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Double Ostomy

Posted: Tue Nov 15, 2011 7:44 am
Hi everone.
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?
Posted: Tue Nov 15, 2011 6:31 pm
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!
Posted: Tue Nov 15, 2011 8:37 pm
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 dasys 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
Posted: Wed Nov 16, 2011 2:30 pm
Hello Lecia, i have both a colostomy and urostomy, i was born with ectopic bladder , i agree its an awful lot to cope with, ,although not all the time. if i can help in anyway just get in touch take care Margaret.
Posted: Wed Nov 16, 2011 5:54 pm
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 night time? 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,
Posted: Tue Nov 22, 2011 3:29 am
Hi Lecia.
You are not alone. I too have a urostomy and a colonostomy. I had vaginal cancer in 1981 and then again in 2006. When they treated me with radiation (and chemo) for the 2nd 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 awhile 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.

Btw, I use a drainage bottle too - much better than a bag!
Posted: Tue Nov 22, 2011 5:46 am
Hiya Lecia, Sailsix and all those with a double wammy, How lucky we are to be posting here!

Sailsix I had a total pelvic exenteration and a complete abnoplassy at the same time 6 years ago in the Royal Marsden London  so ended up with a colostomy and illeal conduit positioned on my waistline, It was for re-occurant 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 illeal conduit lasts for 24hours! and the colostomy is at least twice a day, I cant imagine how people keep fixings on for a week!

I could write a whole lists 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 allways works cos 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- Its the Isolation that I find hardest.

Love and peace to you all
Julia
Posted: Tue Nov 22, 2011 11:49 am
Add me to the group. I have an Ileostomy and an Urostomy. The ileostomy was in 1996 due to a reoccurrance 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.
Posted: Tue Jun 04, 2013 12:40 pm
Lecia (referencing your 2011 post)
I have had a colostomy for over 20yrs & am getting ready to face a urostomy due to progressing spinal cord problems since birth-though I can walk(I both irrigate my bowels & 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
Posted: Wed Jun 05, 2013 4:38 am
                                 
Lecia wrote:
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 night time? 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,

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 its free. I use an overnight drainage bag. How are you coping now ?
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