i have limited scleraderma ,sjogrens ,hypothyroidism and raynauds.
I am having feacol incontinence been to hospital keep sending me to bio feed back clinic. Does not help me very embarrassing. Anyone else suffering with this.
faecal incontinence: i have limited... - Scleroderma & Ray...
faecal incontinence
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janome4800
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Oh, yes. Very embarrassing. I keep balancing my senna and ducosate. To protect myself I wear pantyliners and toilet paper.
Yes just like Zenabb. Made worse at the moment as I am anaemic and have had to increase my iron tabs to 4 a day. I go to the toilet usually about 6 times in the morning, with leakage after each time. Usually settles by afternoon. If I need to go out I usually take Loperamide which stops the toilet trips almost immediately. I also have a lot of smelly wind, but I think this has been made worse by the iron tabs. Just part of the many problems scleroderma throws at you. Sorry I am not a lot of help, but a least you know it is not just you.
Omg thankyou for bringing this up because I go through the same problem. If I have a bowel motion I can guarantee I will have leakage afterwards. It's as though my body is telling me I have emptied myself properly it's so embarrassing. I take Loperamide but that doesn't work and as the person said before it usually calms by the afternoon. But it makes it so difficult to go out because you know if you've had a bowel motion your most definitely going to leak if you go out. But I know The Royal Free are sending some patients to see a Dr at a clinic in Euston who has a nerve stimulation technique that is supposed to stop the problem. It's all about stimulating a nerve in the legs and they have had a lot of successful patients treated by this particular dr. Sorry I'm afraid I don't know the drs name. But I'm hoping to get a referral the next time I have my appointment at The Royal because I can't stand how much this problem is ruling my way of life.
• in reply toCole57
Vegas nerve stimulation acupuncture in the ankle with an electrical impulse that makes the nerve work better.
Had it for my bladder
You could ask for something like the Coloplast peristeen or the Braun version which could be better it's an enema system which gives you a measured amount of water so cleans lower end of bowel.
Ive one as i get very constipated easily over nerve damage and Fibro!
Only thing i find can be while later get a leak from mucus from bowel but ive found a tampon works great just make sure get in far enough so comfortable get no leaks now after a while remove.
Coloplast also make a plug to stop bowel leakage you can get via Quacks or Inco service/hospital
coloplast.co.uk/Peristeen-A...
Cole57• in reply to
Thankyou for that advice I had read about home systems that you could get to completely empty the bowel. I will mention it to my Rheumatologist.
• in reply toCole57
you can also get a kit/probe that you can attach to shower just unscrew shower head then screw that on just makes sure water low as possible ie not whanged up high plus cool temprature ie 30 degs is
have one my self can sit on toilet/Porcelean buddah so empties into pan
Cole57• in reply to
It's interesting to see how many people have this problem but are too embarrassed to mention it. For so long I wanted to start a topic on the subject but thought it would be too much. But I knew from speaking to my Rheumatologist that it was more common than people think. I suppose it's the stigma of talking about such a taboo subject which is a part of this disease. But I think more needs to be said about it and people need to know that there is help available for it. I know I'm now going to get my problem under control instead of it controlling me. Thankyou for the list of items to be researching.
• in reply toCole57
With Fibro/Raynauds you get both ends issues!
Get terrible have to go now as it's like someone is squeezing the hell out of your bladder as braid sees as pain when bladder sends signal to control as it fills.
They give you pills/meds which don't really work well do for them as a cash cow!
i also have it not emptying fully from time to time as also have spine damage lack feel in lower regions and back of legs which they said could cause bowel issues!
Tried AFEX system which didnt work told them i can pee my own pants without help from you! as it couldn't cope with flow as we just go not dribble.
Got my self some washable wear for nights etc and daytimes as when cold makes it bad and disposables apart from drawing on skin all the time so irritate&chems don't work if a front/side sleeper
There are people/places that make them for you to order so get what you need.
Plus getting up in night when sleeping bad in first place is a bugbear! so for me wear then worry about washing next day simple atleast then you get some sleep and feel comfortable without worry of mess etc.
Used indwelling catheters which found great as had total control had a real issue with hospital though as they want you to do what they want yawn going round n round in circles so bought my own to try in the end Quack prescribed them for me as i worked out what bits was best and drill so didn't get infections still have some i can use if having a bad issue or somewhere unknown for toilet etc!
As one of the problems i have is if i need to pee and keep holding it in the end i will empty my whole stomach if gets too bad had it before as had to hold for ages as no where to go then rest of day was in toilet every ten mins and food id had hours before came out as went in!.
So as i said we have to find what works best for US not for them as we have to have total confidence in what we are using esp with me as have Asperger's and it will play on my mind till get agitated.
But don't worry about what others think (many have own issues anyway)as to me it's just a tool to get along/live by just like glasses/contacts/crutches/walking stick/frame/hearing aids and a whole host of things because as we age we collect this stuff just like luggage!
