Post treatment bowel incontinence

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Hi all I finished my treatment last Friday,  yay! But wanted to check with others how things were with them following treatment. 

I had been coping OK with the broken, sore skin etc when that first started maybe week 4ish throught treatment.

At beginning of my last week of treatment I found I was having a number of 'accidents' every day without warning. This has gotten progressively worse every day. I am able to cope with the skin/creaming regime but over last few days I have spent the majority of time on loo/in bathroom and skin around my anus has become very sore & bleeding lots. My snr radiologist had told me on Thursday to take a Loperamide before coming to hospital to hopefully prevent an accident when out of house, this didn't work. I took another few on Fri & Sat but they didn't seem to be doing much and as I was on stronger co codomol I didn't want to risk becoming constipated so stopped them. Since then I have been having maybe 10-15 episodes/accidents daily but I still feel like I'm blocked and this loose 'diarrhoea' is making its way around some compacted stool then making the messes on my. The pain has been excruciating. There were very very small amounts of poo every now and again (as opposed to the diarrhoea) and they are extremely dried up but I can't seem to strain to get it out nor get away from this constant urgency to go to bathroom as need to empty myself yet I'm having these messes numerous times per day. I hope this makes sense and has this happened to anyone else?

I only got my morphine pain relief late yesterday so have only started that last night and am aware that can cause constipation too. I just don't know what to do. I was expecting the 10-14 days after treatment where I was told things would get progressively worse that it was the effects on the skin etc that I had been dealing with throughout last few weeks and that that would get more severe  getting rather than what I'm dealing with. Anyone else had similar situation? 

Apologies for moan and hope that makes sense to someone else out there. 

Andres

  • Hello Andres, sorry to hear about your troubles with the famous toileting issues which is very common early post treatment. I recall around 10-15 visits to the toilet each day and feared leaving the house especially when my up and coming visits to my oncologist would be due. For the pain going I would use the sitz bath and afterwards the bidet spray to help keep everything clean but it was very time consuming. You are very early days and you are still going to be very inflamed inside and around the radiotherapy area so it’s not surprising every thing is upside down. Around 10 weeks post treatment they told me to go on the FODMAP diet and that for me changed everything up to a point. I cut out coffee which is said to irritate the bowels but do ration myself to up to three cups of decaf a day. I am lactose intolerant now so had to change to lacto free milk. The FODMAP diet is quite intense and I had to cut out a lot of foods I considered healthy like whole meal bread. My gut just couldn’t cope with it. Lots on the internet about FODMAP foods. Eat a very simple diet and definitely no onions! You can find lots of substitutes but it’s not for ever. If you are going to take morphine or co codamol then you should take a stool softener and not a laxative as they stimulate the gut to move on where as a stool softener does just that. As you are quite early days yet you are going to have to see what foods cause too regular poos. I found I couldn’t eat many fruits especially citrus fruits and apples with skin. Chocolate was another no no for me. Also when things started to settle and I ventured out I would sometimes feel I had still some left to come out all the time and this is called tenemus. I would wear period knickers for that added protection just in case. Our gut also needs something it can bind food and I made oat bread. On here people swear by Seasalt soaks and I eventually just put Vaseline on my sore skin or sudocrem as they were the least irritating for me even though my bathroom cabinet was being filled with magic potions that didn’t work for ME! You will eventually start to manage your symptoms and know your body. Take care. Just to add, never apologise for moaning as we have all been there and done that.

  • Hi  ,

    Great to hear you’re through the other side of your treatment although not so great that you’re experiencing the dreaded bowel disturbances that unfortunately often go hand in hand with this treatment.

    I class myself as one of the lucky ones I didn’t suffer from diarrhoea thankfully but swung the complete opposite way with chronic constipation so couldn’t take any of the opiate based painkillers & took stool softeners for almost 3 years! I would get serious urgency as soon as I was up on my feet first thing in the morning & would have to dart to the loo quick sharp!

    As   has said it’s very early days yet although I understand that doesn’t help you right now. Keeping a food diary is something many of us have done in the early days just to help identify foods that cause a reaction, I can no longer drink coffee, even decaf, & I have to be wary around a few foods that didn’t cause me issues prior to this treatment, I tend to now suffer something similar to IBS symptoms if I eat/drink the foodstuffs I’ve identified. 

    I remember when preparing to start my treatment being told in clinic if I suffered diarrhoea to eat a ‘white’ diet, white potatoes, pasta, rice, chicken, white fish etc., not particularly great for nutritional value but if it helps calm things down a little, it’ll not be forever, I was pre-prescribed loperamide also. 

    The predicament you’re in at the moment doesn’t sound much fun at all, I really hope things start to improve really soon. 

