Forthcoming surgery - stoma - terrified :-(

[BasicallySFB]

So - I'm 31, have 1 DS (22 months)

I have stage 4 endo, infiltrating to bowel, pelvis, ligaments and ureters. Have had 8 x previous ablations, excisions and adhesion removals.

Recent MRI showed large nodule in rectovaginal septum which is evident on examination.

Plan is to have whole left side pelvic wall excised, adhesions fixed, ureters stented.

However - cons now saying stoma as 'more than likely' at the surgery for the rv septum nodule.

Anyone got any experience of stomas? I'm absolutely petrified and feel so so sick.

[LadyMacbethWasMisunderstood]

My mother had one for 6 months after she nearly died from a bowel obstruction. Hers was emergency surgery so she was not mentally prepared for it at all. She was 65 at the time. Otherwise fit and well. She had a few dreadful days coming to terms with what had happened but she adapted to the stoma very quickly. Six months later her bowel had healed enough for the procedure to be reversed. It is worth asking your consultant whether a reversal will be possible for you. If it is that will give you something to focus on

The important thing for me to say is that my mum had masses of support offered her in coping with her stoma. She never felt alone in dealing with it.

I can also say that I saw it and it was not at all scary to look at.

Obviously my mum was glad to have the procedure reversed but it was not such a horrible experience as she would have imagined. The practical side of it she got used to very quickly.

I hope things go well for you.

[BasicallySFB]

Hi
Thanks for that :) Glad it was reversible - hopin mine can be but they currently have a waiting list as not seen as high priority :(

I'm just so so scared of the practicalities - what do I do if it leaks? Will it be as horrid as I'm imagining visually? What do I do about DH - physical side of things?

Horrid shock too - gone from 25% risk to 'more than likely' :(

[LadyMacbethWasMisunderstood]

I do feel for you. It was a huge shock for my mum but on the other hand she didn't have chance to worry about it beforehand and she was thankful to be alive.

I managed to find on the Internet a really good article for her - more of a book really - by a man who had one. He discussed everything from swimming to sex. I've had a quick look and can't see it now - this was 5 years ago. But there are lots of people prepared to share their experiences.

My mum never leaked. She didn't rush changing it. She Is a calm and meticulous sort of person and that was beneficial. She has a slight build and I think this made getting it to stay in place easier.

It was totally undetectable under her clothes. The one thing she didn't like was the smell when she changed the bag. Her tip was to suck a peppermint and have a nice squirt of perfume after.

I'm afraid I don't know about the intimate side of things with my dad. But they are still together! If you have a good relationship generally with your DH then I'm sure you will work it out.

She was told that there was an optimum time for doing the reversal - between 6 - 12 months. But that might just have been her case which
was obviously different from yours. I hope someone else with personal experience comes along. But I just wanted you to know that it was an inconvenience rather than something horrendous.

[BasicallySFB]

It does sound manageable from what you describe - and good tip re peppermint and perfume! DH is being awesome and satin it doesn't change a thing which is good - also thinking of using savings to pay for private reversal possibly given that NHS list is 6 months as opposed to 6 weeks which was when she said it COULD be reversed.

I think I just don't want it at all even for a day - but also need to remember that many people have them permanently and are just fine!