Stoma

[JustKBO]

Hi there everyone. I’m having my op tomorrow for my first recurrence of OC. There is a possibility of me having a stoma, hopefully temporary. Have any of you had this? What can I expect? I’m so scared but trying to be ultra positive to family and friends.

[Numi]

Hi - hope all goes well with your op. I ended up with a stoma following my surgery in 2016 for Stage 3c, thanks to tumour adhesions on my bowel. At my follow-up with the surgeon who created it, he said it had been a complex surgery and it would be difficult to reverse, so I decided not to even try for a reversal in case I ended up in a worse situation than before and not have unecessary surgery, when I might need to have further essential surgery in the future.

It took a few months to get used to, but once I'd found the best bag for me, it hasn't restricted my life except for when I don't drink enough and get bunged up (a side effect of the Niraparib I'm on). I've been on holidays abroad and in the UK, and ridden most of the rides at Disneyland Paris without incident. I also go to exercise classes at a cancer specific gym twice a week, and do all the 'normal' things like driving, walking the dog and housework (yuk).

If you do end up with a stoma, there's a lot of support available from the stoma nurse you will be allocated, the company that provides your supplies, HealthUnlocked (there is a stoma group on here), and charities like Colostomy UK, who have a phone helpline and also have a closed Facebook group for people to connect with each other.

If you do get a stoma, and I can be of any help to you - please don't hesitate to contact me. x

[JustKBO in reply to Numi]

Thank you for sharing your experience and if it happens and if I need some advice I will certainly get back to you. 🙂

[Jud15]

Hi, I had an ileostomy at the time of my original debulking in 2018, it's temporary and I'm currently waiting to get it reversed. As Numi said stomas are manageable and there is a lot of help out there from stoma nurses, both in the community and immediately post op when they will help you to learn to manage it. Try not to feel too frightened about it, I think it's that fear of the unknown that is worse than the reality. Lots of luck with your op.

Judith

[JustKBO in reply to Jud15]

Oh wow. Thanks for your reply but I thought temporary would be about 4 weeks!!!!!!! I must admit I’m still worried about it but really it is the least of problems if it keeps us “ up and running”. What will be etc.........

[Jud15 in reply to JustKBO]

The original plan was for me to have it reversed earlier but I had a wound infection and that delayed chemo restarting and then my oncologist was very keen for me to have a period of recovery and no intervention. Am now slightly caught up in cross discipline referral back to bowel surgeon as he participated in my original debulking alongside my gynae-oncology surgeon. But I would suggest you check up with your surgeon or CNS how long you might have stoma for if they do have to proceed with one.

[JustKBO in reply to Jud15]

Sounds like you’ve had a rough time. I have to go in at 7:00 am tomorrow. I really hope I don’t need one but if it needs to be done i’ll Just have to deal with it and stay as positive as you ladies are.

[Tesla_7US]

Just, stomas should not be reversed earlier than 6 months. At least this is practice in US. Our colon and intestines absolutely do not like to be touched or handled in any way. This is why repeat surgeries in this area are not common. I had my stoma successfully reversed after 7 months. During my initial debulking after chemo in 2016 I had 14" of my sigmoid colon removed. This made my stoma very active. It was very frustrating having to empty the bag 12 times a day! The reversal went well and it's much easier to use ones regular plumbing 10-12 times a day than having to wrestle with a stoma bag. Be certain you have a bowel specialist do the reversal, should you decide to have one.

[LittleSan]

Hope all goes well today. Xxx

[JustKBO in reply to LittleSan]

Thank you. I’m second on the list so patiently waiting.

[Levanah]

Thinking of you ... let us know how you are when you feel up to it. Sending love 💗 xxx

[Maus123]

Hope surgery went well. Best wishes for recovery, and with the stoma. Don't have one myself but it was a near thing, and could very well be in my future. xx. Maus