Life after stoma reversal

Hi Kerzo

Freedom day may be a little daunting, but do get the advice of the stoma team in advance. They will have loads of ideas. And perseverance is vital. It may all work fine from day one, but it will continue to improve at any rate for at least 18 months, if not even longer. I know, cos I’m not yet at 18 months and I’m still seeing a positive change. 

Thanks for your thoughts on this as I am in the same place although older. I’ve read so many negative posts on reversals however I really trust my surgeon and I don’t think that he would have done the op I had. It was long and involved so I want to try. At my meeting I’ve asked if with all the support etc If I can’t manage can I have a permanent stoma formed and he agreed. So I feel I have a get out clause.
Getting rid of the cancer is the biggest  challenge I’m sure we can manage the rest. 
I am really going to go for it and I am interested in your thread 

Hi Kerzo and good to hear that you’re recovered well from the op. A reversal is a much smaller op but the first few months can be testing. Your bowel will work properly but not like it used to! My surgeon described it as ‘getting used to a new normal’ and it may be similar to how your stoma worked eg. Mine was always most active in an evening and that is when my bowel is most active now. 
Im going to attach a couple of links to booklets that you might like to take a look at?

https://bowelcancerorguk.s3.amazonaws.com/Publications/StomaReversal_BowelCancerUK.pdf

This is a thread that was written a few years ago - you may want to skip through the technical side but there’s lots of other good information

https://community.macmillan.org.uk/cancer_experiences/ileostomy-and-colostomy-discussions-forum/f/ileostomy_and_colostomy_discussions-forum/188680/part-2---the-faqs-of-having-a-stoma-reversal

Lastly I would recommend doing daily sphincter exercises as described on page 24 of this book. You focus on squeezing and holding the muscles around your anus as if you were trying to hold in wind then release. After your reversal you will find the urge to go comes on very suddenly and it is safer to ‘hold it in’ until the urge has passed than to make a dash for the toilet and suffer the consequences!

https://bowelcancerorguk.s3.amazonaws.com/Publications/RegainingBowelControl_BowelCancerUK.pdf

Although some days can be testing - especially after a salad or chinese - I’ve no regrets

Take care

Karen x

One last thought from me, something that kept me going. My surgeon told me none of his patients ever regretted the reversal. There were tough times when I thought I’d be his first exception. Then I realised I was going to keep going, try everything, prove him right. That was my inspiration. 

Hi Kerzo,
Just popping in with my experience. I’m a year ahead of you. Diagnosed late 2020 with stage 3, had LAR surgery January 2021 with temporary ileostomy followed by chemo. I had my reversal this year on 9th March almost 8 weeks ago (Op done on Wednesday and out of hospital on Friday).

I did the sphincter exercises beforehand and am convinced this made a huge difference. The first few days after the reversal were pretty grim but within a week things improved greatly and have continued to do so. As Karen advises, I’d definitely recommend holding in any urge rather than dashing to the toilet then going once the initial urge has passed. I feel pretty confident now about being able to control things, although I haven’t as yet ventured too far away from home (I have a big test in around 4 weeks).

After my reversal I went back to the beige diet I had immediately after my ileostomy was formed and since then I’ve been gradually introducing new foods. I eat slightly smaller portions than I used to before my diagnoses. If anything appears to upset me, I plan to leave it out of my diet for a couple of weeks and then reintroduce it. So far I’ve coped with just about everything I’ve eaten - haven’t yet tried a salad or Chinese though. I do have a ‘new normal’ regarding my bowel habits and find I have more trips in the evening after we’ve eaten our main meal.

I expected the aftermath of the reversal to be so much worse than it actually is and have absolutely no regrets.

Good to hear the cancer is in the bin and there’s no spread. Wishing you all the best for your reversal, do let us know how it goes.

Best Wishes,

Net x

I was diagnosed with bowel cancer 23 years ago aged 40. I had a right hemicolectomy and had 20 years of relative normality. 3 years ago I was diagnosed with 2 tumours in the remaining bowel so it was removed.i had a stoma for 18 months and was desperate to have it reversed. Unfortunately 5 months to the day since having it done my life has been he'll. Despite loperamide and codeine if I want to work or go shopping or anything that requires me to leave the house I just can eat anything. I'm desperate. If I eat 3 meals I have between 30 and 40 toilet visits. I currently survive on 1 small meal a day but I am often up in the early hours on the loo. Next week I am going on to a diet of build up drinks which may be gentler on the bowel. I have asked for my stoma back but this has not yet been approved. I sorry if this is a negative post but had I known it would be like this I would have stuck with my bag. I am constantly in pain and sore. Everyone else I know who has had the reversal has had a positive experience and as far as I can make out it's to do with how low down the bowel the tumour is. Please make sure you discuss this with uour doctors before going a head.

Hi Malona1612 and I’m sorry to hear that you’re having such a hard time since your reversal. Have you been tested for bile malabsorption? See page 6 in the booklet below

https://bowelcancerorguk.s3.amazonaws.com/Publications/RegainingBowelControl_BowelCancerUK.pdf

Just a thought

Karen x

Hi Karen 

Thank you for this I will have a read. I have not heard of this before.

hi Malona1612, Ensure drinks which can be ordered from your pharmacist helped me regain weight. I'd lost three stone. My Stoma story started in 2010.  I had two ops in six weeks. The first was a colonostomy the second an illiostomy. Major adhesions on the colonostomy was the reason for the second op. I was advised to have my main meal before 1pm which somehow slowed the output. Lucozade SPORT  was also advised by my Macmillan Nurse as this replaced electrolytes lost. Unluckily for me nothing was of great use and my immune system suffered. Five years later I had another colonostomy  which I have to this day. Cocodamol helped with the pain. I hope your issues get resolved. KathH2. X.

I had my stoma reversal in March 2020. Like a lot of the others who have commented, I just had to adapt to my new normal. I did introduce everything containing fibre reasonably slowly just in case! I have found that drinking anything with a meal results in a quick dash to the loo. That’s because I don’t have the “storage” that I used to have before rectal cancer. I can manage long car journeys and do all of the things I used to do with no problem. Build your confidence up gradually. Don’t be in too much of a rush that you knock yourself down. Wishing you lots of luck. Keep being kind to yourself though.