Decembeard

Life with bowel cancer

3westies

LARS symptoms

I had lower anterior resection in 2013 and I am now 5 years cancer free! However, I have terrible toilet issues which I have mentioned for the last 4 years or so to my surgeon and his team and the oncologist. I had oral chemotherapy and radiotherapy prior to surgery. I was told to eat jelly babies and that things would improve
Can’t handle the unpredictability of it all and wonder if anybody has had the same problems and if like me are considering to have a stoma bag put back?

abergirl

Hello @3westies may I ask what your symptoms are? 4 years is a long time to have put up with that. I do hope you get some help. Many folk on here recommend a second opinion....is that an idea for you? :x:

Flo

Hello 3 westies so sorry to hear about your on going problems .
I had bowel cancer in 2008 with a recurrence in 2010 & hopefully still cancer free.
I had lower anterior resection & partial hemicolectomy iñ 2010. Also stoma reversal, I like you still have on going bowel problems. Diet & Loperamide gave not helped.
Initially was told to go away & get on with it, I gave up work as I worked in a lab & could not cope with the number of accidents I was having. Diagnosed with LARs 2017.
Has anyone suggested a referral to the Bio Feedback team they have some useful ideas .
However things still not good so I have an appointment on 19th Nov to discuss Subsensory Neuromodulation for incontinence ( details can be found on line) or alternatively another stoma.
I do hope you can find away forward I sympathise with your on going condition. Take care :x:

GROBER

I am genuinely surprised that more people suffering from LARS are not given the chance to try Anal Irrigation. Basically you periodically flush out the contents of what remains of the large bowel with warm water. This can be of great assistance in controlling incontinence as once "emptied" there is nothing to pass - at least for a decent period of time. Some people find the whole idea distastefull but believe me its infinitely preferable to uncontrollable / unpredictable incontinence . Its often prescribed to women who experience incontinence after pelvic floor damage after a difficult childbirth but is gradually achieving greater recognition in the bowel cancer community as user experience is gained. Try contacting your colorectal team nurses and if they can't help try further afield. Its definitely worth a go, its helped me a lot. Try searching for Qufora IrriSedo or Peristeen anal irrigation system

bogongbelle

Hi @3westies! I feel your pain ( although, in this case, maybe it should be that I feel your diarrhoea!). I’m in exactly the same situation as you, except I’m only 18months post ileostomy reversal. I’ve seen my surgeon during the past week to look at a permanent stoma and will probably go ahead with it once I finish chemo in early December. I fully believe that quality of life is so important, especially when the length of life is deemed to be shortened. I’m tired of the side effects of this disease defining my life! If you want a bag, go for it!😊

Terrish

Hi @3westies - I agree with @GROBER - although I don't have any issues now, in the first few months I couldn't bear the unpredictability so I would use an irrigation system to flush everything out then I could enjoy up to two days of not worrying. I found a change in diet helped me the most - I have IBS so gluten low (can't quite manage free!) and lots of eggs.

3westies

Hi thanks for the response. I have a very narrow rectum with the result that no stool too large will pass without a lot of pain and sometimes bleeding. I have been given fibrogel and movicol but they didn’t help so I have been on senna for about three years. I still struggle but I go through being constipated to dihorea to incontinent all in one day and go to bed very sore and tired. I also have the feeling most of the time that my bowel isn’t emptied. Sometimes also uncomfortable sitting after fragmented stools. Also between 5 and ten trips to the loo a day. Lots of unpleasant wind that is uncontrollable at times. Worse after meals 😅

3westies
Quote from @bogongbelle:
Hi @3westies! I feel your pain ( although, in this case, maybe it should be that I feel your diarrhoea!). I’m in exactly the same situation as you, except I’m only 18months post ileostomy reversal. I’ve seen my surgeon during the past week to look at a permanent stoma and will probably go ahead with it once I finish chemo in early December. I fully believe that quality of life is so important, especially when the length of life is deemed to be shortened. I’m tired of the side effects of this disease defining my life! If you want a bag, go for it!😊

Thanks 😁I felt like I’d had enough twelve months ago then tried taking the senna at different times but the results are always the same and I still think that the bag would be more ........pleasant

3westies

Hi I have never been diagnosed with LARS. Nobody has ever felt that the symptoms are bad enough to do more investigations
Just keep being told it will take time eat more fibre,

3westies

Thanks I am great full for the response. I don’t feel so alone.i don’t think there is enough aftercare for patients re: mentally and physically.

Quote from @Flo:
Hello 3 westies so sorry to hear about your on going problems .
I had bowel cancer in 2008 with a recurrence in 2010 & hopefully still cancer free.
I had lower anterior resection & partial hemicolectomy iñ 2010. Also stoma reversal, I like you still have on going bowel problems. Diet & Loperamide gave not helped.
Initially was told to go away & get on with it, I gave up work as I worked in a lab & could not cope with the number of accidents I was having. Diagnosed with LARs 2017.
Has anyone suggested a referral to the Bio Feedback team they have some useful ideas .
However things still not good so I have an appointment on 19th Nov to discuss Subsensory Neuromodulation for incontinence ( details can be found on line) or alternatively another stoma.
I do hope you can find away forward I sympathise with your on going condition. Take care
Quote from @Flo:
Hello 3 westies so sorry to hear about your on going problems .
I had bowel cancer in 2008 with a recurrence in 2010 & hopefully still cancer free.
I had lower anterior resection & partial hemicolectomy iñ 2010. Also stoma reversal, I like you still have on going bowel problems. Diet & Loperamide gave not helped.
Initially was told to go away & get on with it, I gave up work as I worked in a lab & could not cope with the number of accidents I was having. Diagnosed with LARs 2017.
Has anyone suggested a referral to the Bio Feedback team they have some useful ideas .
However things still not good so I have an appointment on 19th Nov to discuss Subsensory Neuromodulation for incontinence ( details can be found on line) or alternatively another stoma.
I do hope you can find away forward I sympathise with your on going condition. Take care

Flo

Hi 3westies I really feel for you, have you gone back to Colorectal team to ask for more investigations?
I agree there is a lack of support at lots of levels.
I used to think the cancer has been treated I should just learn to get on with the outcome but after both my sister's died from colon cancer in 2015 I realised what an impact my lack of bowel control was having on not only me but the rest of my family.
I am lucky to have a very supportive GP who encouraged me to push for further investigations.
I have tried anal irrigation which can help some days but still get caught short on numerous occasions.
If I come across anything else that may help I will get back to you. Look after yourself :x::x:

3westies

Hello abergirl
I have a lot of pain when I go to the loo because my bowel is very narrow at the end. Then when I’ve been about 4/5 times the stools become loser. Then sometimes by the end of it all I don’t make it to the toilet in time😩 I also have the feeling most of the time that my bowel isn’t empty.
I have been to my GP now who in turn has now referred me back to my surgeon whom I shall see in January 2019
Thanks how is your husband doing?