Iliostomy or colostomy?

[PaulSmarinecorps]

I am currently on a temp iliostomy as of September 19th 2019. Pathology came back with positive margins and now I am told after this round of folfox that I will have everything removed and put on a permanent bag. My question is had anybody had both and is one better then the other

[Rock_Robster]

Hey Paul, sorry to hear about the margins. Good news that they can deal with it though. I’ve only had an ileostomy, but from folk I’ve spoken to I hear a colostomy is generally considered easier. You only have to change bags once, maybe twice per day, and you can also irrigate if you don’t want to have to do it for a while. Output is thicker so leaks and irritation are less of an issue, and you can use a two-piece system so you can change bags easily without changing the wafer. Obstructions seem to be less common so I suspect the range of foods you could handle might be wider.

There’s probably downsides of a colostomy vs ileostomy too, I’m just not sure of them. I guess it sits lower so wearing jeans etc might be harder? Also perhaps if you leave the house and then have a movement then that’s a bit annoying, whereas with an ileo you can empty before you go and know you’ll be right for a few hours.

Cheers
Rob

[PaulSmarinecorps]

Thanks for the insight Rob!! Looks like we’re the same age in the same sort of boat!! And looks like you have a lot of info and I want to pick your brain!! Looks like we’re on the same sort of treatment also both from the drs and on our own with the CBD/THC it’s the only thing keeping me have any sort of appetite and the nausea at bay a bit with this chemo crap

[Rock_Robster]

Thanks for the insight Rob!! Looks like we’re the same age in the same sort of boat!! And looks like you have a lot of info and I want to pick your brain!! Looks like we’re on the same sort of treatment also both from the drs and on our own with the CBD/THC it’s the only thing keeping me have any sort of appetite and the nausea at bay a bit with this chemo crap

I hear you about the THC/CBD mate. And yep it looks like we have a fair bit in common! Feel free to PM me when suits if you want to throw any ideas around.

[PaulSmarinecorps]

I don’t know how? Maybe send me one and I’ll figure it out?

[mandosquiddy]

I've had both a temp colostomy and illeostomy. If I had to choose one to have permanently colostomy would win be a long distance. Water is absorbed in the large intestine and without a large intestine your output will be much more watery and you'll have a higher chance of dehydration along with (in my experience) more frequent bag changes.

[Rock_Robster]

I don’t know how? Maybe send me one and I’ll figure it out?

No worries - sent. Have a look at your inbox and feel free to drop me a reply whenever suits. If it doesn’t work, just let me know here and we’ll work something out.

I’m in surgery tomorrow so apologies if I’m a bit delayed!

[Cured]

Paul, Make sure you have a Colorectal Surgeon. So that your advice is the best. The best surgeons can often preserve functions.

I am confused by your mention of margins. The idea is that the surgeon removes colon to the extent of finding tissues which no longer contain cancer cells. The same with lymph nodes. We want nodes with cancer to be out of our bodies if that is possible.

Hoping for a good outcome for you.

[GreenLakeGirl]

It might be optimistic to assume that you have a choice between an ileostomy or a colostomy. In order to have a colostomy, you will need to have some of your colon remaining, and if they are indeed taking "everything", that implies that they are removing your entire colon, and possibly your rectum and anus as well.

I agree with the comment to get a board certified CRC surgeon, especially if your previous surgeon wasn't colorectal specific. Good luck!