Post treatment bowel incontinence

Hi Nikki65

I think you hit the nail on the head  - the leakage was trying to navigate around the  blockage, I feel so.much better today   tho its been a messy 24 hours or so and of course skin has flared up due to that but manageable. 

With regards to returning to work  were you able to go back to work (& focus) before having scan results to confirm that treatment was successful? I've just been thinking over the last week as treatment has finished  I'm not sure I will have the strength to go back before I  know whether it has been successful or not.

I hope that's not too intrusive to ask. I have a good sickness policy with work so financially I don't feel under any pressure to return before I'm ready and I know it's early days but I don't think I could focus with the worry of has it worked or not hanging over me.

Andrea

Nikki65 I've just read your 'bio' and see your diagnosis/treatment plan was different from mine. Am I right that you had tumour removed then the chemoradiotherapy to ensure everything was clear? I have a larger tumour and its also in lymph nodes so my consultant said that I will be scanned in approx 3 months time. When I asked what would be next step if this wasn't successful (he advised 60-70% chance it will work) He just said we aren't going there yet we are hopeful this treatment will work. I guess that's playing on my mind as to how I think I'd struggle to go back to work before I know outcome of this treatment.

Hi again Andrea (Andi72 ),

Of course it’s not too intrusive at all. Regarding returning to work I would never want anyone to judge their recovery by anyone else's, although there’s some common threads regarding side effects etc., everyone’s an individual, my diagnosis was an early one T1N0M0 I also had my tumour removed via local resection prior to embarking on the chemoradiotherapy due to a small area only having a 1mm clear margin therefore this was classed as mop-up treatment for me & there was no actual tumour to treat it was solely to zap any stray cells.

I didn’t suffer the severe bowel disturbances that many do throughout/after treatment & once my side affects had peaked around 11 days after my last session my skin healed quite quickly & once I’d been to the loo soon after getting up in the morning I was pretty much set for the day. I still had all of the concerns that everyone has following my diagnosis & treatment but right from the start of it all I functioned better when my mind was occupied therefore even on a phased return my time was occupied for a few hours a couple of days a week.

My advice would be to just do you, don’t go back to work until you feel the time is right for you to do so. 

Nicola 

1. Hello, I am joining this forum on behalf of my mother who finished her treatment in early 2021. We are about 4 years out and she is still dealing with severe and consistent bowel incontinence. She’s doing all the recommendations, small meals, bland diet but hasn’t found any relief from it. Doctors are dismissive and not offering enough support or treatment for her symptoms. We are unsure if this will ever go away. For reference she is 71 years old, retired, doesn’t drink alcohol or smoke and lives a healthy lifestyle otherwise. Is there anyone in the same situation with any advise? 

Saaraah,

Hi, I am sorry to hear about your Mum - that seem like a long time to still have severe incontinence. She probably ought to pick this up, either with her GP, or by talking to the oncologist who treated her next time she has a check up.

It might also be helpful if you start a new thread, it will attract more replies and you will get some really good advice and support; this one you have joined is quite old. 

All the best 

Hi Saaraah, I am sorry to hear about your mums struggles. I am nearing 70 and over 3 and a half years post treatment and do have days depending on what I’ve eaten multiple bowel movements but with a careful diet can usually have two in the morning now and usually done and luckily I have never been in a situation where I have actually been incontinent but would hate to be in a situation where I have loose stools and out and about. As your mum has tried everything and still nothing has changed she needs to go back to her doctor and insist on seeing the bowel clinic. Get in touch with the incontinence society for advice on what to do. It might mean a permanent stoma but I know people whose lives have been changed for the better due to this surgery. Treatment can damage sphincter muscles and I spoke to my oncologist about how we suffer lifelong side effects and read that we have two types of sphincter muscles that are internal and external and I think the external muscles you can strengthen with pelvic floor but once the internal muscles are damaged they are done. My advice is for her to go back to her gp and say it’s having a big impact on her physical and mental health.

good luck!

Julie

Hi Saaraah ,

I’m so sorry that your dear mum is still having bowel issues. It seems this far down the line that unless she has some kind of intervention this will be her new ‘normal’ when this situation is anything but normal!

I would suggest in the first instance speaking with her colorectal consultant who will be doing her surveillance appointments still I presume? If this issue is placing limitations on her day to day life then suggestions may include going down the route of an elective stoma, I understand that this is a big decision to make but it can hand people back their quality of life. She could also ask to be referred to your local bladder & bowel service, I wasn’t aware this service even existed until a couple of years ago when a nurse at my GP practice mentioned it in passing, your mum would probably get a quicker referral onto other services through them. 

As Irene has already suggested if you pop your post up as a new post many more people will see it & may attract further replies.

Let us know how your mum gets on.

Nicola

Hello Saaraah

I am really sorry to hear your Mum is still dealing with such severe bowel problems.  Unfortunately some of us are really adversely affected by the radiotherapy and the doctors being dismissive beggars belief really when her life is so adversely affected.

I was left with severe stenosis of the back passage after the radiotherapy so had to resort to taking Laxido (a stool softener) every day in order to be able to pass stools.  It worked, but my life was then ruled by waiting until I was really 'empty' before I went out.  Just over a year ago I had my anus stretched under GA (sounds awful but it wasn't) but the change was temporary and I would have had to carry on stretching for the rest of my life.

I saw the colorectal consultant later and he was such a kind gracious man.  He suggested I consider a stoma, didn't put any pressure on me and told me to go away and think about it.  By the time I got home I had decided to go ahead.  I had the stoma formation last June, and apart from a couple of hiccups early on I have never looked back - I feel really safe and have taken it in my stride.

I am telling you all this as it may be something your Mum might consider if all other options fail.  It has honestly been liberating in that I can go out now and don't have to plan around available loos!  I can also eat and drink what I want without any repercussion.

Happy to give more information, and there is a forum  community.macmillan.org.uk/.../ileostomy-and-colostomy-discussions-forum where members were very helpful too.

Irene xx

Hi Saarah, I'm now 14 years out and I'm afraid I still have the same. Diet makes no difference to me and so  I have controlled it for years with Immodium which I must admit has enabled me to live a normal life. I generally take 1 a day, after my first 2 bowel movements, depending how soft they are. That will give me relief either until the evening or until the next day. Sometimes I can miss a day, sometimes I only take half, sometimes I have to take 2. I was told there was no long term side effects to taking immodium and so it has seemed. I don't know if you know about radiation proctitis but if you don't you might want to google it. My oncology team knew about my bowel issues but no one ever mentioned proctitis to me, although I believe that's what I have and there can be long term effects so its good to be aware of it.Good luck to your mum.