And Bladder/Bowel leakage is far more common that you think can happen to anyone! as it is the end of the line so anything upstream/line of it effects them.
• in reply toCole57
you have to have something that settles the mind as ive had things for my bladder that havent worked so often don't feel confident going out other wise.
but trouble is many medico Quacks only think whats best for them not us! and we don't get to go home at 5pm or have days off.holidays etc etc
Cole57• in reply to
I totally agree and it makes life so much harder. Your right we have to do what's best for us and what helps us to lead as much a normal life as possible. For months it's been a case of going out in the afternoon because I know things settle down by then. But I shouldn't have to live my life afraid to go out because something will happen. I've missed going out with my kids or family because I frightened of leaking.
If I feel like this and it's just the back it must be horrible for you. I really hope that you find or have found the right solution to help you live day to day. I think all of us with these problems just want the same, to be able to live some kind of normal to us.
Monika• in reply to
I have been using the Coloplast Peristeen since February and it has totally transformed my life. I have just been to Thailand and used it every day. This is something that would have been an enormous stress in the past because of the incontinence . I do hope you find something to help you. Sending lots of love and healing thoughts x
• in reply toMonika
I have a couple of issues with the peristeen did speak to about them but they stone wall my questions!
Monika• in reply to
Sorry to hear that as I found them very helpful x
• in reply toMonika
It's ok but finding pumping after a while hard as repetitive action so hands stop working!
I did suggest a bracket to click pump into so can hang up to dry/drain so not falling around on the floor as pipes still so ends up going where it wants not mine!
I have had surgery and now have a stoma. It is my second week and I feel like this is what I needed to do!
Please tell us what a stoma is
• in reply toMylreaclairelee
A stoma is where they operate on your bowel via opening in skin of belly then attach to a port that stays attached to your side which is connected to a removable bag which you change when need to so you no longer need/use your lower bowel/anus sometimes done if have an operation on lower bowel to allow to heal or if have had a trauma like pelvis crush or it's been perforated like knife/gunshot/falling on something plus if have cases of colitis etc
Am 63 with infant onset immune dysfunction + connective tissue disorder inc raynauds, systemic lupus etc. Gastroenterology describe my version of this as moving from lifelong slow transit dysmotility intestinal insufficiency into intestinal failure...all due to my underlying comorbidities .
For almost a year my colorectal chief has me with less messes thanks to my lupus meds + immunology's daily antibiotics + an ultra low fibre diet + daily methylcellulose (Celevac). But i do like to be near a loo at all times...and i often wear panty pads. Gastroenterology nutrition & dietetics see me regularly and have been especially supportive. My gastroenterologist also sees me regularly. The only biofeedback-like experience i've had was assessment by nhs womens health services physio who gave me defecation dynamics training...embarrassing but EXTREMELY helpful
Wishing you all the best
🍀🍀🍀🍀 coco
• in reply toEOLHPC
But why should we be embarrased in the end as no one gets it from wearing Glasses/False teeth/Hearing aids/Crutches/and a whole host of things?
As all just tools to live/get by in life and no one is perfect can happen to anyone as i tell them.
All it takes is an accident etc and there in the same or worse boat than us!
That soon focuses there minds!!!!
EOLHPC• in reply to
Good Point! 👏👏👏👏
Yes me too. Always worrying where the nearest loo is. Tend to keep my outings to afternoons. Always had slow motility until a few years back now it's the opposite and out of control. Bought panty pads but not tried them yet. Doctors aren't really listening but am now attending the Royal Free so hope to get some help with that. Great to know we don't suffer alone.
Hello manometer,
I too have Limited SS. Sjogrens. Reynauds.Osteoarthritis and Fibromyalgia. I am really beginning to have trouble with leakage and mucus after bowel movement. Biwels never feeling empty. Embarrassing and really uncomfortable most of the time. I feel really low at the moment. Hurt so much everywhere at the moment. I never have time off work, but had two days this week. I just couldn't face it. It is just reassuring know we have friends out there going through the same. The others replies are helpful as well. I will mention to my rheumatologist when I next see her.
Onwards and upwards everyone. Take care
I also have Raynauds, Systemic Scleroderma with fecal incontinence, always have to wear a pad. 
I have this issue which for me started about 10 years ago due to SSc & childbirth.. I had lots of tests like others but was sent for bio feedback & it turned out I have nerve issues. I was fitted with neural stimulator which has helped but still get some leakage due to my own physiology.
Yes I have the same only my problem is chronic constipation - either neurogenic or Sjögren's dryness. The Scleroderma doctor I'm under has referred me to gastroenterology for assessment but meanwhile I learned from hard experience to keep to low Fodmap diet and a GP took me off Lactulose and Fybogel and back onto Laxido with Senna syrup or Biscodyl. This works but the price is high. I don't leak as much as slowly ooze (sorry!!) continuously on this mix. If I take Biscodyl at night then I wake in the early hours with bad tummy pain and am glued to the toilet until early afternoon.
