Bowel Cancer - Stoma Reversal

FormerMember over 5 years ago

2 replies
117 subscribers
1466 views

Hi All,

I had bowel surgery 3 months ago, and am considering going private to get the stoma reversed (if I can) as I can't wait for 6-12 months on the NHS. I'm 37 years old and really want to speed up my recovery as you can imagine.

However I spoke with my surgeon today and he said that I'll probably never have the same toilet function again. I was never told this before, I was sold the operation that I can return to normal. Can anyone out the give me some reassurances that you can return to a normal toilet function after stoma reversal. I don't want to be nervous when I'm out worried about having accidents etc.

Any tips out there or positive stories to cheer me up today?

Many thanks

Joe

Kareno62 over 5 years ago

Hi Joe

Theres lots of posts about reversals on the board so I’ll attach a link to 1 that came up recently that I attached some more links to!

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer/f/bowel-colon-rectum-cancer-forum/200802/stoma-reversal

Will you go back to normal? My surgeon described it as a new normal - you’ve presumably had some of your bowel removed so that will change things a bit. Have you had the join checked yet to make sure it’s ok? That’s your first step. I would also recommend that you practice the sphincter exercises described on pages 15& 16 of the Regaining Bowel control booklet.

I wont lie - the first few weeks can be a bit grim with lots of rushes to the toilet and loose stools. Your bottom may become very sore and breaking wind can be hit and miss! I had nights when I would be up 6 or 7 times but that’s also when my stoma was most active. Having said that I had mine for 16 months which may make a difference.

Having said this do I have any regrets? Absolutely not! I take 2 loperamide 2x a day although my friend who had a similar diagnosis suffers with constipation. I would say I go to the toilet probably 1-5 times a day usually in an evening. If I have a few cans of lager then I will usually have several visits throughout the evening!

Have a look at some of the posts by typing ‘reversal’ in the search box and come back if you want to know anything else. They say that things can take up to 2 years to settle down but after about 3 months I think it’d got as good as it was going to. Unfortunately there’s no guarantees and there will be lots of different experiences.

Hope this helps

Karen x

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FormerMember over 5 years ago in reply to Kareno62

Hi Karen,

Very helpful. My surgeon used the phrase new normal today also. Not had the mri test yet as I can't get one at my hospital because of Covid19. Another thing I may have to pay for.

Had a low day today so you've given me some encouragement. I'm guessing you did chemo with your stoma too? I've been asked to do 4 more cycles and am a bit worried with covid and the stoma.

I just want to be able to go out and enjoy myself again but that looks like a long way away.

Will take a look at your links. Thanks ever so much.

Cheers

Joe x