Need advice on having both ileostomy and urostomy - any experiences?

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suzy1957
May 18, 2011 8:41 pm

I just have been diagnosed with recurrent bowel cancer, my question is has anyone got an ileostomy and a urostomy. This might be a question that will have to be answered if I get the option after my PET scan results. I would like to make an informed choice on this matter.
If I'm lucky enough to get this option. As it is, I will be getting my whole pelvis cleared. Will it be worth it? Can anyone help me? Please, Suzy x

Past Member
May 18, 2011 11:17 pm
Hello Suzy,
I have both an ileostomy and a urostomy, although mine were not formed due to cancer. Mine were formed due to numerous problems in the past with my bowel, and the urostomy was formed due to having a cystoplasty (implanted bowel into my bladder) that eventually broke down.
I hope you can get advice from someone who has been through something similar to what you are going through. Although naturally, it is very sad that you or anyone else needs to go through this..

Tina..x
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JSKerry
May 19, 2011 10:27 am
Hi Suzy

I have both - a colostomy and a urostomy...both due to colon cancer - stage IIIC. I was diagnosed in 2007 and had the colostomy surgery in June and the tumor removed and urostomy surgery in September, 2007. After radiation and chemo and the surgeries - I'm in remission for 3 years!! Having two pouches definitely takes some getting used to, but after a very short while it becomes your "new normal". Please let me know how you're doing.

*hugs*
mooza
May 19, 2011 3:08 pm
Hey Suzy, I don't have both, but I do a little work in my country. We all become members of associations to get our supplies, and I meet lots of people who have 1, 2, and even 3 stomas. They seem to get by fine after a while, like we all do. I only have an ileostomy, but I could ask for some info if you want! I'm always amazed with what our members have to say. I'm sure you will do fine. Sorry I haven't got the information with me now, but I will try to get back to you. Good luck. Sorry you have to go through all this. Mooza. Australia x. P.S. Yes, it's worth it.
tragicallydave
May 20, 2011 7:32 am

I also. Urostomy/ileostomy/complicated. 11 yearsish. Not cancer for me though. So sorry. Good luck. It is good you came here. I'm better now. It was tough but considering the alternative....

 
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suzy1957
May 20, 2011 8:49 am

Hi there, thanks for your input. If I'm lucky, they will offer me the operation to remove everything. All they did was remove my large bowel last year because if it was completely removed, the cancer would not come back. Alas, it has. I can't get radium because I had the maximum dose in that area, so they can't give it to me again. I just need to know how it works and should I go for it if it is offered? Thank you, Suzy X.

JSKerry
May 20, 2011 10:00 am
Hi Suzy

Double bags work pretty much the same as a single...just takes a little longer. My urostomy used to leak - but I tried different manufacturers and am now using Hollister for both. I tried Convatec, but found that the "Tupperware type of ring" on the Hollister ones work better for me. The urostomy stoma is flush so I use a convex wafer to help "push" it out a little. I use a convex one on the colostomy side too - even though I don't need it - since it's easier to put in place and I never have any leaks...the convex wafers seem to seal better for me. I have found that "less is more" in that I don't use any extras such as special wipes, skin seals, stoma paste, and so forth. I don't use any special soap either - whatever I happen to have in the shower - even the moisturizing soap is fine - I haven't found that it makes any difference with the wear time. I also don't use a hairdryer like some people do to make the wafer adhere better - I just "press and seal" lol. I shower with both - I don't take the urostomy wafer/pouch off in the shower on changing day - it's just too much of a mess since it never stops ...the colostomy I can take off completely on changing day and enjoy my shower with nothing on that side. I usually change the urostomy every third day - the colostomy whenever the wafer tape starts to peel a little. I used closed bags for the colostomy - so there's no cleaning out of them...just remove and toss and replace with a fresh one. I've got it down to about 15 extra minutes for a change of both. You'll find what system works for you - as you get used to the new you. My recovery from the colostomy was uneventful - the urostomy and tumor removal was much more dramatic and painful...made even harder since my husband of 35 years walked out on me when all this happened and I had to go it all alone. I also have no rectum - both surgeries are not reversible so this is my "new normal" lol. Please let me know how you're doing - *hugs*
Past Member
May 23, 2011 5:51 pm
Similar to JS Kerry, I too have both, and my story is about the same. Find what is right for you, giving plenty of time to get used to the new way of life. I carry around an extra of everything no matter where I go in an over-the-shoulder bag, sometimes leaving it in the car. I also use Lomotil before dinners out so that I feel more comfortable and am not always heading to the loo. Most of my bowel was removed; therefore, I go constantly. My ileo-conduit is much better behaved when out or even changing the bag. You'll soon get into a comfortable routine, but relax with it and take a deep breath. Find some sort of humor in it all when things go wrong. Good luck.
Heike99
Nov 09, 2011 7:50 am

I have both a urostomy and a colostomy. I was diagnosed in 2009 with cervical cancer, and I had a recurrence in 2010. I have had a urostomy and colostomy since 2010.

Big H
Jan 21, 2012 4:31 am

Hi Suzie,
While I've had an ileostomy for a zillion years, I recently learned I now have bladder cancer and am undergoing chemo treatment. If the tumor shrinks, I've been told to expect to lose my bladder (and perhaps my prostate) and wind up probably with an urostomy.
The prospect sucks but what can you do...that's life.
I'd be interested in what you eventually do.
Good luck.
H

Irishgirl
Sep 22, 2013 12:06 am

I have had my ileostomy for 2 1/2 years and have adapted as best as I can. Last August, I was diagnosed with high-grade bladder cancer. After 1 year of BCG treatments and 3 surgeries to remove tumors, the cancer is relentless. I will have radical bladder removal within the next couple of weeks. I am terrified that I will not be able to manage 2 bags. I am on the small side, and I can't imagine how 2 bags are going to even fit. I need a serious pep talk from anyone that has gone through this.

Blue guitar
Aug 08, 2015 7:59 pm

Hi Suzy, your story sounds just like mine. I'm also a double bag person, mine from stage 3 colon cancer that also went to my bladder. I use the same products as you. I wish you the best with everything. Will