Potential bowel resection and colostomy bag

[Harpyiai]

Anyone else had this with their endometriosis?

I am only 21, this would be my third surgery. I am honestly losing hope.

[Catness]

Hello / have you joined Nancy’s Nook on Facebook? It’s a closed group and an endo goldmine of information. They have specialist surgeons listed on there that may be able to give you a second opinion.

I’ve been told I need that and I’ve decided no more surgeries as I’ve just had my 6th lap and am going down the alternative path. Xx

[HikerGirl]

Oh woops I just posted on your other thread too! I’m in a similar situation, endo on my bowel. Currently battling with the NHS to get a colonoscopy booked in before they can decide whether it’s a bowel resection or a shave. Are they definitely going with a resection for yourself?

[Harpyiai in reply to HikerGirl]

I do wish you all the best. I am awaiting a MRI but seems that will be the case yes. Thank you for your reply on both threads, reading everyone replies is so lovely and heartbreaking at the same time.

[EKP31]

Hi

I had this done as had rectovaginal endo and the endo was so low down in my rectum that they had to remove 20cm of my bowel and rectum so I ended up with a temporary ileostomy. I only had the ileostomy for 7 weeks and then had it reversed so it wasn’t too bad. I can tell you that it was definitely worth as I couldn’t go on euthanasia my symptoms the way they were. I’ve been left with quite a bad scar on my tummy but that was because my wound kept on opening up and didn’t get restitched. Happy to chat further about this if helpful

Emma

[Harpyiai in reply to EKP31]

Thank you so much for your reply, and wishing you all the best. If you are feeling better then thats amazing, just a horrid experience to go through. Think I am just worrying too much, not nice for anyone to go through. Stay strong.

[Ladyelsie in reply to EKP31]

Emma, how did you find your bowel habit post reversal? I’m due to be reversed Monday and lost 15cm of bowel and rectum also due to endometriosis. I’ve had the stoma for 4 months now and as much as I’m more than ready for reversal, I’m nervous about the after effects.

[EKP31]

It was surprisingly fine actually. I’ve had zero accidents but am definitely very frequent with how often I go to the toilet so I think that’s just the way it is now. I only had my ileostomy for 7 weeks so I think only having it for a short time helped the recovery.

Worst part of the reversal was I felt very nauseous post op so didn’t want to eat but then couldn’t be released from hospital until I had been to the loo but still only spent 3 nights in hospital before being discharged.

Best of luck with the reversal. Really hope it goes well for you and I’m here if you want to chat x