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Old 07-13-2012, 08:48 PM   #1
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I have Polyplastic Polyposis Syndrome. What does it mean?

Hi there,

I have just been diagnosed with Polyplastic Polyposis Syndrome, and I don't know what it means! I asked the diagnosing doctor a few questions not realising it was so uncommon. I haven't been able to find a definition on google, in libraries or anything, andI can't get into contact with my doctor as he's too busy. Does anybody know a thing or two about this condition? Anything at all?

I'm only 23 and just had my first colonscopy. I had no less than NINE polyps removed. My doctor has diagnosed me with Polyplastic Polyposis Syndrome, which I think basically means I have a high tendency for developing these precancerous polyps. So I will have to have repeat colonoscopies every 1-3 years to have the polyps removed, or alternatively have the whole colon removed. I am an otherwise fit and healthy guy, so i really can't understand why I would be getting this, and why so many polyps.

The reason I had the colonoscopy done in the first place is because I have abdominal pains and no amount of specialists, testing or medication seem to do anything about it. While I was lucky that the colonoscopy found the polyps, I still have no idea what the cause of my pains are. My doctor has diagnosed me with Irritable Bowel Syndrome (IBS), which is basically the doctor saying he doesn't know what it is. I get the pain a few times a week and I am in fair amount of pain unless I lie down for an hour or so. Because of this reason, it has been very difficult to hold down a steady job without having to always go home sick.

I discovered recently that tap water aggravates my pains, and since then I've been drinking only bottled water, but tap water ice and boiled tap water are fine, which makes me think it is a bacterial problem. If I have so much as a lass of tap water, about half an hour later I will be writhing in pain that will last for hours.

If anyone has any idea about this, then please let me know.

Anthony
Sydney, Australia

 
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Old 08-14-2012, 07:04 PM   #2
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Re: I have Polyplastic Polyposis Syndrome. What does it mean?

Polyplastic; Assuming , or having the power of assuming , many forms; as , a polyplastic element which does not preserve its original shape .
That undergoes several transformations into different forms

Basically it means that your polyps which grow, wherever they may be, can take on many shapes and sizes.

Just because you have polyps doesn't mean you're unhealthy in anyway. It could just be that it runs in your genes and maybe no-one else has noticed they have it. Usually polyposis of any form is hereditary.

 
Old 01-16-2013, 10:05 AM   #3
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Re: I have Polyplastic Polyposis Syndrome. What does it mean?

I was diagnosed with hyperplastic polyposis syndrome about 18 months ago. I had 40 hyperplastic polyps removed in 2 sittings a year ago and I've just had this years results back but the surgeon refused to remove them and said I had to have my bowel removed urgently. I've now found a colonoscopist at a world centre of excellence for bowel polyps in london. He is now going to manage me as I found lots of consultants that knew nothing about this syndrome but would give their opinion anyway. I found out most of the details from going for gene testing. There isn't a known gene yet but they knew about the syndrome. And I've given blood to Oxford university that are trying to find a gene. My dad's mother and her father both died of bowel cancer but due to fragmented family only just found this out.
The syndrome gives an 80% chance of bowel cancer, it's not the normal route as hyperplastic polyps are normally safe. The syndrome is normally given to people with 20-100 polyps found in the bowel, ranging from 1mm to 3cm. but over 5 polyps is bad. I've been advised yearly removal of polyps so any precancerous cells will be found quickly. When cancer occurs it moves quicker than the normal polyp route. My immediate family had to be checked and my sister has to be checked every 5 years. They were found to be clear. They say that smoking and high fat diet can heighten Chances of the syndrome. Which is me, not my sister though. Smoking also makes symptoms worse. I was told my bowel over works which is why I get pain, I'm self employed so time off with pain isn't good for me. I found that removing gluten and dairy from my diet helped my symptoms lots, oh and no alcohol. I'm still on painkillers but mainly mornings are worst for me.
I've been reassured that it can be managed and bowel removal will only have to happen if I get cancer or the polyps get too big. But that it's unlikely.
Everything I've read on it doesn't mention the pain. So I'm pleased I'm not the only one.

Last edited by Administrator; 01-16-2013 at 11:38 PM.

 
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