Does anyone have experience of pelvic exenteration.

[Laurie33]

Last July I was diagnosed with grade two cervical cancer. After chemo, radiotherapy and brachytherapy I got the all clear in March this year.
Unfortunately it didn't last long and the cancer is now back. My surgeon is planning a total pelvic exenteration. This will mean the removal of my bladder, lower bowel, vagina and all reproductive organs.
After the surgery I will have stomas for colostomy and urostomy. My vagina will be reconstructed by a plastic surgeon.
I'm interested to know if anyone has any advice or tips. I'm terrified about living with Stomas. My dh is being so supportive but it's a very real possibility that sex will never be possible again. I've told him he should find someone else who isn't all useless and broken. He told me not to be stupid, that we will face whatever the future holds together.
I'm only 52 and like to think I'm fairly trendy, will I ever be able to wear fitted clothes again? can't believe that with everything that's happening I'm even thinking about that.
I've got 6 dc, the youngest is only 7. This op is my only chance of survival and only a 50% chance at that.

oh Laurie

I wish you luck, you sound very brave.
hopefully someone else will come who can help your thread query

Sounds really tough Laurie33. Lots of people live with two stomas. It's obviously tougher than just one, but plenty of people carry on working and exercising. Support groups like the Colostomy Association have a wealth of information on positive living after surgery.

Thanks both of you.
I didn't realise there are support groups. I will look onto that. My specialist nurse is helpful but I want to know the nitty gritty from people in the know.
I just spent 10 days waiting for scan results to see if it had spread outside my pelvis in which case it would have been terminal.
I was so relieved to hear it is still operable that I don't think I've quite taken in just how serious the op is and how it may change my life.

are there blogs about too? great result on the scan. Hope you're doing ok.

Many years ago in my nursing days I did look after patients undergoing this kind of surgery. Of course it's tough. What I do remember is that the stoma nurses I knew were right up there amongst the nicest people on the planet. I would think this is likely to be common because it's not the most glamorous of jobs. They will support you through all of this ( and all the other staff, of course).

So, sorry not a personal experience. It might be possible via Macmillan or similar to find someone who has been through this to talk to.

And no, neither your fashion days nor your sex life days need to be over. There are many ways of being able to participate and enjoy both even if adaptations are required.

Sending you very best wishes. Let us know how you get on. Xxx

Sorry to hear you are going through this.

My aunt has a stoma. She showed me, it was small and neat and fitted well underneath her clothes. She never wear baggy clothes, but is very fashion conscious, having worked in a boutique all her life.

Good luck to you!

Both the Colostomy and the Urostomy Associations can put you in contact with someone who's had the same surgery.

The Colostomy Association has a closed Facebook group which is a great place to talk to others, if you search for it and ask to join they'll accept you straight away.

You'll be able to wear exactly the same clothes post op as you do now, I've got an ileostomy rather than a colostomy and no one would ever be able to tell.

Good luck with the surgery, it'll be tough for a few days but with enhanced recovery you'll be up and walking much sooner than you think.

I've had a colostomy for a number of years following rectal cancer. I had a number of major operations including one to repair my seriously fucked vagina. It was only a partial rebuild but it has (more or less) worked. I was in my early forties. I am able to have sex but sometimes part of it is very uncomfortable or there is pain.
I wear normal clothes. I have slightly adapted what I wear but I still look like a normal knackered working mother of my age (late 40s). What you may have to do is to adapt is where things fit on your abdomen. For example, I struggle to find trousers that fit well so I wear more leggings and longer tops. I wear dresses rather than skirts/trousers to work. I wear tights with a light control top so they hold everything smoothly, and when I'm going through a period of bloating, I buy a size up so it's all still comfortable. But all this depends on the precise siting of your stomas. Mine ended up precisely on the trouser waistline.
And yes, I wear Bridget Jones pants. I know from on-line chats with other ostomists that this is pretty much the norm. Hey, I never have a vpl ;).
Your body will be different after the surgery but you will be able to adapt. Some things will be very traumatic and take a long time to come to terms with. That's normal. And when you go on-line you will mostly find the "moans and whinges". That's because we only come on line to talk to other ostomists when we have a problem. It's not because all life with a stoma or two is shit. It's not.
Do join the Colostomy Association FB page. And from there you can find all sorts of other resources, and you will find people who have had your op.
Good luck OP

My aunt had a colostomy when she was 50. She is the most elegant person I know ( and very lovely). She is slim and stylish. She has had a few ops over the years but has recovered well each time. And she will be 90 next birthday.

Thanks everyone. Great advice on here and the stoma thread. It is very scary but not as terrifying as the alternative