Ileo anal pouch turned out to be ileo rectal pouch!!

I was diagnosed with UC at 16years old. After many years of suffering and trying to come off steriods without success, I made the decision to have an operation to create an Ileo Anal Pouch in 2005, 6 years after diagnose.

In recent months I have undergone many tests as the 'old' UC symptoms seemed to have returned, urgency to use the toilet, loose stools etc...

After endoscopies, colonoscopies and various other tests it has now been revealed that when the operation was performed I was in fact left with some remnant rectum and in fact the procedure which was done was an ileo rectal pouch and not an ileo anal pouch as I had always been led to believe. Bearing in mind that I found this out 5years after having the operation it came as a great shock!!

The remnant rectum which has been left behind is now causing problems with proctitis, and I have also developed a fitsula.

I have tried remicade over a period of 6mths to try and elevate the symptons but eventually had to stop this as I reacted badly to it.

I was referred onto a surgeon who then explained my options, 1. To live my life with the remnant rectum and cope with the syptoms and 2. To have all the pouch and rectum removed and replace with a colostomy bag.

This decision was a difficult one as if the remnant rectum is left in tact it is at risk of cancer and secondly if I have all the puch/rectum removed there could be major complications, i.e ending up with short bowel syndrome and having a feed drip for the rest of my life.

Given the choice was the lesser of two evils, I have decided to leave the remnant rectum intact and live with the conditions but I wondered if there is anyone else out there that has a ileo rectal puch and can give advice on how to elevate symptoms of proctitis in the rectum.

It appears recently the proctitis has flared andI dont know whether diet or any meds can help with this?

I always now have 3mthly sigmoidoscopy biospy checks on the remnant rectum for signs of cell changes leading to cancer, does anyone else?

I would appreaciate your comments.

Thanks

When my operation was completed in 2005 I was under the assumtion this had happened and that the rectul cuff and lining had been removed. It is only recently when I was going through yet again another hard time that this wasnt the case.
I have had the opinions of the best consultant in the country for this who was as shocked as me to learn that the rectal cuff and lining had not been removed.
In his opinion the best step forward was 1. To live my life with the remnant rectum and cope with the syptoms or 2. To have all the pouch and rectum removed and replace with a colostomy bag plus a feed drip.
Both opinion have serious consequences as leaving the rectum would increase the risk of bowel cancel considerably but taking the rectum away ends all quality of life, all the day to day things that we take for granted would be taken away from me.
I thought after 2005 and the removal of large intestine this was going to be the end of all serious decisions I would need to make in my lifetime but no 5 years later I have to make what is now the biggest decision I had ever had to make.
I have only just turned 29, got married 6 months ago and want to plan a family and live what can be a normal a life as possible??