would like a stoma reversal....

Hi Marie B102697 

I'm sorry to read about your recent experience .  That sounds like very major surgery which I have to be honest and say I've no experience of.  However It does feel like very early days in the recovery phase for you.  From my own experience it took at least 4 months to totally get to grips with and feel more at ease with my stoma, which then gave me a better perspective on how I felt about it.  In the early stages I really felt that I'd never leave the house again and would need to live on Rice Krispies and macaroni cheese forever.  That all changed over time though and I'm now living exactly the same life as before - eating out, travelling abroad, looking after 2 grandchildren (toddler and baby).

I think what I'm saying is give it time.  To help with output eat little and often, splitting meals over the day. e.g Toast for breakfast followed by a banana at elevenses, soup or a sandwich at lunchtime followed by some fruit or a biscuit mid-afternoon and then a main meal at tea-time followed by a yogurt or scone or pudding etc later in the evening. Introduce new foods gradually (try a little bit of steak or whatever else you fancy and chew well). Contact your stoma nurse, or come on here, if there's specific questions or problems.  There's folks on here who have lots of knowledge that they're very happy to share. And I think that most will say that it gets easier.

In terms of the reversal I think you need to be guided by your surgeon or oncologist, especially if treatment is ongoing. They are best placed to comment on your own specific situation and I'm sure that they too would also offer good advice should you decide to go down the private route.

For my part, I was offered a reversal in 2022 (original op was LAR in June 2021 and at that time there was doubt raised about reversal).  After lots of thought and discussion I turned it down, primarily due to extremely sketchy information as to how things might work out with bowel function afterwards and then the realisation that my stoma seemed to be doing a good job and behaving itself despite my early despair. Entirely my choice though and I'd imagine that I'm likely in the minority.  I met with a new surgeon earlier this year and he said that the door is still open should I change my mind.

I hope that the following weeks start to feel easier.  It's a steep learning curve in the early days, not helped by obvious anxiety and worry.  Just take your time to navigate a path through it all and don't be hesitant at asking as many questions as you like.

Good luck and take care  x

Hi Marie wow you had been through a lot plus still on going my advice is to take stock of what you & your body had been through and give things time plus you may need further procedures possibly? I recommend giving it time to adjust & settle into a routine when you don’t need any further surgrey or procedures & your feeling more stable you can think about the reversal you need to listen to your consultant too as he is the expert in this area & have your welfare in mind. I had my reversal August 2024 eight months after surgery due mainly to the NHS waiting list as could have had it done after four months up to you if when ready you choose to go private I must say it’s been a long recovery to my bowel system after the reversal we are all different but for me it’s taken the best part of a year to recover I am not back to what I was & don’t think I ever will be having to deal with problems at times & stay away from spicey dairy or fatty foods oh & alcohol or at least limit them but I am getting there & living my life with 5 holidays this summer as retired in April sorry if I had rambled on & on I wish you all the best 2 points please take your time to recover & ask for help or advice when required from consultant & team or GP or anyone you want take care 

Hello Blue Blue thank you so much for your wonderful advice!  and you sound amazing looking after two grandchildren.  Yes I guess I will have to be patient.  It's only been 7 weeks since my op.  I will just have to wait until I know what treatment on my liver is needed and go from there.  Take care and I will definitely be back on this page.

thank you so much for the wonderful advice.  I really do appreciate it.  wow you had your reversal 8 months following surgery.  I reckon mine will be a year....but like you say everyone is different.  it will all depend on what happens with liver treatment and how long that will last.  Best wishes.

The confidence will come. Just take it slowly. It may take a while before a decision on reversal can be made by your consultant, and hopefully you'll get very positive news on that front, but try not to put your life on hold in the meantime. Concentrate on looking after yourself and staying fit and well. Come back on here as often as you'd like. There's always someone who can offer advice or point you in the right direction I've found. They're a great bunch!   X

Hi Marie, 

I have had two temporary stomas, in both instances my surgeon said they could be reversed at 12 weeks. My second  temporary ileostomy was a high output stoma, and it was a nightmare living with it - I did not tolerate large doses of Imodium and found the 'eat marshmallows etc' advice did not work. I was massively relieved when the stoma was reversed. I also afterwards realised that I'm sure I was dehydrated most of the time I had the stoma. By sounds yours is also a high output stoma, so I have sympathy! All my surgeries were done privately on insurance. Just to say, I also got NHS opinion during my years living with cancer, and privately they definitely are more prepared to offer you other options and quicker to do things. If I was you I would get a second opinion on the reversal. At least know your options. I know for me it was life changing getting rid of the stoma! Best of luck! 

Hi Babotie yes a high output stoma can make you very dehydrated and I'm drinking 400mls of dioralyte a day.  I just wish it would settle down.  A lot of it is trial and error too.  I had a mocha on Sunday and that was a big mistake so that's off the list for now.

Hi Marie, the one thing that did help me somewhat was Metamucil - which is basically a soluble fibre, how it works is it thickens the output and slows transit. It is used in the USA and Australia for high output stomas. But of course talk to your CNS/medical team about it first and what dosage. (my colorectal surgeon was ok with me using it). All the best.