Surgery & Permanent Stoma

Hi there...

I had exactly that surgery in 2012. It was scary as a lot to understand and, of course, you feel pretty rubbish too...BUT I can only state my own experience and after about 2 weeks post surgery it was liberating.

Yes it is life changing but hey...cancer is that too yes? So to be able to be pro-active in accepting your permanent stoma give it a name when it is 'born'...talk to it and make friends with it.

Your stoma can be your bestie or the opposite...my stoma is called Jackson and he is absolutely my bestie.

I am not making light of your situation, been there, had the terror...but life is easier with a stoma than you can even imagine at this moment.

I send you a positive vibe...you can do this and come out with a smile and a new friend, your stoma...GOOD LUCK...stay in touch as would love to know how you do. Jane

Thank you so much Jane. It’s nice to hear someone with a positive experience.

im trying to be positive and mentally prepare, this is easier some days and harder on others.

i will keep you updated once I’ve had the surgery

Darren

Hi Darren

I found indulging massively in some good old misery on bad days made the good days feel even better. It means you are strong, can be sad, angry and despondent sometimes, but still recover and enjoy bright times.

All totally individual experiences and emotions, we are all different I know but we do all have each other to 'meltdown' to on here with no judgements at all.

I may well share a dim day on here myself sometime.

All the best wishes poss Darren.

Hello

I had emergency surgery in April, and woke up with a stoma, permanent. I had no idea about stomas, ostomies etc., and was a bit shocked by it all. Like you I am a private person who wouldn't normally talk about these things.

However, I realized pretty quickly that if I look after my stoma, she will look after me. Similar to , I named her on the first day we 'met' and I have found this  really helpful. My husband is very supportive too, and it enables me to be very matter of fact about the situation.

We are very lucky here in the UK to have stoma nurses, support forums, and our supplies provided for us free of charge - and that is a great weight off the shoulders.

I have found it relatively easy to get into a routine. And on a practical level, I have also found a good supply of ostomy underwear, recommended by a forum member, vblush.com - they do men's and women's. A member of this forum recommended a brilliant book about exercise post surgery and with a stoma - The Bowel Cancer Recovery Toolkit by Sarah Russell, which is a brilliant, positive and proactive book, it has been one of the most uplifting things I have read. And another great online resource with videos and loads of information is veganostomy.ca - whether or not you're vegan it is worth a visit, it is Canadian, so there are some differences between here and there, but I have found it a mine of useful information.

And then there is this forum - which has been amazing to be part of, helpful, empathetic, full of practical tips, and friendly.

Good luck with your surgery, and thinking of you.

Best wishes.

Hi DazBar,

Welcome to the group. It's pretty daunting what's ahead of you, but please don't worry too much about it all - you will have a fantastic team supporting you all the way through your surgery and beyond. I didn't know what a stoma was until my surgeon gave me my diagnosis and he spoke of the surgery I was to have. It was all very daunting when it was all explained to me what I was about to go through. 

I had read that some people named their stomas, and I too named mine - Winnie. I did that so that when I was out and about, if I needed to tend to Winnie, my family and friends would know that I would probably be a bit longer in the loo than usual! The surgery itself went ok - mine took around 8.5 hours... a very anxious time for my family, but for me it was over in a whizz! I was in hospital for 11 days, and when I got home, it was a bit bumpy at the start but things started to settle down and the healing process began. 

Living with a stoma becomes second-nature to you very quickly - you learn how to adapt, and you get into routines. You learn all about the effects that different foods have on your stoma, but please don't think that there are foods that you won't be able to enjoy again - you should be able to eat just about anything, but might have to be more careful with some foods. 

In the early days you will be limited to what you can do, but you build up your strength and before long you'll be back doing just about everything you did before. No-one needs to know you have a stoma - I started a new job nearly 6 years ago and to this day only 2 of the 20 women in the workplace know about my stoma - I chose to tell them. 

My diagnosis was in April 2012, chemo and radiotherapy June - July, then surgery in September, and back to work the following January (office work). 

Hope this helps a wee bit, but if there's anything you want to ask, just ask!

Take care, and I hope your surgery goes well.

Linda :-)

Thank you ever so much, I will certainly look up that book

Darren

Thank you that’s soo helpful

Darren

Hi there

I had APR surgery in April this year for colorectal cancer and I remember well all the questions and worries that you are presently experiencing. You’ve already had some great advice so I won’t go over the same ground. What I will say is that you will have highs and lows after surgery but as the days progress and you start to heal you do come out ok the other end. I was horrified at the prospect of having a stoma, but even I have grown to be almost proud of it and what it stands for. It may be odd to hear, but I thought it would be the main event dealing with it, but in my case, it turned out to be a damp squib, as it’s not nearly as bad as you think, you get used to it pretty quickly, and if you look after it, keep it clean, you’ll be fine. I urge you to make friends with the stoma team, they will become your best friends, and make sure you get solid advice re hernia potential as in the early days you need to protect and support the area.

One result of the surgery is the perineal wound downstairs, I’m sure I speak for many here who have had this type of surgery, there’s not much said about the recovery process and experiences. Make sure that the team get you a Valley cushion to sit on, you’ll need it and not a donut! This wound takes time to heal, but as you hit each milestone with it, you feel very proud of yourself. Don’t be afraid of pain management as it helps recovery.

Just before surgery and your anaesthetic, you get what used to be called a premed shot, which they called “Champagne”.. enjoy, that is something to look forward to :-)  

Take a book, iPad, mobile whatever in with you during your hospital stay, to keep entertained and in touch with people. 

Be patient during recovery, don’t panic at every problem that comes along like I did, because the majority of the time, it turned out fine and had a simple cure. Be good to yourself and stay positive. Don’t be afraid to get help/advice when you need it.

One last thing. After surgery when I had mentioned about my life prior to surgery and a stoma, my daughter said to me, “don’t look backwards Dad, you’re not going that way!” And I don’t any more, in fact I’m more positive about things this side.

Good luck with it all and your journey. The McMillan community is here to help contact us again as and when you need support and advice!

Steve

Hi Darren, your post was very timely as I too am just about to have surgery and perm stoma.  So seeing the responses has been really helpful.  My operation is this coming Thursday and it was only confirmed this Wed!  I hear most ops are pretty short notice now, so worth being aware of as was much sooner than I expected! Less time to worry I guess.

Given we are going through the same thing might be good to keep in touch?

All the very best for the 'll when it comes

Bruce

Thanks Stevejhb will the team give me a valley cushion or is this something I should buy in advance?

Some great advice