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Old 11-16-2007, 10:37 AM   #1
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Join Date: Nov 2007
Location: Surrey
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Fistulas - another factor to consider with immuno-suppressant treatments

Hi,

I thought I would share our experience of fistulas. My wife had a fistula develop from the terminal ileum to her bladder and another that was not picked up that leaked into her abdominal cavity. Her physician prescribed immuno-suppressants to try and heal the fistula.

However, with the benefit of hind-sight, this was counter-productive as the immuno-suppressants simply allowed infection to set in from faecal material leaking from the gut into the urinary tract and her abdomen. As a consequence she developed sepsis, pneumonia, spinal osteomyelitis and a blocked ureter from swelling and scar tissue.

Basically, she needed a 6 month stay in hospital to recover. If we had known then what we know now we would not have left things for so long and we would have pushed for a resection sooner.

As it was she needed a temporary ileostomy in addition to the resection that was reversed after 12 months. She has now recovered apart from significant sacro-illealic pain as a result of the spinal osteomyelitis that eroded her spine.

My intention is to share our experiences and not to scare you. I believe it is important that you consider all the pro's and cons and that you empower yourself with knowledge.

My wife's symptoms of Osteomyelitis included extruciating back pain that radiated down both her legs, particulalry down the thighs and into her feet. She also experienced considerable fevers and "cold sweats". This was eventually put down to the sepsis. She also suffered cold sores all over the bottom of her face and numerous mouth ulcers. These resulted from the fact that her body was having to fight so hard to combat the infection in her body, while she was finding it difficult to keep nourished.

My recommendation is to keep pushing your health professionals to get accurate and up to date data points for them to make a clinical decision based upon the best available facts.

I hope you find this information helpful and I wish you all the best with your ongoing management of your condition.

 
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