Stoma reversal

Hi everyone,I have just joined the group.I thought I would share my experience so far.I was diagnosed with lynch syndrome 3 and half years ago.I started having radio therapy over the Xmas period of 2019 which managed to shrink my bowel tumour

I then had 10 sessions of chemo which of course is pretty toxic for the body in fact my nerve endings on my feet never returned to normal but I have managed to live with it..I then had surgery and have had a stoma for 3 years whilst awaiting a reversal which I have just had on Wednesday 23/3/22.(of course the covid madness arrived which delayed everything)so here I am learning how to use my bum again (sore at the moment)It’s been good reading other peoples experience especially the food diet etc,I am coming upto my 69 th birthday but I wanted to have the reversal to try and get back to some normality but I can see it’s going to take time.

I thought I would share this in case others in my age group are wondering what to do,I appreciate we all have our own ideas on this subject and thanks to all who have posted as it makes decisions I have to make regarding diet etc a bit easier

Love to all

  • Hi and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    Thank you very much for taking the time to write about your experiences to date and I'm sure that others in a similar position both now and in the future will find it helpful.

    I hope that everything continues to go well for you.


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  • Hello Summer of 76.

    Great year for me too!

    Thank you very much for sharing your experience, I read but rarely contibute to the useful messages on this page. Thank you McMillan nurses!

    Since March 2021, I have colon cancer and a stoma, which I was told at the time would be permanent and I finally accepted it.  . However, at my pre-op assessment last week , I was told that, as my body responded so well to the chemo and radiation treatments ( I was stage 4 with metastases on the aortic lymph node and other lymph nodes), I will have an hysterectomy (some organs were touching the tumour) and an ileostomy, instead of the stoma, during surgery on Wednesday 06/04/22. The surgeon may decide to reverse the stoma should all go well! That was so unexpected!

     I am aware that the rectum does not function as well as before and most people have issues- despite the exercises- with either incontinence or near enough, as they have to know where the toilets are wherever they go. I am not yet sure I will have a choice between "stoma or rush to the nearby loo..." but this is in my thought!

    So thank you Summer of 76 for being positive about it! It does help! I am 65 years young and intends to make the most of my rebirth after the operation!

    Lots of love

  • Hello Summer of 76 & Bri26,

    Sorry for this late reply, I haven’t checked this forum for a few weeks.

    I had my ileostomy reversed on 9/3/22 & thought I’d share how it’s been for me. I had LAR for bowel cancer in January 2021 with temporary ileostomy, followed by chemo (advised to stop after 5 of 6 sessions due to proctitis).

    The first few days after the reversal were pretty grim and I did use incontinence knickers and had a very sore bottom (I used Water Wipes, Vaseline and Sudacrem).  However, after the first week I reverted to normal knickers, but had to go to loo very frequently.  I’ve been careful about what I’ve eaten and started with a fairly beige diet and am gradually introducing other foods so I can monitor if anything upsets my bowel.  Things now seem to have settled down dramatically and is very manageable (Fingers crossedit stays this way).  Eating my main meal at lunchtime might be better but I choose to have my main meal in the evening (with family) and then usually have a few trips to the loo before bedtime.

    I did do the sphincter exercises advised fairly regularly before my reversal which I’m convinced helped a lot.  Up to now, things have been so much better after the reversal than I ever imagined and so pleased I went ahead.  I’m also 65 years young!

    Love to all,

    Net xx