A GASTROGRAFIN enema, they shoot dye into the pouch from the bottom and xray it. Some people get a narrowing or kink where the ileostomy was closed

Hey Tom,

I don't know if my situation was exactly like yours, but there was part of the pouch that was getting too big and needed to be taken off and the small bowel was reattached to the pouch at that place. It was done in one surgery, as I think it was considered a resection/revision. So don't think about "goodbye." Think, this can be fixed. 

Also, I think my test was an MRI with dye. Had to drink something like crystal light at the place and wait a while then they took me in and did the MRI with dye going into my IV. I could be wrong, but this is how I remember it. Weirdly it made you feel like you had to go peepee. Pretty easy test overall.

Wishing you the best!!

Thanks for your responses. It feels like by remaining bit of rectum is slightly folding in on itself and making it difficult for me to empty. I've Got a proctor am , MRI and examination under anaesthetic all lined up so hopefully it will reveal what is causing my problems.

There must be some more people here who have experienced long affefent limb problems? Surely it can't just be me!

I'm keen to hear your story so please do tell and share.

Hello!!  I too had this problem and had a pouch redo.  Dr Remzi at the Cleveland clinic did the surgery and I follow up with Dr Shen once a year.  It was a difficult surgery and recovery but can say I am doing very well and am very happy with my decision.

When I can't empty my pouch completely or have trouble, I use my anal catheter and it works wonders.  when I am constipated I found that the only cure is to drink two big glasses of Welch's grape juice.  No my favorite but it does the trick.  Good luck

Thought I'd give an update - the title of this thread should actually read Efferent limb syndrome (not Afferent). A small but important distinction as it is my pouch outlet rectal cuff  that is elongated not my pouch inlet. 

Anyway I have finally been diagnosed with Efferent limb syndrome and am to have abdominal surgery in London to take out the pouch and cut the excess rectal tissue off that is causing all the problems (3-4cm of rectal cuff I'm led to believe). This will then be pulled down and attached to my anus. I will need a temporary ilestomy for 2-3 months to allow for my insides to heal before takedown.

In no certain terms I've been told by my consultant that this is far from straight forward surgery but is doable. Depending on what the surgeon sees he may try and construct a brand new pouch instead of re-doing my current one and if for whatever reason my pouch can't be 'pulled down' I may wake up from theatre with a permanent stoma. But hopefully it will go well, I can only be optimistic.

Anyone who has had this surgery I'd really like to hear from you especially regarding recovery time.

Thanks, Tom (UK)

This is called Pouch Advancement Surgery. A number of folks here have had it and may be able to share their experiences.