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stanbudz

IBS and/or CREST

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My wonderful wife of 33 years died last Sunday due to Septic Shock. She was very bloated in her abdomen which was not unusual for her as she had been diagnosed with irritable bowel syndrome (IBS) 25+ years ago. She vomited because of the abdomen issue and constipation. Some vomit must have aspirated into her lungs and in 4 hours she was in ER and having a ventilator tube placed into throat as she couldn't breathe. After 7 days in ICU she was able to me moved to a sub critical ward and no ventilator tube. She was improving but at age 78 and frail health there was very little chance of survival. 

 

Over the last decade or so, she had lots of reflux and was on  pantoprazole for many years. She developed a very bad taste in her mouth and was unable to eat very much.

She lost weight, got very little nutrition, and was malnurished. As her caregiver over the lasy 3 years and her being bedbound it was hard to get to all the doctors and tests that might be needed. Gurney transport is very expensive and we spent many thousands of dollars getting to and back from doctors.

 

She was diagnosed with CREST last year when our doctor ran the ANA test. also last month he did ANA Titer which showed SLE.

No one ever really explained the CREST issues. She has Raynaud's forever, and esophagitis, and reflux and constipation for 25+ years.

 

Can CREST cause GI problems similar to IBS? Causing loss of mobility in the GI tract?

 

If we had known more about CREST etc we might have done thing differently.

 

She had Hashimoto's disease and we knew about the Raynaud's long before the CREST diagnoses.

She also had very dry eyes, and mouth, and also possible vaginal dryness and pain.

So from what I understand this could have been Sjogren's syndrome.

 

Sorry. just trying to understand more about WHY things ended up the way they did.

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Hi Stanbudz,

 

Welcome to these forums!

 

I'm very sorry to hear about your wife and send my sympathy to you for your loss. It sounds as if she had a lot of health problems and was having to cope with many unpleasant symptoms.

 

Certainly limited scleroderma (previously known as CREST) could cause the problems you describe with your wife's GI tract, otherwise known as Dysmotility Syndrome, which does have similar symptoms to IBS.

 

Unfortunately, a lot of the treatment for scleroderma (and other autoimmune diseases) consists of treating the symptoms, so it's possible that the result could have been the same, even if your wife had been diagnosed earlier. I realise that this is of small comfort to you.

 

I've include some links in my post, which I hope you'll find helpful and informative and perhaps they may help you to understand this bizarre condition a little better.

 

Kind regards,

 

 


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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