    Nicola 

  • Thank you fior replying. I guess I wasn't expecting the incontinence to start and be so severe so suddenly (I had a few accidents at very start of treatment and foolishly thought that might be the end of that particular symptom lol) 

    I have been try to stay on low residual diet for most of the treatment.  Like you say the lack of fresh fruit & veg makes me feel I'm.not looking after my body correctly 

    I called hospital today and senior radiologist suggested I try Ducolax (Bisacodyl) to see if I could 'shift' the hardened poop,  it does seem to have helped Fingers crossed

    Can I ask would you suggest Laxido  or the like a Duckox stool softener tablet going forward? Did you find anything in particular helped?

    You seem to have managed a very long  difficult journey- well done you!

    Andrea

  • Thank you for replying,  hearing others have had to deal with the constant toileting/cleaning etc & accompanying issues re what happens when I leave the house is a relief tho obviously I wish none of us had to go through this. 

    I'm hoping after taking Ducolax ( Bisacodyl) as per hospital today I  THINK at the moment that it has cleared my stuck poop so now I'll just have to try and work out how to manage the incontinence bit tho perhaps with the morphine that will swing the other way instead. Would you say Laxido or a stool softener tablet would be best?

    I asked at hospital about using Sudocrem or Metanium as I remember they were both good when my children were little babies and suffered badly with nappy rash but I was told not to use either- perhaps now treatment is over either might be an option at this stage or maybe I should leave that for a few months?

    I really hadn't considered that I may have to make long term adjustments to diet- so many things ahead still never mind the waiting to see if the treatment has been successful or not!

    Thank you

    Andrea

  • Andres

    We all vividly remember how we felt at the end of treatment, the awful pain on going to the loo and the constant upset and diarrhoea, and I really feel for you.  I am not sure if it was the radiotherapy or the chemo that caused the diarrhoea, but it did ease off after the end of treatment.  Please just make sure that you take stool softeners alongside the morphine.  I find Laxido the best, and I have tried a few.  I always emphasise a stool softener rather than a laxative, when your bowels are totally out of sorts anyway sometimes a laxative is too severe.  It is very early days, and you have done so well, isn't it a relief not to have the daily visits?  Just be very kind to yourself and call on any help you can, your body is taking every ounce of energy repairing itself after what is a very taxing treatment.

    You have already had some really good advice, we are all thinking about you going through this really rough time and I promise you things will get better.

    Irene xx

  • Thank you Irene. I feel so much better now that  I sud 24 hours ago so hoping it was just a wee 'clearout' that I needed to get me back on track for the normal discomforts Laughing  I'll keep up with the Laxidoi then from  tonight. 

    Andrea

  • Hi Andres,

    Never apologize for moaning here- this is the best place to do it!

    I'm so sorry abou tthe incontinence/runs and the pain. It's just a trifecta of awful. I only had a couple of episodes of incontinence but wore disposable knickers for a few weeks to make sure. Interestingly, it's been over the last several months that I've had a couple of out-of-the-blue episodes that caught me right out. When I encountered loose stools (oh so painful, almost as bad as constipation!) I had success with Immodium, but during the oxycodone weeks I had to be super careful not to get bound up. 

    Worst see saw ever.

    I'm glad to read down and see that it's starting to be not quite so bad. This is a good trend. Hang in there. 

    Hugs

    Suz

  • Hi Andrea, glad you have managed to clear some of the problem. I would say sudecrem is fine now you have finished radiotherapy if it doesn’t irritate. My specialist nurse recommended good old Vaseline but your nurses could also give you some advice if you are really sore. Stool softeners over laxatives and when I was on morphine regularly I took movicol every night to keep everything soft. 

  • Hi again  , that’s good news that you’ve had some relief following the advice given by your team, these are the people that will have come across the issue before I’m sure, I’m wondering if the incontinence/leakage you’ve been suffering has just been backed up & is working it’s way around the blockage & that’s why there’s no control. Hopefully once you’re clear of said blockage you’ll find that juggling loperamide (if you’re still having some diarrhoea) & stool softeners while you’re healing & taking opiate based pain relief will be much easier to manage & both medications will work properly. My recovery was pretty straightforward compared to some to be honest, I was back on a phased return to work 5-6 weeks after treatment had finished & haven’t had many hiccups along the way. I took Movicol to begin with which changed to Laxido (same difference I think) to combat the constipation although I do wonder if it was true constipation after I’d stopped the opiate pain relief or if it was internal inflammation from the radiotherapy that was just making it difficult to pass anything of normal firmness! I did suffer anal stenosis hence taking the stool softeners for so long but that’s definitely improved as time has gone on & I don’t require anything at all now, my bowel habits are completely normal now. Once you’re passed this next week or so hopefully you’ll start noticing a big change in the way you’re feeling & the way your body is beginning to recover from this ordeal. Keep us updated on how you’re doing. 

    Nicola 

  • Nurses have just recommended yellow paraffin and I have also been using Aloe Vera gel on my wider groin area as it's cooling and that area isn't as effected at the moment.  I might give Sudocrem a go Thanks Blush