Hi all,
I have had my j-pouch for about 2.5 years now, and haven't had any issues with it thus far. When I saw my surgeon (5 weeks after final surgery) he said I would get a check up every two years. So far I haven't had any word about where or when this would be. (I've emailed my surgeon's secretary to ask for more information, but haven't had a reply...)
Can any j-pouchers in the UK tell me how often their checks up are? Are check ups done by IBD nurses, or someone else?
Cheers,
Albannach
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Hi, I live in Spain & see my GI every year to discuss how it's going. Blood analysis including B12 are taken. If I have any issues I contact my IBD nurse. On one occasion I had a Pouchoscopy as I had some issues, it revealed minor inflammation as is normal & was reassured. I don't think there is much they can check up on unless you have issues so I'd just ask for a full blood analysis. Glad you're doing well, I'm still improving after 5 years, patience is the key.
Paul
I'm in UK and exactly the same position as you albannach. Had my op 2.5 years ago and not been scoped or checked at all... Like you I don't think I have any issues so they don't seem that bothered. I had chats with the nurses just to monitor progress, and I've asked about scopes and they just say they will get me in for a scope at some point but it's not really required, and tell me it will be prioritised if I have issues.
Was your surgery elective? If you have signs of Cancer previously then I think they are pretty good at getting you in, but if the op was preventative and you have no issues outside of standard pouch function they consider you 'normal' so routine screening... Every 2 to 5 years I think was mentioned....
There are significant cultural and economic differences in this. Although it is possible to develop cancer in the rectal cuff, it’s uncommon. In the US this translates to regular pouchoscopy, perhaps annually, in many doctors’ practices. In other places the modest cancer risk is treated as less of an issue. Part of this is economic, since performing scopes is quite profitable in the US.
If dysplasia was found prior to colectomy then the guidance is generally different, and annual scopes are usually recommended more widely, at least in places where that is possible.
The rectal cuff is probably just as prone to cancer (per square cm) as the pre-colectomy colon, but it’s tiny. The cancer risk is statistical, so shrinking the target shrinks the risk.
Thanks for the replies. My surgery was because of fulminant pancolitis. I didn't have any pre-cancerous issues, but after the surgery the surgeon did mention the biennial appointment to check that the rectal cuff/anastomosis was looking ok.
Albannach
