Carol's Story - Raynaud's

carol.jpg‘MY STORY’   by Carol Jell

I can remember at 15 years of age standing on the railway station platform in suburban Melbourne waiting to catch the train to work with my hands cold and white even then. I didn’t think anything of it because it’s cold in Melbourne, so why wouldn’t my hands be freezing, particularly as I didn’t always wear gloves being 15 years old and not always sensible?

In my early twenties I started having trouble swallowing and thought it was because I smoked too much - yes, I was one of those dreadful people who smoked. I also had an inactive thyroid gland and took medication for it.

After I had our son and a couple of miscarriages the heartburn was so bad that I told the gynaecologist and he suggested I go and have tests.  By this time our son was just over two and I was 32. The lack of circulation in my hands had suddenly become severe and I developed ulcers on the tips of all my fingers. 

I was diagnosed with Scleroderma by our local GP in 1978 and he sent me to a gastroenterologist. I stopped smoking after the last miscarriage and my hands improved dramatically much to the delight of the doctor who by this time was treating the Raynaud’s disease. 

The gastroenterologist advised me that perhaps it would be better not to have any more children, much to my husband’s and my disappointment, and he put me on a new treatment for ulcers as my oesophagus was ulcerated.   I took Tagamet and at the time this was a completely new revolutionary drug.  It worked well and I actually felt good for the first time in a long time. I never realised how unwell I felt until I was better.  I’m sure a lot of us can relate to that

In 1979 while on holiday I had a bout of diahorrea, which marked the beginning of the biggest health challenge I have ever had, although back then, the occasional bouts of diahorrea weren’t too hard to put up with.   I was told my bowel was dilated and that I could expect these bouts to occur occasionally and they would be treated with antibiotics.

The Scleroderma didn’t bother me much for many years except for the increased heartburn and the gastroenterologist altered the medication periodically and got it back under control. 

Unfortunately, over the years my large bowel became a mega colon and in 1994 I ended up in hospital with an impacted bowel. There was talk of surgery to remove it but I managed to soldier on, as my gastroenterologist was not happy for the surgery to go ahead even though the surgeon was keen.  I eventually went on to develop bacterial overgrowth and was put on antibiotics until 2000 when it became imperative that my large bowel be removed.  That was done with an illeostomy installed for five months and then reversed. 

The bacterial overgrowth continued and I was put on long term low-dose antibiotics, which helped for a while but then just didn’t work and I was continually plagued with diahorrea.   In desperation I tried probiotics from the chemist and they helped but only to a point.  Then my gastroenterologist heard of a new infinitely stronger probiotic. It has been my saviour! It’s called VSL#3 and is made in Italy.  It is purchased in Australia from a company called Orphan Australia situated in Victoria.

Even though the stronger probiotic was working well, I still had bowel problems due to a lax sphincter muscle – the symptom no one wants to talk about.

The doctors suggested I have a permanent illeostomy saying, that it would give me a better quality of life, so hoping I was doing the right thing, I went ahead and had the operation on 7th December 2006. After some depression due to my altered plumbing, I have survived, the depression was only short-lived, and I feel the best I have felt for years.  So well in fact that I have put on nine kilos!  Nowadays I can even laugh about my being a ‘Bag Lady’.

It is not easy for me to write about this as it is embarrassing, but I want people to know my story as it has a good ending and it may be of help and give hope to someone with similar manifestations of the disease to mine. 

 

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Please note: The new phone number for the Scleroderma Association of Queensland is 07 32773460. Our postal has changed too; it is PO Box 316, SALISBURY Qld. 4107. The new physical address of our office is 124A Evans Road Salisbury. If you would like to come and browse through some books in our library or have a chat or help, please visit on Wednesday between 9:30 and 12 midday.