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Still something new after 13 years..

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#1 tisonlyme


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Posted 21 February 2012 - 07:16 AM

SSc sure is impressive.. it can still throw something new at you after 13 years..

I'm not that impressed with the 'new' effects though. I thought I'd managed to dodge the bowel involvement - well I suppose I did for 13 years, wooh go me!

Thought I just had a bit of a stomach bug over the last few days but it turns out I'm off to be poked and prodded by my specialists again, I was only there 2 weeks ago. I only went to the general practitioner because the constant trips to the toilet meant I might as well be putting my meds in the bin - everything is hurting. Explained to the doctor what the problem was 'ah that will be the systemic sclerosis, bowel involvement, we need to let the hospital know'- all this time I was under the impression that my issues with dairy were down to a lactose intolerance and the white bread problems were just 'one of those things' - seems that by avoiding both I had been helping myself without realising. I just need to make a few more dietary changes now.

On the 'upside' at least the general practitioner has a clue about SSc. Even if she did just assume I knew that was the cause, a little patronising but at least she didn't just tell me I must have had a dodgy takeaway

Anyone have any advice on what has worked for them and how I can help myself while I'm waiting for the hospital appointment?

Take care

#2 Joelf


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Posted 21 February 2012 - 09:54 AM

Hi San,

Sorry to hear that you're now suffering bowel involvement and all the unpleasant symptoms that go with it.

I'm extremely fortunate that I haven't (yet!) experienced this myself, but I have a good friend who has had gut and bowel problems. To a large extent, she improved the situation by a fairly strict adherence to a diet which didn't include much fibre, vegetables and fruit and also sadly chocolate! :( She does find that she can tolerate those foods but only in very small quantities. I've found a thread on IBS diet which I hope might be helpful to you.

It is handy to have a doctor that does at the very least recognise the seriousness of Scleroderma and realise the importance of referring you to a Gastro specialist; I do hope that you won't have to wait too long for your hospital appointment.

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#3 Amanda Thorpe

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Posted 22 February 2012 - 09:45 AM

Hello San

Thank goodness for your doctor knowing immediately what the issue was and referring you straight back to your scleroderma specialists! Can you imagine if your doctor had decided to try and fix you themselves? Pre scleroderma I had a colonoscopy and I recommend sedation beforehand, apart from that I can't say but look forward to reading about how you get on!

It is hard though, that scleroderma never seems to go away, in August I will have been diagnosed for 5 years and was looking forward to fulfilling the "it can plateau after 3-5 years", somehow I don't think I will as I am having a major flare right now!

Take care.
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