Stoma reversal and parstomal repair

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Hi 

i was given a loop colostomy in Dec 21, after finding out I was advanced stage 4  N1 Anal cancer, iv had no problems with my stoma  infact it’s actually really help as for many years iv suffered with my bowels  always constipated, I do still get like this but just seems to be much easier to deal with having my stoma, I now  have a parastomal hernia which a hate, iv had to change the way I dress, and I have melt downs when going to an occasion as I feel I look horrible in everything I try on it really gets me down, anyway my question is, after have the reversal what should i expect as my colorectal surgeon said I would be going to the toilet 5 to 10 times a day I could leak poo, I don’t want any of that, does it get better or will I have to live like that, I’m going in for a sigmoid scope I think to check if all is ok down there I’m in remission no signs of  tumour but I suppose they need to check to see if there is that chance of leaking just want to talk to someone that has gone through both  reversal and hernia repair, I know everyone is different and we all heal differently but want to know what could possibly happen any advice welcome and thanks for reading 

Laura x x

  • Hello Laura,

    I had stage 4 colon cancer , with a few complications ( sepsis) and a hernia . Anyway , I have had 2 stoma,  one after the other, for over a year, the last one ileostomy and a final reversal in November 22. My surgeon did not mention what is called LARS as a possible side effect: Low Anterior Ressection Syndrome , which is, I assume , what yours was referring to. Not everyone ends up with it. At the beginning, it is as described by your surgeon, but it does get better. For me, it took at least 3 months before I could start working out what may trigger it - I insist on the "may"-, as there are drawbacks!- 

    First: keep a diary of anything you eat or drink.  You must drink a lot throughout the day. No alcohol, well , not just yet.- you'll have good days, no diarrhoea , just clustering  5 times & more at first, but I got it down to 3 to 4 times.= that need to go to the loo, do it, relief, then a few mn later, repeat, like this for a few times. The good part, it is solid & you can control it , unlike darrhoea. It gets better with time once you learn what triggers the diarrheoa, hence the indispensable diary. High fibres are to be avoided, I had to ban green leaves. So I started on pasta, I adore spaghetti, no issue there, I had peas carrots mixed with them, made all sort of sauces. I was told to remove the skin of fruits, tomatoes included. I made some white sauce, dairy is fine with me, I eat potatoes, I was also told underground vegetables were ok for us. Meat is ok too.I have broccoli & start to re-introduce everything , testing it gradually, I have tried preserved artichokes recently, which I love, no problem .I have even re-introduced white wine recently. The 1st time, a very small glass, gave me diarrheoa the next day. I tried again a few days later, no problem. Yesterday, I had Brussels sprouts with a tiny bit of onion, no problem so far. Oh , of course, onions or not, we suffer from a lot of uncontrollable gasRolling eyes. It seems to get better with time, but this is something I have not yet worked out: even with a diet of white carbohydrates ...

    unfortunately, the diet is not always reliable, I do get unexplained  " accidents" , maybe once a week or less nowadays, I may eat the same diet from last week, yet may not get the same result! Some people cannot have certain foods that I have no problem with & vice-versa. You just need to persevere & it does get better.

    For the hernia,, after the operation no more issue, unfortunately we are prone to it, so we have to remember not to lift heavy loads!

    A LARs research team asked me if I wanted to be part of their work, every 2 months for 1 hour, they also can be helpful with advice.

    My bad luck: I just come out of surgery from a ruptured appendicitis, agonising pain, I am 66 & am convinced it was connected to all this.Don't be scared I am one of the very rare few.

    Good luck , don't despair it gets better.& you might be one of the lucky ones who don't get LARS. .Brigitte xx

    Ps: don't hesitate to contact me if you need any support

  • Hi Laura. Thank you for taking the time to send your message to me. I totally get where you are coming from, I’m waiting on the same procedures as you. I too feel very confused and feel very isolated in making decisions. I obviously don’t want a stoma but feel confused that I may be worse if after the reversal. 
    I believe I will ultimately get the revers done if offered but I know there will be plenty of sleepless nights. 
    I’m sure you will make the right decision and I wish you all the luck for the future 

    Eric X

  • Hi Eric, 

    I so want to be back to normal but at the same time do I want to put up with potentially lots of issues!! 

