Anyone had surgery to remove anus, rectum and bladder? 2 ostomies?

I hope someone will answer you soon, @spenbar24 . I imagine how scared you must be. The perspective of having to manage two bags sounds rather complicated.

Sending a hug.

@spenbar24, I updated the title of your discussion and added it to the Ostomy support group as well as the Colorectal Cancer support group. I'm also tagging fellow members like @jlind12 @kenc @hardingv, who don't have the exact same experience, but similar and my have some thoughts to share.

Spenbar, when will you have your surgery? Was cancer found in both the rectum and the bladder?

I’m so sorry that you’re having to deal with this. I’m wondering how old you are. The reason I ask is that usually, in my experience, they will give you the ostomy if you’re over 65. Under that age, they usually try to reverse the surgery. I don’t know what your symptoms were like before they found the cancer, but my experience is that the symptoms of constipation have persisted even though they removed my rectum and did a complete rebuild. The radiation treatment I had 20 years ago has now completely killed the nerve sensation in my back so that I can tell if/when I need to pee so I now use intermittent catheters. I believe it’s also destroyed the nerves that control my bowels so I have to continuously and consistently take stimulant laxatives. Nothing else works. As for your fear of having two bags, I’m not in your circumstances so I can’t give you advice, other than to say that my life was so much easier and simpler when I had my ostomy. Having said that, it also isn’t ideal, depending on your age and your lifestyle. But it’s not the end of the world. You can do this!! Good luck and feel free to ask those questions. Get as much information as you can because that will help ease your anxiety.

Managing an ileostomy, in my experience, was easy. Much better than being stuck in a bathroom for hours because you’re having to take a stimulant laxative to make you “go”. I’m fighting for a reversal now. I want the colostomy!

On the particular issue of 2 bags, below is an exchange from Inspire.com. if you have question that aren't answered here, you might consider joining the Ostomy community on Inspire and asking there also.
EXCHANGE ON 2 BAGS FROM INSPIRE: (I hope this fits)

QUESTION: I've had an ileostomy for about two years and it's been working pretty well. I also have a mitrofanoff (which is a channel made from my appendix that connects my bladder to the outside via intermittent catheterization). I've been getting a bunch of bladder infections so my urologist is recommending a Urostomy. I don't feel like I have any other option but I'm not looking forward to having two bags. I'm 27 years old and I'm really worried about how this might impact my ability to go on dates etc. does anybody have any experience that they would share?
REPLIES:

i have a colostomy and urostomy that i got after my 40th birthday 5 and half years ago. i find the whole having to deal with 2 bags a piece of cake actually. although each stoma is unique and they have their different pouching options and what works for them it still is pretty easy to manage. i have a partner so i cant really say much about dating but i would assume it wouldnt be much different than it is with 1 bag now.
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I've had a colostomy and a urostomy for around 18 years now.I can say to you that a urostomy isn't really much to deal with, once the learning curve has been established. In the earlier times, I was plagued with leaks and skin problems, but with some experimentation with different products and methods it has become just another daily routine with no problems.

I will say, though, that urinary tract infections have been a very common and serious situation due to the nature of a urostomy itself. If you go with a urostomy, bear in mind that your urine must be kept sterile at all times at all cost. Constant use of antiseptic products such as alcohol and iodine are mandatory, otherwise bacteria will find a permanent home in the urinary tract where antibiotics can only temporarily suppress their activity.

[J]

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[reply to [J]reply] James i'm sorry you are dealing with UTI's so much i know how much of a pain that can be. i had 5 this past year between oct. and may! as far as keeping things sterile it is pointless. i'm not sure who told you that was necessary but the ileal conduit that they use for the urinary conduit diversion is a piece of intestine that continues to act like intestine. it creates mucus and has the same bacteria as the rest of our intestines. our urine is no longer considered sterile or clean like most urine usually is. meaning if ever lost in the woods do not drink your urine for survival purposes as it will make you very sick! it is considered dirty because of that chunk of intestinal material used. one of the reasons we are prone to UTI's is due to backflow. this is considered "normal" with a urostomy. we are also just prone to the normal intestinal bacteria overgrowing and that is usually the culprit to a UTI as this is bacteria not meant for the urinary tract like E coli and such. although some levels are normal. things that can help are staying well hydrated to keep urine flowing out as much as you can (within reason you don't want to over do it and flush your system out of sodium potassium and such). limit sugary drinks. control watery stool output as best you can if you have it. this can get tricky at times though.
do they have you on a low dose daily preventive antibiotic like macrobid or macrodantin? these can be helpful.
i dont worry too much about sterilizing things when it comes to my urostomy but i do have the habit of trying to prevent cross contamination and i always address my urostomy first then my colostomy especially when taking a naked shower i wash the urostomy side first and colostomy side last. same when applying my skin prep and wafers. i also wash my hands always after using the restroom but i think that is just a good hygiene habit to have for anyone including non ostomates.
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You have already gone through the hard part. I have 2 bags. When I need to empty one, whichever one, I empty the other also. So it is no extra trips to the bathroom. As you already know, you will need to find the right supplies for you. As for dating, someone else also asked about that when she was looking at getting her one bag. One of the best answers I saw was to say that if a person is judging you by you having a bag, or two, than he is not the right person for you. A loving person, one who is capable of loving you, will look to see who you are and the bag, or bags, won't matter. As we age we all get something we have to deal with. What makes you think he will be perfect.....?

Anyway, you have already dealt with the bag issue and dating. Having a second bag shouldn't make any difference at all.

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Hi, I have two bags too! I have had my first 2012 and second 2013. As a double ostomate we face some unique challenges! I belong to a Facebook private group called Double Baggers Ostomy awareness and Support Group we are over 110 people if you wish to talk to others with multiple stomas please come and see us. Some have mitrofanoff pouches and gone on to have ileal conduit too.
We have featured articles about clothes etc. We are starting a blog this week too.

I had a full LAR (rectum, mesorectum and sigmoid) in January this year. After initial sever LARS, I am now managing pretty well just with the food I eat and how I eat it, like no drinking from 30 minutes before a meal to one hour after. I don't use meds nor psyllium husk. I have more frequent bowel movements than before surgery, but I'm pretty much having a normal life. My LAR was without ostomy, because they used a technique called a 2-step Turnbull-Cutait pull-through: LAR and pullthrough one day, cut the pulled through colon bit and coloanal anastomosis a week later, a total of two weeks in the hospital.

Thank you.

Thanks for the great information. Trying to decide if operation is worth doing for quality of life after.

I think it's important you put in the balance the pros and cons of each option and take an informed decision of what is best in your case.