I now have to carry a kit including spare pants and wet wipes with me all the time if I go out. It's very humiliating and I find it so hard to speak about to anyone at all - including doctors.
Cole57• in reply to
I’m sorry to hear your experiencing the same issue of feeling embarrassed about what your going through. It’s so hard to talk about with anyone. I felt so ashamed when I had to explain to my older children about what I was going through. I only told them because I needed them to know why there might be times I would have to let them down. Even when I told my sister who I’m extremely close to it was hard to tell her. She was more upset that I had been hiding it and going through it alone. This forum has been such a strength it just knowing that we are not alone and that we are amongst friends who are going through the same. It’s good to talk to people who really understand what I’m going through.
• in reply toCole57
Yes I couldn't agree more. I'm a very confident and common sense patient most of the time but this topic is very hard to broach for me too. My late mum actually had very similar problems and ended up having major abdominal surgery so I grew up with it as quite an open topic within the immediate family - she was a tad obsessed! But somehow this has made it even more of a taboo for me which is weird really. I had a very bad experience with a horrid GP early last year when it became a big problem for me and this really hasn't helped. But hey it's great having a place to turn to as you say. I am on 3g Mycophenolate.
• in reply toCole57
I think that B complex vitamins aid digestion. I take Shaklee B complex. You can become a Shaklee member at no cost and you will get a discount. If you do not want to join Shaklee, you could go to a Vitamin Shoppe and buy B complex. I do not recommend iron pills because they cause vowel issues. Try a healthy, gluten free, organic diet. Read the ingredient labels on all food product packages. Over time your digestive upsets should settle down. Keep a list of what you eat and how your digestive system reacts. Niacin supplements help Raynaud's Syndrome. Niacin also helps you sleep better too. Wishing you improved health and continued emotional support. It is not easy coping with all this. This message applies to all who are struggling with Raynaud's, arthritis, etc.
Yes. It is horrible, mention it at EVERY consultation
I have ever had. Nothing, nothing, nothing gets done
Cameras show 'nothing wrong' but then it is just left.
Ignored, forgotten, Swept under the carpet. As does the
horrible condition of not being able to make love with my
partner of 37 years. For about the last 12 years. Horrible.
I now go to a Healthy Bowel Clinic at Aintree Hospital and have been prescribed Loperamide oral solution and also an irrigation pump. This helps with the seepage as it clears the backlog. The only problem is that using the pump with my hands makes them hurt more and it puts a strain on my back because of the position I have to adopt. I am also on codeine painkiller but even then it doesn't really stop the soft stools. Like everyone else I have put up with this for many years with no one really knowing what was causing it. I have had all the tests under the sun for cancer and so forth but all the medicos could come up with was a weak inner sphincter and IBS. Only problem being didn't have the intense griping pains that goes with IBS.
• in reply toPaleIndian2
Hi i have no feelings around lower back/back side so it's no tight unless tense due to spine damage so like you pretty challenging at times as once need to go have to not later or tomorrow but now!
As often it's 'Claggy' but something like Veggies will change that into hey im coming NOW! so need to toilet or it's too late as probably Fibro cause? as irriates inside will set off something and know if try to hold bladder too long will upset stomach so can empty everything.
Yes, I also have faecal incontinence due to the Scleroderma and recently went in to have the internal sphincter injected to build it up, however, in my eight week follow up I have found that this hadn’t helped. My Consultant has now mentioned electro therapy to help stimulate the muscle but he did say that there is no evidence to say it works for patients with Scleroderma but will speak to someone at The Royal Liverpool Hospital as this is where the procedure is done. The last option is to have a colostomy bag. So will have to wait and see what the next step will be when I go back to see my Consultant in January.
Hi for a realy decent pad system for use that really does work is the Bambinex for adults it's a wrap round comes with a booster it's a AIO so don't leak and as comes fully round self contains it all so very discrete so smells etc contained you can get sheets to put inside so any matter is held.
They wash/dry easily as well and don't show under clothes which is a real bonus.
The Nappy lady does them at a decent price.
Another company that is making things is Blankencare all made in the UK by them.
Have them more for day and night time ones.
One thing i found/find is after using the Peristeen or Enema type is after a while find WET as mucus leaks as a change found a Tampon helps bit fiddly to use at first but once get in far enough comfortable after a few hours etc remove as settled then so stops it leaking.
Yes it's very common with scleroderma . Weak splinter or something that sound like it . Anyway something is weak in the bowel . My bowel is healthy but I have the same . . I find it a waste of time trying to get it fixed though you can get it fixed with a ring put inside. ( I think ) The Rhumeatolist doesn't quite understand s But the convective tissue expert does . And will help . . . But waste of time going for tube up the buck
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