New forum for stoma reversal and LARS discussions

This is a fantastic space. Thank you so much

Im not reversed yet though if they are able to reverse my stoma I’ve been told that I have a very high chance of LARS.  

They gave me the option to stay as I am. However I want to try if they find that my join has healed. 

I have read up on the condition in various places so this forum will be really useful for members like me and those managing with LARS 

Great work Steph 

Hi Artsie Ann

Thank you so much for your lovely feedback, we really appreciate your positive comments about the new forum.

I hope it will be a useful space for you and other members to discuss reversal options and issues.

Best wishes,

Thank you so much, Steph. This is a really helpful idea. Is it worth letting the champions on the stoma and bowel cancer threads know to point people here?

Hi Wellspring

Definitely, thank you for your feedback and for chasing me up on the new forum.

I'm planning on publishing a Community News blog about the new forum early next week, I'll also be updating the champs and other groups at the same time.

Many thanks and please do let me know if you have any further feedback or ideas for the Community.

Hi everyone,

Just to let you know that we've published a Community News Blog highlighting the new forum and the support you all share with each other. 

If you'd like to have a read of the blog, or share it with anyone, you can find it here.

Thanks to Wellspring for sharing some great LARS resources in the forum today. It was just at the right time to share in the blog today and a great post to invite people to contribute to, whether it be asking questions or sharing their own experience.

Hi Steph

i had my stoma reversed 3 years ago this November and suffer from LARS . some days like today its a total nightmare .lost count of how many times i  have gone to the toilet , nothing works for long , some days i will go in the morning 5 or 6 times in a row ending with it being loose and that's it for the day , most days its up to 20 times a day , i get a burning sensation and a very sore bum , i don't what to do next life is hard living like this 

Hi nothappyanymore. I’m going to link in a post that Wellspring did a couple of months ago which may help and also a link to a video talk that a gastroenterologist did. 

https://community.macmillan.org.uk/cancer_experiences/ileostomy-and-colostomy-discussions-forum/f/stoma-reversal-and-lars/239980/lars-news

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/general/232375/regaining-bowel-control

Hopefully there may be a few things that you haven’t tried here. Things should have settled down for you by now. I have the odd day like that - I find iceberg lettuce a trigger for example - so try to use soft wipes rather than toilet paper and nappy rash cream. If the burning is really bad then haemroid cream can sometimes help as it has an anaethitising effect.

There is a site on a popular social media page that you can ask to join for people suffering from LARS and some of them irrigate. Could you contact your colorectal nurse to discuss your issues with them or even your old stoma team - mine said they would still be there for me after my reversal?

Take care

Karen x

Hi nothappyanymore 

So sorry to read of your struggles. Your message has prompted me to post some material that I hope is helpful. 

Please check with your medical team first, but when I get a cluster that moves down the Bristol chart, I will take 2/3 Loperamides to show who’s on control.
 
I would add anusol cream and suppositories to address the symptoms.

Please let us know how you get on - there are ways and means to help you achieve a new normal you can enjoy once more.
 

Hi there. As you probably know I’m  post reversal on Friday 2nd September 

On my discharge the ward doctor said 

“ if you get constipated  take a laxative if you get diarrhoea take an Imodium if get pain go to A & E, you can go home “

The nurse four hours later gave me a laxative for constipation caused by paracetamols. As that was the pain relief I had.
I felt confused 

I’ve been sleeping on the sofa as no stomach muscles to get out of bed and I had the night from hell. Watery stools uncontrollably leaking everywhere 

I took Loperamide this morning before breakfast and contacted my colorectal nurse and was told that I should not take any medication and that’s how reversals are. Eat low fibre diet and hope that the loperamide hasn’t upset my large bowel  I have no rectum and my bowel needs to adjust to working again  They want me to stay off medication and try to get my bowel functioning 

So it sounds as if I am not doing so well.
So gratifying to part of this group. 

Artsie Hi Ann. I remember the first few days being quite erratic and I was glad of the sumo style incontinence pads that they had given me as I woke up in a bit of a mess one morning. 
The low fibre diet is a good idea until your bowels have settled down a bit then you can start introducing new foods. My surgeon said that I might have to take loperamide for life so I was taking 4 a day but then my new consultant said that I was constipated and only to take them for special occasions! 
Things will improve over time I’m sure so try not to get too distressed over these early days.

Sending hugs

Karen x