Hi AW70 .I’m sorry to hear that you’re struggling. Unfortunately things can continue to settle down for up to 2 years so please try not to get too disheartened. Are you still in touch with your stoma nurse? Mine said I could still ring them for advice after reversal. Do you take immodium? You can take up to 8 a day and they should be taken about 30-60 minutes before every meal. It may also help to keep a food diary to see if certain foods make things worse then cut them out and try and reintroduce them later down the line.
Have you been practicing sprinter exercises? You have to contract the muscles around your anus ( as if trying to hold in wind) and then release. The nurses recommend doing this rather than trying to rush to the toilet if you get a sudden urge which can be risky.
I found that I was getting sore after frequent toilet visits so bought some of the patient cleansing dry wipes like they use in hospital and used those instead of toilet paper and disposed of them in my leftover poo bags - maybe not great for the environment but needs must. Baby wipes are also handy to have and something like sudocream. Haemorrhoid cream is also good as it has a mild anaesthetic effect. Panty liners/ pads are also a good idea.
Really it’s a case of patience and trial and error with your diet but it does get better. I’m 3 years post reversal and have the occasional bad day/night but I generally eat whatever I like - I know fizzy drinks will have an effect and too many cups of tea the same so I either limit myself or know there’s a price to pay.
Ive attached a link to a booklet on the Bowel cancer uk Board about reversal and you might also like to post on the Ileostomy, Colostomy page here. It’s a bit quiet on there at the minute but if you type ‘reversal’ in the search box then it might help,
Hi AW70, I would just like to echo and agree with what Karen has said. I had a reversal 24 weeks ago after a LAR, had the urge to go a lot producing little bits. I did the sphincter excercises and found it helped to try not to rush, hold tight and the feeling might pass. I also took imodium occasionally and one extra thing I took were probiotics, which the hospital were happy for me to do so. After a year out of action the bowel loses a lot of its bacteria, so if you haven't tried them they may help but they dont work overnight. I started to increase fibre a bit at a time to help bulk up the stools.
One other thing I found that as soon as I went to the loo I would want to go again, so I would wait, read something for five minutes and quite often something else would turn up!
It does take time, I expect it is getting you down at the moment but it will get better.
i was reversed in November 2019 , and know first hand what you going through and what you have still got to go through , and to be honest its not easy , i have days when i go 20 plus times a day even now , it gets very sore down there , i have tried the immodium and keeping a food diary but one day i can eat one thing and things are ok and the next time its a nightmare , what you need to do is bulk up your stools so when you go its worth going so i used fibre gel that helps but make sure you are at home , strangely things have improved since last Monday 22/02/21 when i had a colonoscopy taking the lovely drink (lol) and the jet wash with the camera ,i am only going 4/5 times a day and eating loads of vegetables and even fruit , what i can say is things will never be as they were before and its going to be hard going
Hi nothappyanymore. No I can’t say I do particularly. I wonder if there’s a bit of narrowing where they’ve rejoined it? Might be worth giving your Colorectal/stoma Nurse a ring for peace of mind?
Had my reversal in 2013 and had problems for a very long time. (after 4 months I had to go back to hospital because I was losing so much weight as I couldn't retain anything.)
I was prescribed Questran (colystyramine) which, despite being quite unpleasant has revolutioised my toilet habits. I can't go a day without it. You could ask your gp or specialist if you can try it.
If you do get it. The best way to take it is with a 50:50 mixture of water and milk in a small glass. In water it is quite difficult to swallow.
As Karen says, hemmeroid cream can give mild relief. I also use Pentasa suppositories, which are anti inflammatory. (I don't know if they are available in UK. I live in France where suppositories are quite common.) They are brilliant at stopping the dreadful stomach cramps you get with going too much.
Try this out to see whether you have Lars (lower anterior resection syndrome). I suffer from both this and Bile Acid Malabsoption (BAM) hence the acidity. The questran sequester the acids and thickens things up.
I hope this is useful and helps you to improve your life a little.
x
