I have had scleroderma (diffuse) for 20 years and it seems to have become more active recently. One of my problems is poor bowel control and I have used Peristeen and lately qufora washout systems and renew inserts to manage this. I have had a neurosacral stimulator for just over 10 years but still have constant difficulty. It limits my mobility and general activities. It’s also difficult to manage as I have severe contractures and frequent ulceration of my hands. I am now considering having an elective colostomy and would appreciate advise and experiences good or bad from anyone who has had a colostomy for this problem.
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Lyndabickley
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hi there. I’m sorry you have the fecal incontinence part of scleroderma. I share this hellish aspect and also use Peristeen Plus but need heavy duty laxatives as well because otherwise nothing happens (my gastroparesis doesn’t help as need to avoid eating fibre) and I become impacted. I haven’t had scleroderma diagnosed for nearly as long as you but have been laxative dependent for about ten years and used Peristeen Plus every day for three years. I don’t have digital ulcers so far but I’m getting monthly Iloprost and before that I was getting extremely painful blisters on finger tips (Vasculitis my rheumatologist said). Life is very homebound and I now have tennis elbow so have to squeeze the water pump with right hand and this is getting harder too.
I’ve asked about colostomy and finally saw a surgeon in the summer. She said I’d need an illeostomy rather than colostomy and this is more invasive and problematic. Her reasoning was that if we only go for colostomy then my refractory SIBO and likely small intestinal pseudo obstruction would make colostomy useless. Ileostomy replaces the whole bowel rather than just part of it. She said that, because I have a combination of systemic sclerosis (limited so far but I carry a diffuse antibody) and some type of Ehler’s Danlos - there would likely be problems with healing and keloid scarring, hernias etc. So she was rather discouraging and I didn’t feel able to push her further because i l know from bitter experience that it’s a balance of risks. She did acknowledge that my scleroderma is progressing and that I’m immunesuppressed on Mycophenolate. So these both factor in too if I’m suddenly rushed in for emergency GI surgery as much riskier than non elective.
This reply probably doesn’t help you much but I can both sympathise and empathise at least. My rheumatologist says it is a balance of risks that only the MDT surgical team can make because the buck will stop with them but also I’ll be the one who has to live with consequences either way. Same would apply to you of course. Are you immune suppressed at all?
I have asked a couple of infusion patients who have stomas for similar reasons due to MS or IBD. They have been very helpful to chat to but they aren’t as immune suppressed as I am - just in getting their lidocaine for chronic pain. I think this is my main concern for myself because I’ve had post op wound sepsis twice and really scared of this so I just keep going with current regime for now and put up with the horrible worries about accidents etc - carry a bag of toiletries and plan my laxatives around my days activities. It’s far from ideal though. Feel free to message me if you want to chat xx
Thanks for responding. Your situation sounds harsh. I had a friend who had an iliostomy and seemed to manage it well but I know ( I was a nurse) it’s a much more extensive op and less easily managed. Such a difficult decision! but could prevent more problems later. Did those you spoke to with colostomies find their lives easier? I do, as you do, carry washout equipment and all the other paraphernalia to manage! I guess that would continue to be necessary with colostomy but could avoid accidents which are so embarrassing and messy. I take mycophenalate and as my scleroderma seems to have become more active again I may need to increase these. I have occasional Iloprost too. I rarely get constipated! If I do it can afford a days relief of risk but feel unwell if it continues more than 24 hours. I more often have the opposite problems which with a useless internal sphincter can be disastrous!! I use codeine phosphate if my bowel is in that kind of mood and if I had extreme diarrhoea, from a bug say, I would need to stay very near a loo!! You sound as if you carry on stoically and it’s so helpful to hear from others with similar problems. Thanks.
Hi I'm so sorry to hear you are having to cope with this. I've been diagnosed with limited scleroderma but it's taken a heavy toll on my bowels and I think my problems are similar although less severe at present. I'm prescribed sildenafil 25mg x3 daily but often only tolerate x2 for the Raynauds. They also prescribe heavy duty barrier moisturiser cream. Spasms in hands getting worse as is contractures. I have to use Loperamide 2mg every night so I can sleep though without needing to empty bowels. That has really helped if I can get timing right, then kick-start bowel first thing with coffee. My problem then is no idea if when I've finished going. Had a new toilet seat fitted that has a bidet spray function, which helped initially but now use qufora disposable cleaning inserts. Am using prednisolone when I have a new flare up but don't like taking it long term as I saw what that usage did to my mum who had mixed connective tissue disease. It really helps with pains and issues in muscles and joints.Also take omeprazole every night to hopefully stop Barretts oesophagus getting worse.
