You're not alone mate. Had the diagnosis in June. Operation in 10 days. Kinda scary but hey ho. Got to be getting on. 

Drop me a line if you fancy a natter.

Hi I feel slightly silly messaging as I’ve not been diagnosed yet, im

just waiting for a ct scan for suspected lung cancer, I’ve just turned 43 got 2 children 16 and 10 and divorced. I’ve got a new partner of 3 years but I live at my own place but if I’m diagnosed I’m going to move back in with my parents. I’m frightened and can’t sleep at nights waiting. Just hoping it’s ok talking about it 

Hi,

I was diagnosed with stage 3b colon cancer on the 23rd of August, had major surgery on the 30th of August to remove most of my colon and have had an Ileostomy created.

The surgery lasted 7 hours and was initially done with a Robot laparoscopically, but due to having Crohns disease and a portion of my bowel removed when I was 15 ( I am 46 now), the surgeon had to convert to open surgery, hence it took a lot longer to do.

The first few days after surgery were hit and miss, but they put me on the rapid recovery program which means I was up and out of bed the very next day and although I developed pneumonia a few days after surgery, I was back home after 5 days and now 3 weeks on, I am able to move around quite nicely, have got used to having to live with a bag, although we sometimes fall out and am looking forward to the day I can pick my 1 year old and 3 year old back up.

I will be starting IV chemo in October and the prognosis is positive.

I too was and still am somewhat worried about the future as my grandfather died of bowel cancer when I was 5, but have quickly learnt that worrying only passes the time faster and in the blink of an eye, time has disappeared.

Try and keep your chin up and speak to people, don't think because your a man, you can't let out your emotions, I have cried, screamed and punched a few walls in the last few weeks and its a massive help having a couple of close friends that are willing to listen and not judge, although funnily have found a lot of people have gone quiet as they don't know what to say.

If you ever need a shoulder or just someone to moan at, am happy to listen and swap stories :)

Hi Scott In Widnes. 

Completely agree with you about the emotional side. You can't be John Wayne every day. As for the friends going suddenly quiet..... It happens whenever something serious occurs in life. They haven't a clue what to say to you. Sometimes you have to face them down. It's also a great help to speak to people in the same boat as you. Passing on experiences and receiving theirs. The adversity makes a bond. ( it was a whole different scenario but...) 

Would you care to tell me the ins, outs, ups and downs of having a bag? All the gory details? I've got some info from a guy down the local but he's had one for longer than I've known him. I'd like to mix his experience with that of someone who's in the very early stage so when I wake up next week I'll have some idea of what can go pear shaped. Forewarned and all that. 

Cheers

Chris

Hiya mate,

The first thing to remember is everyone's experience will be different with a bag and the experience is also different depending on whether its a colostomy (in the large bowel) or an ileostomy (in the small bowel like mine)

When I first woke up from surgery I absolutely balled my eyes out as I was very honest with the surgeon and quite forthcoming that I DID NOT want a bag and would rather die on the table than have one, luckily enough he ignored me.

My first night with the bag is a blur the nurses managed everything and I didn't even realise they were emptying it for me.

The second njght although fully managed by yhe nurses, the bag burst and went all over me and my wounds, which sent me into a blind panic as it was pretty much brown liquid and again set off the tears of what the future held.

After the first 2 nights, they slowly tought me how to empty it and within 4 days I was emptying the bag myself, although did tend to get mucky hands.

My biggest issue here was I just couldn't look at the stoma and somewhat still cant, but in order to be discharged I had to learn to change the bag and ensure the skin was clean, which after a couple of attempts I seemed to master without having to look too much at this pink thing sticking out of my abdomen.

So the gory bits at home...

1) my large bowel still produces mucus and still need to sit on the toilet and poop it out, you cant really push as it hurts, so you need to follow the contractions of your bowel and let it pass itself.  You will know when it needs to come out as you get the kind of ring sting you get with severe watery poops.  It has a browny / black color, is very watery and smells what you would expect a washed poo to smell like.  The frequency can vary, some days I have to go twice, some days not at all.

2) On 2 occasions since being home the bag has gotten over full and leaked onto me and my clothes, primarily because I either fell asleep and it got to full or because I simply couldn't be bothered getting up.  At first this is horrifying but you soon get used to the need to clean up every now and then.

3) the smell still makes me feel sick, ive found if its watery its a quicker process to change, however if the contents is thicker then emptying the bag can take longer as you squeeze the contents out and the smell gets you, I dont think im going to get used to it to be honest.

3) make sure you choose a bag that isn't noisey, some of them rustle and sound like you have a bag of crisps under your top, im noy ready for most people to know I have one yet, so ive chosen ones made of cotton and plastic with a black covering.

4) showering with the bag off for me is near impossible because it just drips poop everywhere, you can shower with the bags on, but ive found they remain wet, so for now ive been wrapping cling film around myself to prevent it getting wet and just giving that area a bloody good wash every day.

4) Get ready to see undigested food when your draining the bag, onions and tomatoe seeds are the worse for me at the moment, but am going to start trying other foods soon such as peppers or popcorn to see what happens.

5) consistency is key, if you have an ileostomy as I do, then the best you can hppe for is porridge consistency which can make emptying the bag a longer process.  I believe with a Colostomy you can expect we'll formed poops.  It's also easy to tell if you have eaten something dodgy as it comes out like brown water and can quickly fill your bag.

6) Keep it clean and the skin around it.  As much as I hate looking at it or touching it, I know it needs cleaning and have taken to using an old portable shower head to spray it with water when changing my bag and quickly putting a new bag on after drying.

7) wear old clothes for a few weeks as your bound to get poop on them, especially when emptying the bag.  I've found when reaching for a paper tower or tissue to clean the end of the bag, my tshirt likes to go and dip in it on occasion.

My final bit of advice is to stick to your guns and if you find a bag or routing that works well for you, do not let the community stoma nurses change this with their preferred bags or cleaning products.  In Merseyside where I live the nurses are contracted out by a company called Holister and are clearly paid some form of commission to get you on said companies products which tend to be cheaper and make a rattling noise like a pack of crisps.

There is probably loads more I could say but am typing on my phone and trying to entertain my son at the same time.

Take care.

Scott

Thanks mate. That's exactly what I wanted. I suspected most of what you said but now that I know that "*** happens" I'm better prepared to deal with it.

I'll be having a bit of lower colon off. That and my rectum so all that will be sewn up. No more gold award winning farts for me. However the dog won't get blamed so he's winning on the deal. 

I'm, in a way, lucky. It's an early ish diagnosis. I've been given a stoma  kit including a lovely pink stick on stoma and some bags to practise with. That's going to get stuck on this weekend, bag filled with thick wallpaper paste and we'll see how it goes. 

Thanks again.

Chris