bowels and cath my bladder). I am more terrified than I have been for any of my other surgeries. Not sure if I am just getting older or the existing super germs are scaring me. I would like to hear some ideas on handling the double from any of you out there - especially female. The oncology surgeon plans on taking my bladder since it is useless. From your post, it sounds like a good thing? Being most comfortable housebound has made me a bit nuts... hope the surgery will make me more confident.

Pat

Sorry for taking so long to get back to you, Lecia. I'm in Scotland, and thank God we have the NHS, that's our national health service, and it's free. I use an overnight drainage bag. How are you coping now?