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  1. Hi Amanda and Robyn, I will get on to the Continence foundation; that seems a really good idea. Also I will soon get another opinion from another surgeon, as I feel I am too young, (54), to be living with this problem as it is for the rest of my life. As I've said before it does interfere with my quality of life, in that I don't have the confidence when I go out. Will let you know when I have some more news. Thank you to everyone who has posted and shared their stories. Take care, Anne
  2. Hi everyone, I visited the colo-rectal surgeon yesterday, and he confirmed that the problems I have with bowel incontinence are caused by scleroderma. He didn't think that much could be done about it, that is sucessful. Basically it sounded like "go away, and learn to live with it". I also have haemorroids which he is going to treat with bands, which I will have done soon. The doctor is a nice guy but very matter-of-fact. All this leaves me in a position that I'm very paranoid when I am not near a toilet. This disease really is awful, with all of its effects, and the effects on quality of life. While I was reading the other posts on this topic I realized there was people with much more to cope with than me. I will try to ignore the problems and get on with life as much as possible. I have 2 grandchildren that are beautiful and are 3 and 5, and I am going to my grandson's 'Special persons day' in about a week. There are things like this which I enjoy, but get spoilt by the bowel problems through not being confident that nothing will happen that is embarrassing. I still might get a second opinion about this problem, and whether there is anything that can be done that is sucessful, such as the SNS that Judyt mentioned. Thanks to Joelf and Amanda for the links they posted, they were very informative and I still haven't looked them all up, but will. Take care, Anne
  3. Hi Judyt, Thank you for being open and honest about how sclero affects you. I am sorry to hear that you have bowel problems on top of all the other effects that one gets with scleroderma. I also have incontinence resulting mainly from scleroderma. I am very interested in any procedures that can help this problem, as it is affecting my quality of life quite a bit. I feel as though I can't do some of the things that I want because of this. It gets me down sometimes, and it isn't the sort of thing you can discuss with anyone, so it does become lonely. It's great for me to have met someone else with a similar problem, and to hear that something can probably be done about it. Hope that the SNS goes well for you. Take care, Anne
  4. Hi Robyn and Jo, Thanks for the warm welcome. I do see a sclero specialist in Melbourne usually once a year, and have the blood, echo, and breathing tests done at that time. It's a long day when you get them all done on one day but it's worth it to get them done. We are lucky to have the medical care that is available. I really relate to looking well and feeling the opposite at times! My son knows I have an illness --scleroderma--but doesn't know much other than it affects the hands in the cold weather. Possibly a pamphlet would help, Robyn, to explain that it is more than that. I will look up the links to the medical information that Jo posted, so far I have looked up the Raynauds one which was interesting. I will keep you posted as to how I go with my appointment on Thursday. Anne
  5. I've suffered from Scleroderma for about 20 years, and actually have CREST syndrome, and it causes severe Raynauds, with my fingers going blue, white etc. For this I'm on Adalat (nifedipine.) I also have the gastro intestinal symptoms including bowel problems, which I have to see a specialist about this week. I find the winter a very difficult time, and it also increases the depression that I have due to Bipolar disorder, which I have also had for many years, before I was diagnosed with Scleroderma. I can't regulate my temperature properly, so I need to dress warmly even when often others are dressed in T-shirts! I haven't told a lot of people that I have Scleroderma, because I find it hard to deal with. I was very happy to find this forum about Scleroderma, when I was browsing. Anne
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