Colostomy bag chances?

[Marisa97]

I have recently been diagnosed with advanced endometriosis. I need an MRI to see how deep the endometriosis has gone into my organs. Basically trying to prepare myself for more bad news. What are the chances of having to have a colostomy bag with advanced endometriosis? Does anyone know? Has anyone needed to have one?

[luthien]

I've not had one but when I went in for my laparoscopy for my bowel endo it was discussed as well as a laparotomy (opened up).

I guess it depends on what they find, when I had it explained a colostomy bag is only used when you have a bowel resection - a bit cut out to have the endo removed as it's perforated the bowel - this means stuff has to bypass that part of the bowel to allow it to heal.

Luckily mine hadn't perforated so I only needed a bowel shave, I think they call it. I was still considered severe stage four. Have you had your first lap as you say you've been diagnosed? A lap is the only way they can diagnose endo as they need to visually see it including the extent and affected organs, If you've not had your lap with an endo specialist then currently it's just suspected, an MRI would still be good.

Hopefully your MRI might help, sometimes you can't see endo on an MRI but they could do say a colonoscopy to see if it's visually on the inside of your bowel - if it's not visible you may be okay. But there's no way of really knowing until they actually operate and take a look, and things could change between scans and a lap.

If they're talking about a colostomy bag you want to check you're having an additional colorectal surgeon present for your lap working alongside your endo surgeon; as sometimes they mention that then take a look and can't do anything with the bowel endo as they need the specialist.

I was really freaked out when I signed for my second lap and complications listed laparotomy and colostomy bag. I think they have to tell you all the things they could do. You could not sign for it but then they won't do anything to the bowel if there's endo. I felt that even though it's scary I'd rather have stuff removed and focus on recovery / having a normal ish life even if it takes longer considering the years of not being listened to and possibly years of pushing for another lap because I was scared. I hope that makes sense!

[Marisa97 in reply to luthien]

Wow, thank you so much. This has been so helpful!

I had my laparoscopy on the 19/12/2019 just to remove an ovarian cyst. However, this is when they found out I have advanced endometriosis, literally spread everywhere. The photos look awful, all my organs look like they’re stuck together. So currently awaiting on an MRI scan to see how deep it has gone into my organs. I know that my bowels are really affected, so i’m just thinking that I may need a colostomy. Which i’m trying to prepare myself for, there are people out there who are going through worse than i am, so just keeping positive

There was mentions of 3 surgeons being present in my next operation, but i suppose I won’t know this for definite until i have the MRI scan.

This has made perfect sense, thank you so much. I am sorry that you have had such a hard time yourself xx

[riddo11 in reply to Marisa97]

Hi! I'm in a similar situation where I had a lap where it was found I had stage 4 and that my bowel is stuck to my uterus. I will be having a gynae and bowel surgeon for my next op, waiting for a date. I was told the same, if they can shave the bowel I shouldn't need a colostomy bag. But if they have to remove part of it, I will need a colostomy bag. But I was told this is temporary as you have another op 6 weeks later to repair the bowel, after which time I shouldn't need a colostomy bag anymore. So worth checking if they expect yours to be temporary or not if it happens, but in my appointment I got the impression they're usually temporary x

[Marisa97 in reply to riddo11]

So sorry to hear that you’re in a similar situation, it’s sucky. Yes, I have also read that it would be temporary x