Stoma and Coprophobia

KateTee 1 month ago

2 replies
112 subscribers
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Hi there everyone,

I'm totally new to the forum (or any online forum for that matter!) and I'm really hoping for a little help, if anyone has any advice?

My husband was diagnosed with Rectal Cancer middle of last year and has gone through initial treatment with oncology but has been told that surgery is needed but he'll almost certainly end us with a stoma. The issue? He suffers with a lot of anxiety and phobias. His biggest is Coprophobia, literally fear of faeces and other bodily fluids (urine, blood). He is absolutely terrified of the idea of living with a stoma and regularly breaks into shivers, cold sweats and panic attacks at the thought of it.

Has anyone else been through this at all? I've scoured the Internet and can't find anything about this or anything like it!

Please, please, if anyone can offer us any advice at all, we would be eternally grateful. Life is so difficult at the moment. I'm desperately searching for ways to help get him through this.

Thank you for taking the time to read this.

Lucy1382 1 month ago

Hi Kate- I am very much in the same position and of the same mindset.. I was told I wouldn't need surgery, then told I would, then told they would avoid a temporary ileostomy if possible, then told they would be doing one.. none of this from any different results or change in prognosis. I suffer from emetophobia and fear of surgery in general so I 100% sympathise with how he is feeling, I am also panicking/sweating etc etc.

I've been referred to a psychologist via the Macmillan holistic service- any port in any storm, but am so terrified I can't imagine even the best therapy in the world getting me through it! But you could try that- it might help. Other thing to maybe investigate is if the tumour has really shrunk significantly and he can get referred for Papillon treatment (if that hasn't been explored already) or the less invasive transanal surgery. I get the impression they don't like doing this one much, as it doesn't cover taking out lymph nodes etc and not all colorectal surgeons are qualified to perform it, but it does exist- I'm still hoping I can have this.

So sorry to hear he's going through this, sending you all the best..

KateTee 1 month ago in reply to Lucy1382

I'm so sorry to hear that you too are stuck in a similar situation. Thank you so much for replying. At least we know we're not alone with this. I will share your advice with him and hope it helps to calm his mind a little that there are still options to think about as he feels like he's been 'cornered' and there's nowhere left to turn.

Lymph nodes are a problem as the Team are monitoring some that have been affected. We're just keeping our fingers crossed.

Wishing you the very best possible outcome . x