    Just the thought of having to wear a pad cos I’m leaking having lot of pain while trying to go to the toilet, I really can’t decide whether it’s worth it, my main concern it getting rid of this big lump ( parastomal hernia)  which is mentally effecting me. 


    I suppose I’ll just have to wait for the sigmoidscope  to see if I’ll be ok, thank for getting back to me it’s good to know I’m not the only one having the same dilemma. 

    Laura

  • Hi there

    There’s a lot of useful material on this link. 
    Living well with a stoma reversal or LARS

    The reversal is almost always worth having done. And holding on to that as you work through the transition to your new normal is vital. St Mark’s hospital is a brilliant specialist hospital with plenty of research although it can take a while to see them. A few of their ideas are included in the link.  

    There were times when I wondered why I’d agreed to a reversal. But even after over 2.5 years since the procedure, I’m still seeing improvements! 

    And remember to pass your unused supplies to a charity that can make good use of them, such as Jacob’s Well. It’s a great feeling of freedom when they’re on their way. 

    Every blessing
    Wellspring
  • Hi Wellspring, thanks for getting back to me I’ll take a look at the link thank you 

    Laura

  • Hi Bri26, thank you for getting back to me, the diet you was on sounds like what I was on when I first had the stoma just bland white foods, iv always suffered with constipation before the stoma and has been brilliant while having ivdont mind the diarrhoea as long as I can control it and don’t leak just the thought of having no control terrifies me, I’m doing losts of   Research and being able to have communication with others like yourself is really helping. 

    im quite a healthy and reasonably fit person age 55 I had no problems going through the radiotherapy infact I sailed through it just tired mainly, my oncologist was really pleased that my skin and other side effects was more or  less non existent so I’m just hoping for the same with the reversal, I can only but hope and keep positive like I did throughout my treatment. 

    take care 

    Laura x

  • Hi Bri26, that was ment to say stay positive like I did throughout my treatment!! Haha 

    laura x

  • Hi Bri26 and Laura, I too have had the same experience of stage 4 anal/bowel cancer since diagnosed 2021. I am due down to theatre tomorrow ( my 3rd op since being diagnosed)  morning for stoma reversal and repair to a parastmal hernia. Reading your pages has put my mind at ease, and feeling very positiveThumbsupWishing you both and  everyone else a positive and healthier Christmas and an even better New YearEvergreen treeFingers crossedThumbsup

    LOoking forward to being able to drive my car,the freedom of eating the foods I've had to avoid, wearing clothes that couldn't wear, doing some of the things I haven't been able to do and being around people more ,without having to stay close to the toilet all day and night!!

    Maybe even going back to work part time,( after having to close my business down after 25years)

    I know that avoiding heavy lifting may prevent me doing that. 

    At 62, I didn't expect to retire so soon, now 65, maybe I should just that!

    I know I'll be wearing pads for life, but I can live with that!

    will keep updatedFingers crossed

    Geraldine X

  • Hi  Geraldine

    Just wanted to wish you well for your upcoming surgery and to say I hope it gives you all the things you’re looking for. I have 2 permanent stomas so I won’t ever have a reversal, but it’s good to know that reading of others experiences has helped you feel a bit more at ease. 

    Hope you’ll let us know how everything goes when you’re able to-it will be really helpful to others facing this to read of your experience. All the best!

    Sarah xx


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  • Hello Geraldine, great news & goof luck for tomorrow.  

    Don't be impatient about the results, like every surgery, things take time to heal and settle. 

    You 'll gave a few 'accidents ", so a spare  pair of knickers & a pad in the handbag, at all time, to be ready, but honestly you just need patience. I am back to all food now, back to " normal"..

    I am 66 & feeling free again Grinning

    Best wishes for a quick recovery!

    Xx Brigitte