Ovarian / stoma

Hi Chris hell and welcome to the group.

I had advanced cervical cancer so had massive surgery which removed my whole reproductive system amongst other things and left me with 2 stomas. I’ve been living with mine for almost 5 years, which means my surgery was successful and removed all my cancer thank goodness! 

You have been told you MAY have a stoma, but I knew I would have 2 if my surgery had been completed successfully so I checked for bags when I woke up and smiled when I felt them there. 

May I ask why it would be your worst nightmare to have a stoma? To me, mine simply mean I don’t go to the loo any more in the same way as other people and I’m ok with that because it means I’m alive, and seeing my new granddaughter grow. 

You can of course refuse any type of surgery or treatment, but if it’s next week then you don’t have long to make that decision which I understand is a big one. I appreciate we are all very different and this is a very personal choice, but I’ve had these 5 extra years so I’m very glad I went ahead. If you decide not to proceed with surgery, have you spoken to your team about the implications of what that will mean going forward? 

Is there anything you feel you would like to ask about stomas which might help? You haven’t said which type of stoma you may come out with but I have a permanent colostomy and urostomy. 

Sarah xx

One of my tumours grew too big and blocked my bowel, so I had an emergency stoma fitted last week. I felt grateful for still being alive. I presume from what you have said you have been told you have a time limit whether you have a stoma or not? The ward I was on said they have a minimum of 4 people a week having a stoma fitted so it is incredibly common nowadays. My mum had had one for 52 years and it hasn’t stopped her doing anything to live her life to the full. It is a bit weird at first learning to change the bag. No-one knows you have one unless you tell them.

Hi FloC 

I’m not sure if you know about the stoma forum in the community? This is the link

Stoma Support Group

It’s a great place for tips and advice and asking any questions, so please feel free to join in there if you’d like to.

Meanwhile, I hope your recovery from surgery is going well.

Sarah xx

Oh brilliant! Thank you 

Hi FloC 

Just wanted to ask if you have a reversible stoma or a permanent one?  Mine are permanent ones, but we still have lots of posts in the group about both! 

Sarah xx

Hi SarahH21  Mine is reversible colostomy but I’m a long way off thinking about that yet. I’ve updated up my profile.

Hi,

I had a massive op, Cytoreductive and ended up with stoma and I’m so grateful for it ️ it is reversible and has given me a few problems but I’ve nicknamed it and have learned to live with it. You are free to do anything you choose of course but maybe have a word with a stoma nurse, honestly it isn’t as bad as it sounds.

Sending you lots of positive energy

Hi Sarah thanks for replying, it's the whole thing of it I just think it is beyond my scope of what I can cope with i don't think I have the mental capacity to deal with it bodily fluids make me full sick at the best of times. I'm happy for you that you don't have a problem with yours but I know me and I know that I wouldn't want to go swimming or trampolining with it I know that I can do those things but I wont want to. I probably sound like a spoilt child throwing my toys out of the pram and that I should just be grateful for life but I'm obviously not that person. I just don't want it an the idea of needing it makes me feel angry and afraid and like I just want to run away from the whole stupid situation  it would be a permanent colostomy x

I’m so sad to read this…honestly-In love to swim..I love being in the water. I’ve been in the Maldives and been more free in the sea there than I’ve ever felt before stomas. I’ve  snorkelled in the red sea, diving from a jetty and admit I don’t do that now, but I’ve adapted to what I feel able to do. Stomas don’t stop me-being disabled for other reasons (I’m in a wheelchair)  does. But that’s ok…I’ll be happy in the pool in my hotel in Zante in a few months. My stomas don’t define me… I am me despite them, despite cancer., despite 2 bags. 

A few years ago I could never have imagined this would be my life.. never in a million years in fact. But it is. I couldn’t ever have imagined I would have 2 bags on my stomach for the rest of my life. I never thought this would be my reality-but it is. My choice was try surgery or have palliative chemo…I might have had 18 months, maybe more, maybe less. No way of knowing, but definitely my time was very limited.

I’ve had 5 years more-seen my younger daughter get engaged, seen my eldest get married, seen my granddaughter born, and no matter what, these things are priceless to me. 

I can respect the views of anyone not wanting to have surgery, and I’ve seen this many times over the years since I was first diagnosed with cancer. I’m here, and that’s all that concerns me ultimately, where others are not.

All I would say, if you are determined not to go through with surgery, is that you speak up to free up that important theatre slot for someone else who like me was desperate to live. Please don’t let fear stop you living. Life is definitely for better for me than the alternative! 

Sarah xx

I'm not determined not to go through with it ii just wasn't on my radar at all and it's a lot . I am a strong independent woman and I have never let fear stop me doing anything but honestly this is scary and it isn't something I can talk to my family about because I don't want to say my fears out loud and give them energy and I dont want my kids worrying any more than they already are I am very open with them about all the rest of it but I am struggling with this a lot and I don't even know why because I am coping really well with the chemo and was fully prepared for the op I just feel like it's getting worse instead of better an then what's next I don't even want to know what's next my amazing family are 100% worth living for I am worth living for and I want to make the most of every precious moment I get with them but it isn't just me going through it they are all coping aswell and it is like another unwanted gift for them to deal with I feel like the gift that just keeps on giving . Sorry for sounding so negative I'm not usually like this I think I'm having a bad day an with any luck my head will be a lot clearer tomorrow. I really appreciate you taking time to reply to my self pitying rambling it so much to get my head around and it's actually helpful to just let it all  out (who knew) x