APeR surgery and colostomy bag

[Becboo7]

hi I am due for surgery for rectal cancer in which I will need a permanent colostomy and possibly rectal excision. Understandably I am struggling to come to terms with diagnosis and surgery needed. If anyone has been through this and can let me know what to expect after surgery I would really appreciate it. Any advise etc. thank you.

[GCCA-Survivor Administrator]

Hi Becboo7,

Good to hear from you again. I hate you are having to go through this. I do not have experience with this in my personal cancer journey. I hope you get many replies from people who have had experience in this area.

I do know many in some of my cancer groups that have the colostomy and are functioning very well with the situation. Some you wouldn't even know it. I will reach out to them and perhaps get some places (sites) you can go for good information and experiences.

Until then, I wish you all the best with your surgery and hope it is very successful for you.🧡🙏👍🤟

~Tom, GCCA Survivor - Colon Cancer Connected Site Administrator.

[Annonymousgirl]

hi there

My dad had this. Luckily he had his illestomy reversed. I cared for my dad whilst he had the stoma bag. My dad is a massive over thinker and anxiety ridden, but once the surgery happened and he had the bag- it was absolutely fine. Immediately after the op, he was actually on lots of pain relief etc so wasn’t in too much discomfort at all. He had lots of help from nurses to get moving etc. when the bag started working he was then allowed to come home!

We had a private nurse change the bag every other day (or I would). It was a breeze! Took about 5 mins! Initially after surgery it took a little time to adjust, my dad was also on quite a few meds (mostly because he had a small infection in his tummy). Because of the meds he was very low for a few weeks and felt quite weak. But after that (about 3-4 weeks) he was absolutely back to his normal self - driving around and going about his normal life.

My dad got soo used to the bag, it was just a normal addition to his life. Soooo many people young & old have them. A lot of athletes also have them. You can swim with them - pretty much do anything you want with it! If anything it can be quite convenient as you don’t spend anytime of day going for a number 2 anymore!

It was a bit difficult getting used to the new diet where he had to avoid any fibre so no greens lagoons etc. but he adjusted very well.

I know it can be a shock and I know how devastating it feels. My immediate family have never experienced cancer & we were all so shocked and horrified at everything. But I promise you time will heal that struggle and this new adjustment will be second nature to you. It’s a big pill to swallow but I promise you that you will get past this initial anxiety and shock and you will be absolutely fine. There are millions of people who I’m sure wish they could’ve had a stoma bag than lost their life. This tiny little button next to your belly button could be seen as a badge that saved you!

I really hope you got 2 or 3 opinions on whether you need the stoma bag for life or as a temporary measure. My dad had 2 opinions and we ended up going with a private doctor who was incredible and pretty much saved his life.

Any questions feel free to reach out. If you’re based in the UK we have a tonne of stoma bags that I’d love to send to you.

Sending lots of love and prayers to you and your family.

Xx

[Becboo7 in reply to Annonymousgirl]

thank you so much for your detailed response! I’m glad your dad is doing well. And thanks I will let you know. Xxx

[bantam12]

My mum had the same surgery and permanent colostomy bag, she had to adjust her diet slightly as some foods tended to whiz through to fast but otherwise she had no problems at all. There are different types of bag to try and you will get lots of help and advice from the colostomy nurses.

[Sunshine8240]

hi Becboo7. Sorry to hear you need a permanent stoma. Is it worth getting a 2nd opinion? 2cm from anal verge is low down and makes it more complicated. But there could be other options. My friend had a similar diagnosis, she found a surgeon willing to try and save her sphincter. However it was so low down he also was unable to do it. They gave her an option of a temporary ileostomy and reversal but would have difficilties with bowel control or a permanent stoma. She decided to try the reversal. As predicted she couldnt control her bowels. But she does an enema every other day which works well for her. She has no trouble with incontinence and had been managing this well for a few years now. It does not restrict her lifestyle at all. She's only young. For her she feels she made the right decision .but we are all different. Hopefully they will be able to reverse the ileostomy for you. But just wanted you to know there are alternatives. Whens your surgery? I am UK too xx

[Becboo7 in reply to Sunshine8240]

it’s on 5 October. Thank you so much for advice. Xx

[alanroast]

hi Becboo7 hi had the bowel cancer diagnosis in february this year after bleeding and odd bowel movements . I was lucky to get a quick appointment for surgery and had the op on march31st .It all went well and although had a fair bit of post op pain am now recovering well and have got used to the stoma bag and slightly different diet ,although can now eat most things ok . I had my first six month scan a few weeks ago and see the oncologist tomorrow for the results so its a bit edge of your seat time .

although Im 75 I feel I have recovered well in such a short time and have now even gone back to the gym a few times a week for light exercise .

there is certainly life after surgery and I hope you get on ok .all the best

[Olaolu]

hi Becboo7... I got diagnosed with the same last year... I am 28 now. Its been a year since I had my surgery. It was scary when I woke up and saw my belly with a bag... But, I healed. I run, play football, and do everything I was doing before.

People dont know I have a bag, cos it doesnt smell, and if properly understood it wont show a bulge through your cloths too. You would surely have the self awareness and anxiety of smell possibility, but eventually you would get used to that question, and you would have understood how to manage it to the point it no longer bothers your mind. I even walk in public now to some degree with no shirt on, and people see it. And i could care less... they dont know what we have been through. But we know.

Its sad some of us had to go through this, but see it as something that ultimately saves your life. Love you! Be strong! You would laugh about it in future.

[Becboo7 in reply to Olaolu]

thanks Olaolu. That is young but you sound really positive. Did you lose your rectum too?