Questions about urostomies: Operation duration, recovery time, and lifestyle impact?

In this discussion
Replies
10
Views
6907
fishkeeper

Any info on urostomies please.

How long is the operation? How long is the recovery time?

Will I lead a normal life and do things I can't now?

Any info would be most welcome.

Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 33,099 members. Get inside and you will see.

We're not all about ostomy. Everything is being discussed in the forums.

It's a very special community, embracing all ages and backgrounds. People are honest and truly care.

Privacy is very important - the website has many features that are only visible to members.

Create an account and you will be amazed.

Past Member

Hello again. Where to start lol.

Given your present situation, I really think you will benefit from this op.
I think it is good they are leaving your bladder in, it spares very likely nerve damage resulting in no sexual feelings below, amongst other likely issues that they choose not to tell you about.

Hospital stay varies, 7/10+ days. Once you get used to the stoma, life should improve a lot for you, as you will find on here, people try to live pretty much normal lives, everyone is different but without the op many would not be here at all.

Ask your hospital urology to speak to someone, stoma nurse at least, often a person with a urostomy will call or visit you and talk to you about it.

The Welland Aura one-piece bags suit Sue's skin but you will probably try a few different bags until you find the best for you, that sticks well, comfort etc.

Don't be afraid to try different types and do expect failures, knowing they are part of a learning curve, try not to let them get you down.

Sue's worst was 5 fails in one day, it was down to a bad batch, it can happen, as I am sure many on here can attest to.

Keep your night bag in a bowl or something similar, night bags can also leak and do.

I will not tell you how to fit them as plenty of advice is on this site and others, anyway, you will adapt your method to suit yourself along the way.

But ... warm the bag before fitting and know that a tiny dribble of urine just as you are putting it on will cause the bag to fail shortly, you must be dry.

Always have an emergency kit wherever you go, spare bags, wipes etc. It will fail one day, just be prepared.

Be aware that about 50% of stoma patients will end up with a hernia, do some research on this, prevention, early signs etc. Talk to your stoma nurse.

Will your husband be supportive/proactive?

Now would be a good time to order free samples from the many companies on the net (type in urostomy samples), bags 1 & 2 piece, night bags, leg bag, glue remover pads, barrier wipes - these leave a thin protective barrier on your skin around the stoma as urine can/will irritate your skin, stomahesive paste - like toothpaste to form a better seal around your stoma, mattress protectors etc.

Spend a lot of time researching everything about urostomies, bags/types, fitting advice, possible problems etc. Forewarned is forearmed!

Try to get the number of the post-op stoma nurse who will visit you at home, they have more time for you, they are very helpful and are dealing with stomas daily, better than most GPs for information, Sue's GP thought hers was a colostomy and district nurse didn't know the difference!

Keep in mind that urostomy supplies are big business, I know the NHS pay the tab but you are the customer, supply companies want your business and nothing should be too much trouble if you ask for something.

I may appear to be a bit negative but I'm not, just giving you an idea of what to expect.

Is there anything specific you want to know or ask about?

Steve


Gray Logo for MeetAnOstoMate
fishkeeper

Thank you Steve for the reply. It was very useful information. I found it very helpful. I use night bags anyway, and have done for 8 years. I have a catheter for 8 years, no bladder control, no urge, leak constantly. My bladder is very small and overactive. The nerves have been damaged, bladder muscle damaged. I have had other treatments but none have worked. I had 4 operations and none have worked.

So I am hoping the urostomy will give me a better quality of life. My life feels like it is a living hell. Worried about the recovery period at home. Been told it is 6 months plus. Any other info like any pain from the stoma? Can still do the "err love" thing without harming the stoma, clothing, support undergarments. Hernias are a worry as well.

Claire59

Looks like Steve has covered a lot of the bases pertaining to urostomies. Hope all goes well with you. Post with any more questions, there will be some, I'm sure.

bluejewel

Fish keeper,

I see that you live in the UK, so I'm not sure how things are done there, but here in the States, I was assigned an ostomy nurse who helped me with all my questions. It took several weeks to get my energy level back, but after a while, I started feeling like my old self. Hopefully, after your surgery, your quality of life will improve immensely. The healing just takes time. Wishing you the best with and after your surgery.

 
How to Manage Emotions with LeeAnne Hayden | Hollister
tatum

Did you have your urostomy done?

tatum

Hi, what did you have a urostomy for?

coquito

Hi fishkeeper, sorry I just saw your posting today, 7 months after your request. I had a urostomy in 2012, took me over 8 weeks to recover and then had complications of thrombophlebitis in my left leg. But eight weeks will probably make it for you. Lots of water, good meals, and good rest. It is a matter of time. Everybody is different. I thank God every day, I am alive...mine was bladder cancer. Hope you are OK and would like to hear from you. If any doubts just write....

NancyAnn

Hi, I have had my urostomy since I was 2 years old. I have lived a fairly normal life. If I didn't have other complications and my urostomy was the only thing I had, I would be in heaven. I think you will be able to adjust to it. Get samples of different appliances and hopefully you will have an ostomy nurse or someone to talk to. If you have an ostomy support group near you, join it. Hope all works out.

NancyAnn

Hi, I am sorry I haven't been on here in a while but I have had my urostomy for 53 years. I was 2 when I had it and don't know any different. I hope your surgery went well and you are doing okay.

If you have any questions, please contact me. I am not a paying member here but I can send you my email if you want later.

Missymo

I've had mine 5 years. Took me 6 months to get over it. Lots of nerve damage for me but I'd had lots of radiotherapy before then. Good luck. X

All times are GMT - 5 Hours