What to expect post stoma reversal.

FormerMember
FormerMember
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Hi folks, I'm looking for some advice. I had my reversal surgery almost 2 weeks ago after having my stoma for 7 months. I was told to expect some irratic bowel movements but no one warned me that my bowel might open every 30 minutes for 48hours. I ended up totally exhausted with an extremely sore bottom. This has settled down a bit now but I'm struggling to regain control and often have accidents. Also can't seem to distinguish between wind and poo. Is this fairly common? How long will it last for? I have started bowel control exercises does anyone else do these and do they help? On a positive note I am cancer free and extremely thankful.

  • FormerMember
    FormerMember

    Hi Kazza B

    I had this problem at the start of my reversal as well AS many others

     It does slow down   try where possible to clean your bottom rather than wipe it .

     Try a pad as well and that will help

     Part of this now is all about diet

     Experiment  I start with porridge every day it is a slow release food . Veg ,fruit suit me  ask around about diet

     I never take any pills for stopping or when it goes the other way to encourage it

     I eat good old fatty fish and chips or licorice

     It will slow  I have about five  normal movements now in 24 hours 

    I am 4 years out of this cancer now  persevere  you will settle

    Good luck

     Tony

  • FormerMember
    FormerMember

    Hi kazza 

    It all sounds very similar to me at that stage. Eating little and often and fairly bland food is best to start with and get some vaseline based cream for your bum to act as a barrier also treat yourself to some of that Shea loo roll I found I went to the loo and then was there again 10 mins later so my consultant said to sit there for a short time rather than have too many visits. Everything will slowly get better and you will be able to tell when it's wind and the real thing your body just takes a while to readjust and get back into some sort of routine. I am 18 months on now and have no problems at all unless I eat curry ! 

    Sounds like you are doing very well

    Sarah xx

  • FormerMember
    FormerMember

    Been there - well, still there actually - and you really have my sympathy as I know just how depressing and painful it can be.And, yes, I still have problems distinguishing between gas, liquid and solid at times and still have extended 'wind and leak' sessions.Stoma reversal was in Feb 2016 and my bowels still haven't settled down properly. The colorectal people keep trying things but don't really have an answer - "everyone's different" is the usual comment.

    I'm currently on Loperamide (2 in the morning 2 at night) in an attempt to slow down the bowels. My surgeon says that Loperamide is a remarkably safe drug and I really don't like having to take it but at the moment it helps.

    I eventually got put on to a diagnostic physiologist and a physiotherapist specialising in continence (took over 6 months to get there) to find that my rectal pressure has dropped, I have an over-sensitive rectum and my pelvic floor muscles have weakened. I'm now on a set of exercises to strengthen the pelvic floor muscles and they do seem to be helping but it's a slow process.

    I'm also trying the low FODMAP diet which also seems to help as I'm only rarely having a night of 'wind and leak'. I'm on the reintroduction phase trying to find out just what triggers my bowels (i.e wind & leak).

    I've been trying to get on a bowel irrigation scheme but the full irrigation system isn't available at all via my local CCG and the mini irrigation system WAS available up until a couple of months ago but even that's now unavailable as treatments are 'under review'. I may be able to get it privately but I've still to find out the full costs

    I hope you're one of the lucky ones whose bowels settle down quickly but, if not, you will have to keep pushing your local people - don't give up!

  • FormerMember
    FormerMember

    Hi

    It's 2 1/2 years since my reversal.  The first year was a nightmare  as no-one was willing to help.  GP said it wasn't his job and other medics told me to be patient.! 

    I finally was prescribed an irrigation kit which was a godsend.   So sorry to hear it's not available on prescription in some areas.  You could speak to your local healthwatch.  They gather evidence of problems in health or social care.


    A few months ago, someone from my cancer group said she had rectocele which is a prolapse, in women.   I went to my new GP and she confirmed I had it too.  She inserted a ring and now I don't have to irrigate every night.   It only works if I have porridge everyday and plenty of water and veg.

  • FormerMember
    FormerMember

    Hi there I had a stoma for 11 months and the reversal op was last November. I was advised to do exercises to improve control before and after the op and these have been worth while and worth persevering with.  Improvements can feel slow at the time when it is you!  Unfortunately I have ended up needing a further course of chemo which has messed with my bowels but sudacrem cream has been useful to ease skin soreness...... it's not an easy road is it ?!  All the best and here's to being and staying cancer free!! 

  • FormerMember
    FormerMember

    Hi Kazza b, had my reversal 12 months ago. Initially stayed on low fibre diet as couldn't tolerate anything much. Added foods slowly but still struggled. Now told I have anterior resection syndrome and probably as good as it will get with imodium syrup daily, medicine and fasting sometimes. I use the fod map diet as it seems to be better. Trial and error and lots of days/ nights in!!!

    I have a cream from the nurse honey based which is good, better than e45.

    I do pelvic floor exercise as it helps. Also walk, swim and cycle a bit.

