morning. I’m struggling with this at the moment and it’s limiting me to what I can do.
I’ve seen a surgeon recently who mentioned a stoma as a last resort but I’m not sure about it. I’m not suitable for a rectal stimulator.
I’m using pads and loperamide but wondered if anyone else has a similar problem?
oh yes i totally relate. For me what’s helped (but still a problem) is having very good pelvic floor muscle control. I was worried that this was causing problems with holding on to bladder too much but no apparently my pelvic floor function is pretty good. So I exercise it daily as taught be a physio and use a daily colonic irrigation system called Peristeen. I’ve had tests showing severe gastroparesis and severe slow transit - not sure if sjogrens or scleroderma are cause yet but likely a mix of the two.
I’m too immunesupressed to risk a stoma as just had a portacath line infection leading to 9 day hospital stay and removal of device. I wouldn’t feel safe having any further surgical interventions unless entirely necessary for my survival. The bowel overflow incontinence is very dominating and life altering and I always plan outings - even short walks- around it now to avoid humiliation. I have a disabled toilet key I bought online and this really helps as can google to check disabled toilets are nearby if I’m out. I’m travelling to London soon to see a scleroderma expert and already panicking and deciding best not to take my full laxative regime, just use my irrigation regularly and avoid eating anything remotely fibrous. Spare pants and biodegradable wipes and some tea tree oil are my backpack essentials. X
thanks for the reply. Tea tree oil….I’ve not tried that.
Hi, OldTed60. Your reply and that of Ffrwd are really timely: I've been procrastinating all day, putting off using my Aquaflush system! I have tried it several times and when it works it's great: usually no more humiliating accidents that day. However, if we go out for the day, I have taken to wearing Tena incontinence pants, just in case. I have lupus, a very slow transit bowel and Muscular dystrophy, so all the involved muscles are affected. Oh joy 🙁.
Colonic irrigation used daily after breakfast has liberated me as I can now go out and about for the remainder of the day with minimal problems and no leakage. I use the Peristeen system which my GP prescribes. Can be a bit time consuming having to spend approx 45 mins in the loo every day after breakfast but I have found it well worth it and really notice the difference any days I have to miss it.
Thanks for your reply. I’ve not heard of using irrigation before for faecal incontinence. Is the thinking the irrigation clears the bowel out fully? How long can you go out for ?
I’m not an expert, but my understanding is that the internal sphincter in the rectum fails in scleroderma . A healthy sphincter holds the faecal matter until there is sufficient to need to empty the bowel normally. When the sphincter is not working the result is that there is a constant production of faeces, with no ‘gatekeeper’ and it often leaks out. Once I have used the irrigation it effectively clears things out enough so that I can go for 12 to 24 hours with no requirement to pass a motion. As well as some leakage I also found that I had difficulty passing a motion completely because of reduced muscle function in the colon. This often meant the job would be half done, I’d clean up, some more would come and I could be stuck on the loo for 15 to 20 mins 4 or 5 times a day. The skin got very sore from all the cleaning. The irrigation has stopped all of this and I can now just go to the loo for a pee during the day without my bowels moving! I usually have one normal movement after breakfast, use the irrigation and the rest of the day is fine. It has made a huge difference. I appreciate that there are different degrees of severity of the involvement and it may not work for everyone but it would certainly be worth asking about it and see if your consultant thinks it might help you. Good luck
This is so helpful for me. I use Peristeen daily too but due to time it takes up (I have rectocele and cystocele so takes an extra time - about one hour or more to work) I use in evening so can have a shower or bath after. I asked my GP just now about getting ileostomy. The colorectal nurse said this morning that I should just stop my laxative regime and eat more fibre if I have to go out or when I’m getting Iloprost with only a shared toilet. I said to GP I felt this was bad advice for me as also have Gastroparesis and SIBO. He agreed but advised that I would need to think hard with my gastro about ileostomy what with having had portacath infection last month. He pointed out that the portacath site had become very infected on my chest - which is fresh skin unlike a lime into the bowel - and reminded me that I’m on max Mycophenolate. I don’t need reminding but it was good to get a reality check nonetheless. But Peristeen only works for me if I’ve used laxative earlier so getting the right amount at right time is key!
However reading your helpful comments had made me think I need to try and use it mornings sometimes rather than evenings to avoid the dreaded incontinence. Problem is that my restricted liquid diet means I need some sodium picolax daily to get me moving and if I take at night I wake up in pain or in a mess or both! No winning with upper gut v lower gut involvement it seems!
thankyou for your very helpful reply. This certainly gives me hope and I will discuss with my consultant . Thanks again
I have limited systemic sclerosis with mild faecal incontinence , SIBO (currently gone thanks to rifaximin😊) and my bowel is a bit sluggish.
My gastro recommended I try physillium husk which just firms things up a bit more and I have found that taking 2 capsules a day really does help. The instructions say take 6.
I would add you should not try this without taking medical advice first and it must always be taken with plenty of water. It should NOT be taken by anyone who suffers with constipation.
Raynauds and scleroderma 
Scleroderma Sufferer. 
Possible Scleroderma 
Scleroderma and fibromyalgia 
