I'm very sorry that your medical team have said you can no longer have your ileostomy reversed Coconut; this must have been very tough news to receive.

Hopefully some of our members who have been in this situation will get back to you soon but if you'd like to find out how to get a second opinion on the decision that's been made, just click here. Our team of cancer nurses are available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m if you'd like to get their thoughts and advice on this as well.

Kind regards,

Steph, Cancer Chat Moderator

Hello Coconut,

                       this is really tough news and so difficult to accept.Have you been told why this would not be possible,l can only assume that with continued cancer spread, any future treatment would be  limited to slowing spread as opposed to elimination,meaning any unnessacery surgery is now off limits due to fears of triggering contaminated spread.

                                   l lived with a raw bleeding stoma that refused to heal for 14months,which meant l was sticking my pouches onto a raw open wound.l had to rush to apply the thing,after wiping the blood off. l resorted to leaving the pouch in situ and flushing it out if l managed to get one with a good initial stick,but 2 fullk days was its limit,so l can fully empathise with the feeling of complete loathing for this appendage.

                 l would certainly wish to fully understand the reasons for the no reversal call,and make sure of the absolute certainty of no future possibility,so certainly a detailed explanation from your surgical team would seem reasonable,once you have had a chance to assemble all the pertinant questions currently flying about in your mind. It woud have seemed to be reasonable to think that following this,a decision to look towards a second opinion or not ,would have fallen into place for you.

      Short term l can only wish that your treatment gets a grip on any spread without giving you too much further grief,its a real pain when unwanted visitors never know when its time to finally leave,

                                                                         Good luck,

                                                                                            David

Thanks Steph, further phone calls have revealed that it is not as set in stone as my oncologist made me think. It is important to me so once I've had some chemo/therapy, if the cancer shows remission I will definitely get a second opinion. I do think the attitude in our hospital is that a reversal is a purely cosmetic thing, but to me, and possibly many others, it's as important to my well-being as I'm sure a breast reconstruction is to someone after a mastectomy. I truly believe that a reversal date should be scheduled along with the initial surgery, rather than leaving it to the vagaries of an enormous waiting list. 

Hi David,

it has been incredibly upsetting as on my good days I forget I have cancer except for this thing that is as demanding as a querulous baby without the giggles and smiles. I wish they'd have just said it was permanent to begin with because I'd have eventually got over it, as it is I knew everything was perfectly healed three weeks after the surgery and have simply been frustrated ever since. 
 

I think they're definitely worried about further spread and I've told them I know I need treatment first and would obviously wait until I had some remission (hopefully). I'm not daft, but they just seem to have cut me off. I even looked into getting it done privately but c19 put paid to that. In the great scheme of things I'm lucky (if anyone with cancer can be called lucky), but....

I'm sorry you had so much trouble. Do you still have a stoma or have you got rid of it? 
 

best wishes Jo

Hello Jo,

             thanks for asking,l had mine removed almost 5 years ago,exchanging it for a bowel that resembled something that had a hundred a day laxitive tablet habit,being swilled down by litres of salt water.It has taken 4 years for it to decide to rejoin civilised society,but even at its worst,it still got my vote over the stoma.Anyone who thinks a reversal is purely cosmetic comes pretty close to deserving to give one a trial run,and discover the realities of a demanding,difficult entity of whom l cannot properly decribe without contravening the decency standards of this site,but l am sure you will get the picture.

                                         Glad to read that any decision is not set in stone for you,so who knows what the future has in mind for you,just hope that its all good,

                                                                                            David

Hello coconut.

Had to reply to your blog as old as it is. I'm 62, had mid rectal cancerous tumour removed Jan 24th 2023. Got temp ileostomy for 3 to 6 months I was told. After op they said could be upto 18months cos I'm no longer a cancer patient. After complications with the stoma and c diff my reversal has even brought forward. I've looked up all the info on complications of stoma reversal, for which there are many. My worst fear is having to wear a nappy due to feacal incontinence forever. I'm now of the frame of mind that with all the complications I've had, and more to come, I wish they had cut the rectum out and put a full time colostomy on my descending colon  on the opposite side. 1 op, done and dusted. Having had one original op, I'm having a reversal thats 2, and if it fails I'll get a third to fit a colostomy rather than nappies. I too was too vain to accept a permanent stoma on my colon, the colon does a job of extracting nutrients and water before despatch. With what you now have been diagnosed with, I'd consider leaving well alone with the ileostomy. Concentrate on the other issues. Get them beat or under control. The ileostomy reversal is not as straight forward as its lead to believe. It can be risky or cause further issues worse than what you have. I'm not preaching or trying to convince you, but don't beat yourself up over your bag, I hated mine but now I've had it 3 months it's part of me, a reminder to take care, don't get sloppy, life is too short and get priorities right. I hope you keep your chin up, get sorted, and don't let it get you down.

Please respond if you can. 

Wishing you the best

Paul

Hello, I am replying on behalf of Coconut who died in September last year from her cancer.  Good luck with your journeys.

You have my sincere condolences , it was a blog from a while ago, but still all last night and today I've been hoping all was good. I appreciate the reply  and sorry to hear that.

Sincerely

Paul.