Major surgery at short notice

[KenAdams]

I have stage 4 endo including on my bowel. I've been through every treatment and I'm at the stage where hysterectomy and removal of the endo from my bowel is the only option. This may result in a temporary or permanent stoma and I won't know if I have one until I come out of surgery.

I was told earlier in the year that I'd be waiting a couple of years so haven't done much research or begin to come to terms with it as I thought I had lots of time. I've I've just been informed my op will be by the end of the year. Mentally I'm in bits. I'm fine with the hysterectomy but the thought of a stoma terrifies me to the point where I'm not sure if I should go ahead.

If anyone has any advice I'd be so grateful.

I'm sorry you've been through so much and still have this to go through.

i haven't been there myself, but my cousin has, she'd been through SO SO SO much that she was just 'happy' to have the operation as she was in so much pain.

i think she knew she'd have the stoma for sure, she didn't find the stoma too hard to cope with (after the first couple of settling in weeks) various situations had to be navigated around, but it was fine.

she could have had hers taken away sooner but she opted to keep it for a couple of extra months as she wanted to travel to the holiday cottage & (first time in about 4 years) actually enjoy Christmas with the extended family pain free.

as it was, getting it removed & all that involved wasn't too bad and she was 'back to normal' pretty quickly.

i understand you not wanting it, but I've known a few people that have had them & they've all worked out well.

best wishes xx

See if you can get an appointment with the stoma nurse at the hospital. They have a way of explaining things that is practical and makes it all seem very normal.

I have a friend who has chrons and ulcerative colitis who put off a stoma for as long as he possibly could because the idea of it was one he really struggled with

He got it a couple of years ago and now says his only regret is not getting it sooner. Living pain free is worth the (very minor now he is used to it) inconvenience. His is permanent too, possibly because he refused surgery for so long

Would the NHS do this? I'd love to speak to someone about it but surgeons aren't the best people to discuss the practicalities with!

Thank you. I'm really struggling to process it all mentally. I just need to break it down and deal with/research each bit in turn I think.

My dad had a stoma.

His was a result of bowel cancer.

They can be a bit tricky to manage. Most hospitals have a specialist stoma nurse who can help you out especially in the early stages.

You might find these people helpful:

www.colostomyuk.org

For what it's worth my dad worried massively about it, but it didn't seem to be a very major problem. He got a radar key so he could access disabled toilets.

He had to change his diet as he couldn't eat anything that might block up the bag - so no sweetcorn or peas for example.

Yes, absolutely.

It's a big shock but so many people have stomas. Have you come across Stoma Babe?

Here's her Instagram, she also posts on twitter & tiktok https://www.instagram.com/stomababe/

You poor thing OP, you've been through a lot already! I have a stoma, from Crohn's, and honestly the thought of it is worse than the reality. Now for me, I was really suffering and quite ill so was happy to get it in the end but it was a quick decision as I was in hospital and pregnant and didn't want to try a risky new medication that could make me miscarry.
There is lots of influencers I follow that have stomas and they're great and very informative, feel free to DM me if you have any questions x

Yes, the hospital you're having the surgery at will have a stoma nurse or clinic you can talk to. They would also visit you on the ward to explain everything and give you a pack to take home with you.
I know it's only a possibility that you'll need a stoma but, in case you're wondering what happens after hospital, it becomes very commonplace and people work out what suits them best. Pouches etc are usually supplied on prescription via your GP (and prescription meds are free while you have the stoma).

That's really helpful thank you, I'll check out the links and suggestions.

I'm worried about infections too. I know this sounds ridiculous but I'm thinking of writing a letter to my husband and daughter and hiding it. If I'm fine after I'll get rid of it but if I die they'll eventually find it.

Of course, they're all lovely. Can ask switch board to put you through to them, provided you're booked for surgery in the hospital already

Thing is endo is progressive so it's better to do it as soon as you are offered it.

The stoma nurses are amazing and should be useful.

You have got this far. Don't let fear take away your health.

You should be able to speak with a nurse specialist. I would imagine it fall under gynaecology or surgery.

I had a stoma when I was 20. Whilst it was a risk of my original surgery, it was still a huge shock as I developed a post op infection which meant I then needed one.

It took me a few weeks to adjust to having one, and it was tough mentally (I was also seriously unwell which made things worse) but I remember just 6 weeks later, going out for drinks in the evening, and being confident enough to do so. Before I knew it, taking care of it became second nature. I wore all my pre stoma clothes and went on holiday once a month with it. It is a huge adjustment, but you do adjust.

I had it reversed after 9 months and whilst it took a few weeks for things to go back to normal, I’ve had no issues since.

It sounds terrifying, but you do get through it. And it’s only a risk of having one, not a guarantee.

Follow some stoma pride accounts on social media. There are lots out there - it will help you get used to the idea that although life will be slightly different with a bit more planning, life without pain will be full of new and wonderful opportunities that are closed to you now.

@KenAdams

(((Biggest Hugs)))

it's all very scary, you're allowed to be worried.

Write the letters. No need to throw them away later, none of us know when we might be hit by a bus.

& yes, take it bit by bit. Deal with each thing as it happens.

you're stronger than you think!

Hi everyone thanks for your kind words. I have a date of the end of November now. Feeling a lot calmer and trying to be more practical to take my mind off things.

Absolutely no advice, darling. Just wanted to send you love and a hug if that’s alright.

Thank you x

I'm going in today - deep breath!

Sending you huge best wishes for today and onwards.

I hope it all goes well for you OP.

Also sending you best wishes for today