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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:-) 

 

 

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Hi Scott and Jeff'smom, 

Thanks for your replies and thoughts . Taken me a while you get back to you as things have gone a little pear-shaped just recently . 

I've tried adding the fibre supplement to my daily routine but it seems to speed things up rather than slow them down. I'll give it another try in a few weeks maybe. They always say to come back your things if they don't work the first time  .

After posting I got to see my gastrointestinal consultant, who said that it's still very early days . When I told her off all that had gone wrong after takedown 5 months earlier her words were that's it's amazing I'm not having more issues. 

My jpouch has settled a little .  my biggest problem  remains the dumping syndrome . I lived with it when I had a colon but the capacity of a jpouch to cope with the sudden rush of food, mostly undigested, is nothing by comparison . 

I asked to see my dietitian again and hope that she will help . I just wonder if there is another pouchie like me in the world?  Would be so interesting to swap notes ! 

It has almost 4years that I have had my pouch. I, too have dumping syndrome. I have 20-25 movements a day. The least I have ever had is 15and I can count them on one hand. I have gone to my surgeon, Drs , tried all kinds of drugs. It seems the second I start to chew I have the urge to go. If I want to go do something, I do not eat and take a dose of Metamucil powder.... That will give me 4hrs or so. Sugar does make things much worse, certain foods are not worth the misery of eating them. The Drs tell me also that they have never seen anything like this and are at a loss... They suggest I have reversal... I am thinking on that one. I am so glad to have this forum. It helps so much.

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