    Keep strong

  • Hi,I've just seen your post, and can certainly identify with you! I had a stoma reversal in May, after having a very temporary one-week stoma, and the first couple of days after I got home I thought I might die, and pretty much wished I could! No one warned me that the pooping would be so painful and so frequent - having a hemorrhoid at the same time definitely didn't help. I think the best advice I got, was from my community nurse who suggested that, when cleaning your bottom, instead of wiping it dry, gently dry it with a hair dryer! It made such a difference for me. It got it completely dry, but without the rubbing which makes your skin even more sore. The nurse also told me that, every time you wipe your bottom, putting pressure on it, you are actually stimulating the nerves to make it start up all over again.

    Another thing that helped me, was admitting it was going to be a long haul, and parking a book beside the loo! In a couple of weeks, I got through my entire copy of 'Bill Bryson Down Under' (excellent book - Australia sounds an amazing country). It took my mind off of my circumstances, which was a good thing.


    After a couple of weeks my bowel movements started to settle down, but sadly I've just started my chemo, so am off again on a round of interesting side effects.


    Good luck with all of this - it's not the best of times, is it?

    summerdawn

  • FormerMember
    FormerMember

    As many have said here, don't expect it to get better quickly. I was told that I may have some diarrhoea at first but that my bowels would settle down possibly taking a month or two although it could take up to year. I was optimistic (foolishly as it turned out) and 18 months later I've still got problems - now labelled Low Anterior Resection Syndrome.

    Here's some (other) tips from someone who's been through it.

    Moist (flushable) toilet tissues are a boon - probably lousy for the environment but I think we count as a special case.

    Like many people in a similar situation I'm working on the low FODMAP diet. This is normally suggested for IBS but it does seem to help. The basic low FODMAP diet is supposed to be quite restrictive but I'm eating well on it. The biggest glitch is avoiding onions and garlic which makes eating out a problem - I'm now becoming quite an expert on Ham, Egg and Chips in the local eateries.
    You may also find that eating only a very small meal in the evening helps to leave the bowels calmer overnight.
    Even low FODMAP hasn't completely stopped the wind and one nurse's comment was that maybe I'm just one of those naturally windy people.

    Tests showed that I lost quite a bit of strength and control of my pelvic floor muscles, whether as part of the original Low Anterior Resection of while using the Ileostomy I don't know. I've been put on a set of exercises to strengthen them and it does seem to be helping.

    In theory there are such things as faecal incontinence pads but when I asked in my local pharmacy they looked at me as if I was speaking in Klingon. After some explanation they suggested using standard male incontinence pads but used at the rear.
    The best system I've found to date is to use Tena Protective Shield Extra Light incontinence pads - to give width with (ASDA) extra long panty liners on top. This won't handle heavy soiling of course but will catch those little 'leaks'. Especially useful for those inadvertent and embarrassing leaks when passing small amounts if wind.
    Not easy to find these pads in local pharmacies and the best deal I've found to date is online at http://www.ageukincontinence.co.uk/tena-men-protective-shield-140ml-pack-of-14.html especially if you buy multiple packs.

    I should be going on a mini bowel irrigation system within the next month or so and I'm hoping that will cut down my massive number of visits to the toilet (and reduce our water bill which has tripled since my op!)

    With all the current interest in gut flora I have hopes that someone might do a faecal transplant which would settle the wind.

    Thankfully, I too, am cancer free so at least I'm here to moan about it :)

  • FormerMember
    FormerMember

    Hi Kazza,

    What you describe sounds horribly familiar! I now take Loperamide daily to control loose & frequent bowel movements. Bowel cancer surgery is invasive & damages nerves & tissues involved with our water works, sexual functioning & bowel movements. There is actually a name for the bowel related issues you describe ie "Lower Anterior Resection Syndrome" or LARS for short. It is a recognised condition. Like you, I have hopefully beaten the cancer so I am obviously very grateful for that fact. Nevertheless, such embarrassing bowel issues can spoil & impair life if we don't take control. The sore bottom bit is awful & mine bled on occasions because I had so many frequent bowel movements. You should be able to get Loperamide free as an ex-cancer patient. Good luck!!

  • FormerMember
    FormerMember

    Hi, I had my reversal in Feb 2017, and was told that I would have the problems your having. The thing is no one told me how bad it could be. Two weeks after my reversal I lost a lot of bloody goo, which frightened me, rang 111 as advised they didn't know. After three phone calls they told me to go a&e, that was a waste of time. Saw my consultant last week and explained this and he said I have lower anterior resection syndrome, because I had a bowel resection this can happen. It causes days when I can go to the loo 10 times when on other days 2-3 Times a day. I can't always tell the difference from wind either and have had some embarrassing moments. I started to wear pads but now I wear pant liners, especially when I go out. It also depends on what I eat. This is most things but slightly spicy or rich flavoured foods trigger it off. But have been told it gets better over time but can't put a time on this. I also found speaking to my stoma nurse a bit more helpful than my gp. Like you I'm cancer free, but it's only been a short while, coming up to my first year, still a ways to go but remain positive(well 99% of the time).