Hi, I'm a newbie to the forum and desperately hoping for some support or advice.
I'm wondering if I am the only one in the world now living with both a jpouch and extreme gastric dumping syndrome. Would love to find others who understand how I feel. ....
My story in brief. In 2010 I had surgery (Nissen Fundoplication) to treat chronic acid reflux. It worked and I can no longer ever be sick or even burp. A few months later I saw my GI doctor to discuss the diarrhoea that developed since the op.
Long story short a colonoscopy find to check my bowel structure was ok revealed multiple polyps which I was told would turn into cancer. I had the "choice" to have surgery, had to wait to get it. April 2014 I had my proctocolectomy with loop ileo, and jpouch made.
In July this year 2016 I had my takedown. After dreadful complications I'm not doing badly now....but I live with a lively pouch and dumping syndrome. Basically it's dreadful diarrhoea if I don't manage food and fluid right.
I'm not meant to drink for 30 mins either side of food. Eat 6 meals a day. Low fibre. My nutritionist has great advice but has never met anyone like me.
I'm trying SO hard to get fit again. But my hydration levels and sodium are poor. If I drink lots I lose my food even faster (dumping ) . If I don't drink enough my kidneys struggle. (lack of colon etc )
Can anyone relate to this ? Can anyone recommend someone to turn to ? Im a born optimist but this is too much. I'm so weary of it all. Thanks ,
Busybee:-)