How to cope stoma and beyond

Welcome to the group!

You’re not going mad, you’re just scared. That’s OK, feeling scared of the unknown is normal. It all gets easier once you’re into the process.

I was told a stoma was an option rather than a certainty. I’m just over 3 months past my radiotherapy treatment. It’s 6 weeks long and pretty focussed, but not awful. You’ll gradually get very tired and will need time off work. You’ll get a sore bum but you’ll be given painkillers and skin treatments which help. Then you’ll gradually get better, your bum will stop feeling sore and you’ll be less tired. I woke up yesterday feeling bouncy and full of beans.

i still might need a stoma but it depends on scan results. People who have a stoma and are coping well rarely post on forums, so you’ll get a much worse view by reading about people who want help. I have a friend with a stoma and she’s fine with it.

keep asking questions and also look for ways to focus on the rest of your life. Cancer is important but it isn’t everything.

best wishes,

Thanks Trish,

I see the consultant next Monday to find out what’s what.  I was told I would need a stoma while I was recovering from having a biopsy.  I think they want to do a stoma as a tumour has greatly reduced the size of my back passage and passing stools is difficult.  It’s the operation for the stoma I am most worried about, I am a big wuss and not a good patient at all.

thank you for taking time out to respond it means a lot right now.

Martin

Hi Martin G68,

Welcome to the online community although I’m sorry that you’ve had the need to find us!

It’s definitely information overload where you are right now, you’re dealing with tests, biopsies, scans, a cancer diagnosis & the thought of facing chemoradiotherapy! There really is no wonder that your anxiety is through the roof is there? We’ve all been in the same boat at some time or another so you’ve come to the right place for support & advice. 

Personally I didn’t have a stoma (if you click on my username you can read a little about my journey on my profile) but there are people on here that have, some temporary others permanent, I think this depends on size & position of the tumour but also different oncology teams seem to operate a little differently too. 

 has explained the treatment perfectly, we all enter into it expecting the very worst whereas the reality isn’t as bad, yes it’s short & sharp but doable & is the opportunity to regain your good health. 

Please feel free if you have any questions or need a little reassurance just ask there’s always someone around here that’ll be able to help. There’s also the General Discussion you may find joining this group could offer you a little more information regarding the stoma op? Just click on the link above & then as you did with this group click the join group option, introduce yourself & post away. 

Just to add, I was diagnosed February 2017, had surgery March 2017 & entered into treatment May 2017 & am at present 18 months disease free & living life pretty much as I was before all this began. 

Nicola 

Thanks Nicola for the reply.

yes you are right, I’m in limbo right now.  I was referred back in June, had a couple of scans and a failed colonoscopy (due to pain of an abscess). Then they forgot about me for 5 months, despite my phone calls etc etc, so I’m a little trust less at the moment.  I can accept the radiotherapy (chemo not been mentioned) it’s this stoma thing.  I can even cope with having one, it’s more the operation to put it in place that’s doing me in right now, I feel I want to explode with anxiety, I can’t relax or focus and sleep is a luxury at the moment.

I have a collection of safe things to think about at night when I wake up and start down unhelpful trains of thought.

My safe things list currently includes: how to reorganise the loft, what to do with the Xmas decorations, jobs that need doing in the garden. Things that I can focus on but are actually a bit dull.

Treat your mind like a naughty toddler. You can’t reason with it, but make sure you’re warm and well fed and comfortable and then with a bit of careful planning you can distract the toddler from having dramas. When I’ve been really bad at night I’ve got up and repeated my bedtime routine, teeth brushing and all.

The operation is a familiar and straightforward one for the surgeon. You don’t need to think about it.

It really does get easier. 

bw

Hi again Martin G68,

I can totally understand your trust issues after being forgotten about for 5 months!! how awful for you!! The standard treatment for anal cancer is 5.5 weeks of radiotherapy with capecitabine (chemotherapy) tablets twice a day alongside, the oral chemotherapy doesn’t have the same side effects as the kind given by infusion, I had no noticeable reaction to the chemo side of the treatment. I felt the same as you, really anxious, but at the thought of going through the treatment, couldn’t eat, couldn’t sleep but once everything gets underway I can assure you things will settle down somewhat. The online community gives you access to (Missing Forum), Ask a Nurse & there’s also the Macmillan helpline if you feel you need to speak to someone. Some other cancer services also offer counselling sessions if you feel that might help, maybe enquire if there’s a Maggies Centre close to you, I was offered counselling at my local Cancer Connections should I require it, it may offer you some tools that’ll help you deal with your anxiety. 

Nicola