My experiences of a stoma reversal

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Hi all

In Oct 24, I was diagnosed with a low bowel/rectum cancerous tumour and in Dec 24 I had a 10 hour operation to remove it, accompanied by an ileostomy and stoma.

I got on ok with the stoma bag; but I always hoped I'd have a go at REVERSAL as it is, surely, the gold standard to aim for? 

fast forward to late October this year and I get a slot for the reversal operation -October 27th Grinning

Operation goes well, the stoma site is stitched up and my large intestine-or what's left of it- is asked once more to join in with the alimentary canal! I can almost see a dark tunnel, full of spiders and webs and dust, unused for nearly a year creaking back into life....

It's been tough, won't lie. I had almost no appetite for 4 days and what came out of my bottom doesn't bear describing -'emaciated alien' is one description-...my sleep has been awful , I've felt nauseous often. But today, 1 week later, I feel green shoots of recovery. My tummy is not quite as tight as a drum and I fancy food!

I've acquired a few tricks and tips to date so if my experiences can in any way help anyone who might be about to undergo a reversal, or be thinking of having one, then please allow me to help! x

  • I really needed to read that, thank you! I'm sitting in hospital right now, three days after my reversal. I've spewed liquid out my back end 14 times in the last 24 hours and even though I'm only five paces from a toilet, I haven't quite managed to make it every time before losing control. I know this is what I have to expect initially and that it will get better with time, but I'm definitely 'having a moment' right now! It's inspiring to read what you said about your progress. Thank you!

  • Hi  and congrats to you on getting this done!!! Yes, those first few days and weeks are a challenge-but you know what, things get better and better . I am now about 6 months post reversal and I visit the loo 3 to 5 times a day-I know things will never be like they were before . But everything is MANAGEABLE , if I need to go I can hold onto the need for a while, I don't get woken up in the night to go and poo urgently ..it's al good Heart eyes

    You will curse andd cry a bit as these days get ticked off , but like me you'll look back soon and think 'Wow!!! So glad I had that done!'` Grinning

  • I thought I would dip back in with an update, in case it's useful to anyone... I'm now four weeks post-reversal and things are looking good!

    My first week was a misery, having to RUN for the toilet on a moment's notice over and over again... but in less than a week my colon woke up and started doing its job again, my output solidified, I started adding regular foods back into my diet, and although I still go to the loo ten times a day (a number that is slowly decreasing) I HAVE CONTROL again!

    My surgical wound is healing nicely, though I'm still rather swollen around the stoma site and I've been told I should expect that to last a few more weeks before it subsides.

    So for anyone who reads this in the future... it really does get better! Slight smile

  •   Great news! Reversal doesn't work for everyone does it, but it's worked for me and it's working for you Slight smile

    In my house I still see the odd colostomy bag lying around, or those black bags, or the little tub of calamine lotion and I cannot say I miss any of that. For anyone thinking of getting a reversal-well it's a tough call in truth and I know that for some, it's a bad move that they regret -but delighted to read of your obvious delight that things are settling!!!!!

  • Hi, i found your post encouraging and worrying in equal measure i think! Im due in for anterior resection and stoma reversal in just over a weeks time. Im bricking it tbh! It sounds like big black pants are in order for a few months at least!

  •   do let us know exactly how you get on -certainly no need to brick it! I would just add that for me , there is a very clear link to 'the more I eat the more I poo', so to avoid multiple toilet trips I am forced to modify my stupidly big appetite!! Or try to, rather Scream But I do not miss the bag one tiny bit.

  • I am counting down the days! Fingers crossed everything goes as planned! I have ordered adult nappies and a big tub of sudocreme....yey.

  • Before I went under yesterday, there were a lot of options discussed, ranging from pretty much no colon left to just my top left corner having to go. And stoma reversal was dependant on how long the colon stuff took. I am pleased to report, I had the best case scenario! So still have about 2 thirds of colon left and a little blue bandage thing there my ileostomy was sticking out! My only concern now is that I haven't been to the loo yet! Plus temperature is a bit high (only low 38's) but concerned about infection....

  • Great news   Heart eyes Best case scenarios are those we so crave for yet too often miss out on.Good for you!!! The loo trip will happen...my first visit generated what I can only describe as a deformed alien ,and that took a day or two Alien