I was getting very depressed as my life has changed from doing triathlons back in 2018 to struggling to walk 15 minutes without getting breathless. GP who has been fantastic with helping me get diagnosed, suggested citalopram 10mg which has made a huge difference to my attitude and feelings I had of not coping and just being a burden. Thank god for pre paid prescription certificates!! I'm 57 and have to pay for prescriptions. I know all I've written hasn't answered your original question about colostomy but it's also on my mind as something possibly in my future. Best wishes to you
Such a drastic change for you. I hope you can get more stable and able to cope mentally and practically with your condition. When I first had this problem I was very tearful and avoided going out, but over the years I have learned to manage it. I’m not taking any antidepressants. It does still limit my mobility and the activities I do more than the other symptoms I have. For example I have to warn people that I may not make meetings etc on time as I can pretty much guarantee that just when I’m due to go out my bowel will act up. I think there’s a psychological effect. I have to be up at least 2 hours before I’m due to leave the house, eat and drink to ensure my bowel works then finish the job (several times) with a washout and still wear a pad and carry an emergency kit! I don’t go on holidays or days out which involve much walking or standing and do occasionally use an electric wheelchair as I’m usually safe if I’m sitting down. I’m hoping that with a colostomy I can clear my bowel early in the day and any ongoing problems will be contained in a manageable way (still not very nice, but less messy or anxiety provoking!) I’m hoping that it will also be easier to manage with my contractures and often ulcerated hands (I’ve recently had one index finger amputated!)and also if I ever finish up in a residential or nursing home (I’m 74!) it will be better understood and tolerated than frequent needs to be helped with toileting (I’ve worked in such environments so can imagine how irritating it would be for care assistants who may not understand my condition!) It’s so helpful to be able to share my feelings as it’s not the sort of issue one can chat about in social circles and can be a hidden disability.
Thank you so much for your reply. The fact that someone else actually understands.....I'm overwhelmed. I'm so sorry you've had to lose a finger. Any advice gratefully accepted. The toileting stuff just resonates with me, my situation exactly. I keep my fingers crossed you have some remission from this. I know the steroids help but it's not stopping anything, and I'm terrified of taking long term as I saw what that did to my mum. Just out of interest any family history for you of auto immune stuff?How's your experience of mycophenolate? I'm waiting to be referred to Salford as they have Systemic Sclerosis team. The more I see the more I think it's better to stop complications early by taking immune suppression drugs, but know nothing of side effects.
My scleroderma was diagnosed in 2004 when my fingers contracted over a couple of weeks. Other symptoms started then too. My first symptom was carpel tunnel syndrome, then I was diagnosed with gouty arthritis but a physiotherapist I was seeing to help with my symptoms recognised scleroderma and I was then formally diagnosed. I had a week in hospital in Solihull having Iloprost as I was living in Birmingham at the time and was subsequently referred to The Royal Free in London and prescribed Mycophenalate. Later I was admitted to The Royal Free for more Iloprost and possibly gamma globulin. In the end I didn’t need the gamma globulin as the Mycophenalate was working. I took that for about 10 years with no adverse side effects and was then weaned off but started with a small dose again this year (2023). I saw the rheumatologist in London each year and also in Birmingham and then Lincoln where I live now. I am not aware of any family history although my mother died of heart failure when I was 7, so could have had it. Since Covid I have not had much rheumatology support but have had colorectal support and hand surgery. As my symptoms have suddenly increased and I have had some complications on my echocardiogram (also an annual check along with lung function tests) I called the local rheumatology helpline and yesterday received an appointment date so hope I can have a proper review. I think I may need to increase the Mycophenalate. Glad it has helped to share. I find that too.
I really hope the new year brings you remission and relief from all the various issues and difficulties this condition throws upon us. Thanks again for the reply. I'm seeing rheumatology in Feb but hoping that transfer to Salford happens quickly as they have far more experience and hopefully practical advice.
Hello, I have only just read your post so hence the late reply.
I have limited diffused systemic sclerosis since 2010, previously scleroderma since 1996. In 2010, without warning I collapsed and rushed into hospital. The diagnosis was made difficult as calcinosis was masking my organs on all scans. Only when sepsis began to show was I taken to surgery and woke some days later in ICU with an ileostomy.
I note in a previous post it says an ileostomy removes the whole bowel but mine removed my colon and large intestine which were necrotised.
After the initial few months I can honestly say my ileostomy has not prevented me from doing anything I want to do. I know what my bag will react to food wise and often take the risk for a curry!
I wish you success with your operation and hope your life changes for the better 🥰
Thanks for your response. A scary situation and thankfully you have come through it safely. It’s good to hear positive feedback about managing an ileostomy. I wonder if the necrotising of the colon is something that could happen to me in the future?! At the moment my bowel seems to be mostly healthy and my incontinence is caused by a dysfunctional internal anal sphincter. My neurosacral stimulator was to try and solve that but although I’ve tried several programmes it hasn’t really solved the problem. I have attended a support group for people with these stimulators but most people need them for injuries caused by childbirth and find them helpful. Hopefully you will continue to have a full and active life. Thanks for your reassurance.
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