Ileostomy reversal

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Not been on for a while

Had surgery in July for stage 3 rectal cancer. Got temporary ileostomy was told it would be reverse in 3 months from surgery had all scans no leeks. Now thay have told me I will be waiting for 2 years because of covid . I've struggling with my ileostomy since I've had it I no it has saved my life . I suffer with agoraphobia and anxiety got c.p.n. nurse to help but I've shut self away againe just carnt cope anore had heigh output loads of leeks and very raw skin don't no how to turn to for help thanks helen

FormerMember over 3 years ago

I would keep raising this and keep asking again. I know COVID has had an impact on many peoples treatment and reversal is seen as non urgent but it’s a much smaller op than the initial procedure. Cours they refer you to a different hospital? Or is going private an option? My husband is desperate for his reversal so we do understand the urgency to get it reversed and feel like you can close everything that’s happened xxx

Kareno62 over 3 years ago

Bop. Hi Helen. Please reach out to your stoma nurse again. There is lots of advice that they can give you about trying different bags and stuff to stop the leaks, making sure that the holes in the bag are the right size etc. They can give you a powder for the sore skin or you try can calamine lotion but make sure it’s completely dry before reapplying the bag. Do you take loperamide to slow the output? Things like mash potato, marshmallows, jelly, wine gums can thicken the output and make it less runny. If your output is high then you must stay hydrated.

Reversals are not high priority at the minute but having said that my surgeon told me that it is a nice little ‘filler in’ operation to do in between the bigger ones so keep chasing it up.

Please don’t let this take over your life. Speak to your stoma nurse or even ring the support team on here on 0808 808 00 00 - there is a lot of help available if you ask for it. Don’t forget the board on here as well

https://community.macmillan.org.uk/cancer_experiences/ileostomy-and-colostomy-discussions-forum

Take care

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

Bop over 3 years ago in reply to Kareno62

Thank you ive tried meds for output

Stoma powder and paste my stoma faces downward. I will try and get my gp to doe a supporting letter about my mental health and hope that helps just don't want to go backwards with my agoraphobia as I'm haveing cbt therapy and it was helping me .thank you helen