Thursday 7 May 2015

Ehlers Danlos Syndrome Awareness Month 2015- Fact 7

The credit for this graphic goes to the Invisble Zebra Facebook page. Please go and like their page and tell them that I sent you

I have had a lot of experience with GI problems caused from EDS. When I was a baby I had severe reflux I was unable to keep a bottle down and I would turn blue when I threw it up. As I got older I never had a huge appetite I was very skinny. I always felt nauseous and had abdominal pain. I never had regular bowel movements. As I got older things just got worse, It was not uncommon for me to go a month without using my bowel. The pain just got worse, I was lethargic all the time, barely left my bed was vomiting more than 5 times a day. I was put into hospital and put on laxatives through a NG tube. I was in the hospital for 6 weeks. My bowel was so close to rupturing when they started the surgery and they said if I had waited any longer I wouldn't be here. I was fitted with an ACE (I can explain that in another post if anyone wants that) which is where they use your appendix and makes a tube from your bowel to your abdomen and everyday you put a catheter in with medication that flushes your bowel so that you can go to the toilet regulary. I was the first person to be fitted with this with EDS. They also had to remove half of my bowel.  Things have improved but I still get nauseous, I still have pain and my GI tract is not normal but its better than it was




Thank you for reading, please share this to raise awareness of EDS. Also please go like the Invisible Zebra's Facebook page.


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