stoma op before treatment

Hi Helen

No words of advice but am having my stoma operation on Friday having been diagnosed with anal cancer just  2 weeks ago, it's scarey times for us both Helen. So much to take on board.

So many emotions but I am going to fight this with the support of my fabulous family. My son sent me the link to this forum and reading about the positive outcomes gives me the strength to fight this

Take care

Gaynor

Hi Gaynor

Thank you for replying. There is so much information  thrown at you and it all moves so quick. Which is good, but agree that it is quite scary.

I wish you all the luck for Friday. It would be good to hear how you get on.

 We can do this

Take care

Helen

Hi Helen managed a couple hours of sleep after being awake most of the night, Saw the Oncologist yesterday who informed me what will be happening, its a good job my husband was there as I missed some of the facts because I was so stressed.

I will let you know how the op. goes on Friday,  very apprehensive but will be strong on the day.

Take care,

Gaynor

Hello @Gaynor2x andHpf2011and a warm welcome to the group.

I have a different cancer to you both, but have a permanent colostomy and urostomy, so do have plenty of experience with stomas! Mine were as a result of a much larger overall surgery for recurrent cervical cancer which meant I needed a total pelvic exenteration-so everything in the pelvis removed, including my rectum and bladder which is why my stomas are both permanent. 

There is a special group for stoma support in the community which you both might like to join. The link is here:

https://community.macmillan.org.uk/cancer_experiences/ileostomy-and-colostomy-discussions-forum/

Can I ask what type of stomas you are having- ie ileostomy or colostomy? And is there a plan for these to be reversed after treatment? There are differences between the two, although of course many similarities, and I can only speak from my experience of having a colostomy. I also have needed no further treatment following my surgery in 2020.

It is a scary thought, having a stoma, no doubt about it, but the thought is worse than the reality in my experience. The nurse will mark you up prior to surgery with a location for the stoma, based on your body shape, what you wear and how you bend etc. Colostomy goes on the left hand side and mine is just over from my belly button, with my urostomy in the same position on the right-a nice matching pair! 

I had no pain from my colostomy when I woke up from surgery-there are no nerve endings there-so when I woke up I I had neat stitching around a circular hole on my tummy. It didn’t work immediately, in fact it took a week for what was left of my bowel to wake up. Don’t be concerned if it takes a little time. I was passing wind (still an odd sensation after all this time!)so there was no concern from my team. 

The stoma takes time to heal and settle so you may see it change shape and reduce slightly as time goes on. It takes a few weeks for everything to settle and for the stoma to be its final shape and size. The hospital will provide all the supplies you need at the start and show you how to take care of it and change the bag. It can take time to find the right bag to suit, but the stoma nurses in the hospital have lots of different types for you to try. Don’t be disheartened if the bag leaks or pushes off your body-this is common at the start. It becomes very easy to manage after a little bit of practice and for me it’s second nature now. Just a different way to go to the loo than most people! 

If there’s anything specific I can help with, please just shout out. Best wishes to you both as you go through this. I’m more than 2.5 years out from mine and managing well. 

Sarah xx

Thank you Sarah H21, I am having a Colostomy on Friday, .

Thank you for your message and positive information,  all just very daunting.

Take care

Gaynor

Gaynor and Helen, welcome to the forum, I am so sorry you have had to find yourselves here but you have come to the right place; there are many lovely people who have extensive experience of stomas such as Sarah who has already given you a comprehensive reply.  I am guessing that you are having stomas as your tumours are in danger of causing a blockage.  I'm afraid I can't give any advice about stomas but wanted to wish you both well in your ops.  

Please come back and let us know how your recovery is going and when the next stage of treatment is due to start.  I won't overload you with advice about that at the moment as your heads must be spinning, but we are all thinking about you both.

Irene xx

It absolutely is daunting Gaynor2x and I completely get that. What I did in my head was focus on the outcome, not the procedure and I found that helped. I didn’t think about surgery, just that this was my chance to get rid of my cancer. I was in so much pain I just wanted to be free of that and thought of it as swapping my permanent pain for temporary pain from surgery which would improve. That was indeed the case for me. 

Sarah xx

Hi Helen, sorry you have need of this forum but so glad you found it! It's been so helpful for me.

I don't have a stoma so have no useful advice to offer. My bestie has one due to ulcerative colitis and she says she vastly prefers it to butt problems and is over the moon to never, ever again suffer through a DRE. She swims, hikes, eats almost anything she wants and has more sex than I ever did in my misbegotten youth!

Hang in there and keep coming back here when you need people who understand what you're dealing with. Before you know it you'll be on the far side and offering encouragement to others!

Suz

Thank you for the link Sarah, will take a look.

I am having a colostomy. They say it is only temporary solution too, just until the treatment is finished. 

Still waiting for my date, but I know it will be soon. Just waiting for the call… 

Glad to hear you are now on the other side and are managing well with the changes.

Just hearing this makes a daunting situation a bit brighter! 

Helen x

Hi Helen, I was diagnosed anal cancer beginning of last November, at the beginning of December I had a biopsy this was when I was told I needed a colostomy, I totally refused, however once the McMillan nurse told me the reason why I need one I agreed 

 my tumour was big and  I was struggling to go to the toilet, she said it’s best I have it as they wouldn’t want to give me an emergency one half way through my treatment, and it would much better having the stoma as it can be less painful trying to go to the toilet because of treatment effects.

when I had the stoma surgery, I was very emotional I couldn’t look at it, I was to frightened to even touch it, after being in hospital for a few days they told me I wouldn’t be going home until I learned to clean and change it, and the first few times I was so apprehensive, anxious but I managed it, by day 5 I just wanted to go home so just dealt with it and told them I’m going home Ill deal with it, which was exactly what I did. After a couple of weeks I got the hang of it no problem and to be honest it was the best Decision having it as iv had so many years of bowel problems I didn’t have to worry anymore everything is working fine no issues. I had my surgery 7th of December and my cancer treatment started 21st of February, I had recovered very well by then.

one word of advice I was told to get big girl knickers but what they didn’t tell me was to wear support knickers as 70/80% of people who have stomas end up with a parastomal hernia, Which is now what iv got, it doesn’t hurt but it really sticks out I’m very conscious of it and having to wear clothes that a big and loose, I’m waiting for my results on second MRI next Friday so I’m hoping for an all clear to have a reversal, I would be quite happy to keep the stoma but now having the hernia I want stoma gone and hernia fixed.

goid luck with everything take care

Laura x x