Finding support for stoma reversal and LARS on the Online Community

Finding support for stoma reversal and LARS on the Online Community

The Ileostomy, colostomy and stoma support group on the Online Community is a place where members can support one another through surgery, managing a stoma, diet tips and keeping comfortable. Following surgery for bowel cancer, colorectal cancers, other cancers and pre-cancerous conditions, some members have a permanent stoma, others may have been offered a temporary stoma.

When you have a temporary stoma, you might be offered a stoma reversal. Members recently asked if we could provide a dedicated space for conversations around stoma reversal and Low Anterior Resection Syndrome (LARS). We’ve responded by adding a new forum to the Ileostomy, colostomy and stoma support group called the Stoma reversal and Low Anterior Resection Syndrome (LARS) forum.

The new forum which you can find here provides a dedicated space for conversations around stoma reversal and LARS. This Community news blog will highlight the support shared in the forum and invites you to join in with the conversations if you have experience to share or questions to ask.

Some members come to the Community to speak to others who have been offered stoma reversal surgery. Although your healthcare team are the best people to advise on your individual circumstances, it can be really helpful to hear from people in similar circumstances.

“I have had my ileostomy since November 2018 following surgery to remove a tumour. I have been very lucky as I needed no further treatment and despite it being stage 4, I have had clear scans since then....My surgeon advised not reversing for 5 years, I think mainly because he fully expected the cancer to return (my oncologist was pretty sure it would) but when I saw him in November, he said he would do a reversal if I wanted to.  I now need to consider my options - my stoma is well managed and has just become a part of who I am.  I have read of a few cases of reversals not going well so I am a bit wary, but hoping to get more info here to make an informed decision as to which way to go.” - Community member, Stoma reversal and Low Anterior Resection Syndrome (LARS) forum.

Members of the group were able to offer support by sharing their own experience. Some members might not be on quite the same treatment path, but can identify with the issues faced and offer emotional support and questions to consider.

"I have an Ileostomy too but I’ve not had the same journey as you. Stage 4 is really frightening and now you’ve been offered  a reversal. It’s a lot to process and I think your in a good place to find lots of experiences from others that have had similar which will give you more information to make your decision. Mine was rectal and I’ve been told I’m a candidate for Lower Anterior Resection Syndrome. If your operation was higher up maybe a reversal will not have too many issues. Would a reversal inhibit your treatment if you needed it? I’m not sure it would but I’m not a medic. I have asked to be on the list, it’s a very long wait I’ve been offered lots of support and a colostomy if I an unable to manage. Good luck with your decision." Community member, Stoma reversal and Low Anterior Resection Syndrome (LARS) forum.

Other members may have more direct experience to share and it might be really helpful to hear positive reports of stoma reversal. Everyone is different so it can still be a difficult decision to make.

"I had an ileostomy reversal in 2018 and it was successful. I had stage 3  rectum cancer and following chemo/radiotherapy I had a low anterior resection where all of my rectum was removed I have been very lucky and don’t experience incontinence issues. A reversal is a very personal choice and only you can decide I personally am very happy with my decision." Community member, Stoma reversal and Low Anterior Resection Syndrome (LARS) forum.

"I would have stuck with the bag had my stoma behaved better - it kept prolapsing. In the end, my reversal was something of an emergency. There were times of regret in the early months, but now, 18 months on, I’m glad to be free of the stoma, even though some days can be tough" Community member, Stoma reversal and Low Anterior Resection Syndrome (LARS) forum.

Hearing a whole range of experiences from people who have been through a stoma reversal, in conjunction with advice from your healthcare team can be crucial in making the right decision for you.

"...had a stoma for 3 years whilst awaiting a reversal which I have just had on Wednesday 23/3/22...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 up to my 69th 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." - Community member, Stoma reversal and Low Anterior Resection Syndrome (LARS) forum.

In addition to sharing success stories, members discuss the challenges of stoma reversal. Whether you want to discuss your rectum, incontinence, constipation or diarrhoea, no subject is taboo.

"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." - Community member, Stoma reversal and Low Anterior Resection Syndrome (LARS) forum.

"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 thoughts!" - Community member, Stoma reversal and Low Anterior Resection Syndrome (LARS) forum.

We know that these shared experiences, both good and bad, can be crucial when making the decision to go ahead with a reversal, as this member told the Community. 

"Thanks so much for these great and helpful replies.  I knew that this was the right place to ask the question and your answers have made me feel far more confident that I'll reach a good decision."  - Community member, Stoma reversal and Low Anterior Resection Syndrome (LARS) forum.

Members are keen to highlight the importance of pelvic floor exercises when considering a stoma reversal. 

"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." - Community member, Stoma reversal and Low Anterior Resection Syndrome (LARS) forum.

Low anterior resection syndrome (LARS) is a collection of symptoms that people who have undergone a partial or total resection of the rectum might have. These symptoms include, for example, faecal incontinence or leakage, frequency or urgency of stools, loose stools or incomplete bowel movement.. This member describes their experience of LARS following a stoma reversal.

"I originally had a colostomy and then an ileostomy.  It was reversed after almost exactly 2 years, in March 2022.  I spoke with my consultant 6 weeks later and described my "issues". She said that I had LAR syndrome.  I Googled it and the symptoms I read of were identical to those I had, except that I have never soiled myself.  Trapped wind, frequent bowel movements, periods with no movements, permanent discomfort and loads of trips to the loo in the middle of the night.  Also, motions smaller and thinner than previously.  I was told that things would improve and, over the course of a few weeks, they did (and continue to do so)." - Community member, Stoma reversal and Low Anterior Resection Syndrome (LARS) forum.

If you're considering a stoma reversal, or living with LARS, there's lots of support available for you through the Community. Members will often share further resources they have found helpful, as demonstrated in this recent post from Community member Wellspring:

"It’s now around 18 months since my reversal and I’m amazed at the change. I’ve kept a diary/log for most of that time to help track the effectiveness of different regimes: medication, exercises, equipment, techniques and diet, as well as the effect of healing over time. I’ve recently found that there are new ways and ideas that can make a positive difference, even this long after the snip." 

Thank you for taking the time to document your experience Wellspring. If you'd be interested in finding the resources Wellspring has found helpful, please click here to read the rest of the post. Why not add your own questions, or hints and tips?

If you have your own questions, or can share your own experience of stoma reversal, or living with LARS, please do join in with the conversations in the Stoma reversal and Low Anterior Resection Syndrome (LARS) forum.

If you'd like to read Macmillan's cancer information about stomas, you can find this online here.

You can find additional information about stoma reversal from Colostomy UK here.

If you have any questions or feedback about this blog, you can comment below or email the Community team at community@macmillan.org.uk

Anonymous
  • Probably not enough footfall for 2 LARS groups?

  • Hi

    I think you're right and it would also split the forum and the support shared. By having one space where people experiencing LARS (with or without stoma reversal) can support one another, it means you're more likely to connect with people who understand. 

    I have added a link into the bowel cancer group which takes you directly to the LARS forum, which I hope will be helpful.

    We'll continue to gather any feedback about the forum and will continue to develop the space to make it as accessible to as many people as possible.