Ileostomy reversal

I may be jumping ahead as I'm only half way through my chemo but wondered how long it takes to recover from the ileostomy reversal and how much of your rectum you need to be able to function. I had a LARS and my surgeon said I don't have much left but seems keen to do the reversal ?

  • Hi . The physical operation is a lot smaller than the LAR - I was up and dressed the next day and ready to help with the cleaning - until the ileus kicked in! Unfortunately it’s hard to predict how your bowel is going to behave after a reversal - I was told things will never go back to normal but I would get used to a new normal which would be similar to how my stoma worked. My stoma was always most active in an evening and thats when my toilet visits start.

    The first few months are tough and you may wish you’d kept the stoma but things do slowly start to improve for anything up to 2 years. I was told I may have to take immodium for life so things don’t move too quickly through the system. Practicing sphincter exercises are a good idea as the urge to go can come on quite quickly and it’s safer to delay the urge than dash for the toilet and risk an accident (page 15 in booklet below)

    There is such a thing as Low Anterior Resection Syndrome where people really struggle to regain bowel control. I’ve previously found a calculator online which calculates whether you would be high risk for this which might be worth having a look at so you can mention any concerns to your surgeon?

    Personally I’ve no regrets but your surgeon and colorectal nurse would probably be better placed to give you an accurate idea of future bowel function.

    Hope the chemos going ok?

    Take care

    Karen x

  • Thanks for all that information. I'm printing it off as I type. So my first round of chemo didn't go well. I had the IV Oxaliplatin and 3 doses of capecitabine before having to abandon it due to vomiting. The next round I just had Capecitabine and I've completed all 28 doses and am on my week's 'holiday'. My chemo is adjuvant so hopefully the Capecitabine is enough. I haven't been able to speak to my Oncologist to ask yet.Thanks for the heads up about the calculator, I'll goggle that. I read somewhere you can have your rectum expanded before reversal which might be worth asking about. 

    Take care, Carog

  • Hi Carog, I had a reversal 8 months ago after a LAR. I echo what Karen has said but you mentioned expanding your rectum. I think you will find your body will do it for you over time. Not back to the old capacity but enough to stop you needing to go so often and producing something like the old normal. I think it took 5 to 6 months to get there.

    As for the operation, I was out on day 3 with nurses coming in to see me at home for a week. ( I had ileus after the original op and spent 11 days getting it going.)  One extra thing I did, as I had waited a year for the reversal, was to take probiotics to help repopolaute the dormant gut.

    Hope the rest of the chemo goes ok (I had the same as well) and you have a successful reversal.

    All the best


  • Dear John,

    Thanks for your encouraging story. My surgeon wants to see me in September which will be 5 months since my op. I've read the success rate decreases the longer you leave with the reversal presumably cos your intestine gets used to not working.

    I love probiotic yogurts but read I shouldn't eat them whilst on chemo (along with unpasteurised cheese) so I'll start once I finish my last course.

    Take care,  Carog

  • I saw my surgeon yesterday and am now booked in for my reversal for 8th December. I'm so pleased my first surgery had healed well and looking forward to having the reversal.

    My surgeon says the date may change due to Winter flu and increased Covid cases but at least it's something to plan towards.

    In the meantime I have to do exercises and enemas.

    Also have to have a CT scan to make sure there us no new spread of the cancer.

    I'm now going to concentrate on getting fit again ( chemo stopped me exercising!) And getting my gut healthy.

    Take care, Carog

  • Hi Carog.  Pleased you've got a date for your reversal which hopefully won't change.  I just come across your recent post which is very prescient for me.  I've got an appointment for 11th October with surgeon with a view to reversing my ileostomy.  I guess I'll need the contrast enema and scan first to ensure it's possible. I finished my chemo at end of May and had post chemo scan in July which showed no spread.

    Since then I've been concentrating on getting my gut healthy and will now start sphincter exercises.

    Hope all goes well for you, keep us updated.

    Take Care