I am facing Removal of Rectum and J-Pouch due to chronic Pouchitis

Hi there   

      I am new to this site and I am commonly known as Magoo . I had a sudden Onset of Ulcerative Colitis at about 24. I had never been in hospital, never been ill for any reason until suddenly I woke up with an Ileostomy bag stuck to my belly .  After a couple of years I was offered a J-Pouch and I jumped at the opportunity to get rid of my plastic Baggie.  The J-Pouch worked pretty well for a number of years , allowing for a couple of wonderful relationships , etc over the years when it worked well for me.

    The Inevitable Pouchitis arrived and I put up with much pain and suffering in order to avoid having the Ileostomy  again. Eventually I had no choice and my J-Pouch had to be disconnected . A loop Ileostomy was installed with my Rectum and the J-Pouch left in place.  My Ileostomy is working just as it is supposed to and Is giving me no trouble so it is not a problem.

   Currently with my Rectum  in place and my J-Pouch  still in place  I have been advised that both should be removed in order to alleviate the chronic inflammation, pain and cramping that I have been suffering from . My entire Pelvic area has been feeling inflamed and in pain for months and I think I have to follow the advice of my surgeon. 

   Now to my questions.   

Just recently I met a lovely Lady ( It's been a Long Time !! ) and have been able to enjoy the affection and comfort that a woman can bring a long time Loner.  She also has an Ileostomy  so we can enjoy  some good times together without fear of embarrassment . My concerns should be obvious at this point as far as sexual function is concerned !!??  

How long and how bad is the recovery from the surgery .

What physical complications have you encountered .

How badly was sexual function affected ...if at all ?? 

I'm going to begin Cipro tomorrow to battle the Pouchitis before I decide on my surgery.  Have you tried Cipro alone or with Flagyl ?? was it effective ??

   Any information that might be helpful would be really appreciated .

Thank you All   , Eamon  and Happy New Year to All ...  

Original Post

I certainly recommend treatments to get a J pouch working properly before considering removal.  In my case, my J pouch had to be removed because of recurrent high grade dysplasia in the anal canal.  I strongly did not want to get an ileostomy and opted for a BCIR, which is similar in most ways to the K pouch.  The surgery involved removal of the J pouch and creation of the BCIR in one operation.  I had a good recovery and was able to do many of the activities I enjoy two months after surgery. After my original surgery, I had partial ED, but removal of the J pouch did not make it any worse.  With the BCIR, I am able to experience intimacy much better than if I had the bag. With whatever surgery you have, be sure to pick a surgeon who has done many of those procedures.

I too needed to have my j-pouch removed.  First I was diverted to a permanent ileostomy in hopes my j-pouch would get better so that I might be able to take down to using it again.  It didn't heal so I had it and the rectal stump removed.  During both of these surgeries my surgeon spent hours lysing an abdomen full of adhesions and scarring.  I am doing much better.  That was around 2 years ago.

My surgeon said the removal surgery is worse than the colon removal and j-pouch creation surgery.  From my point of view the surgery was much better than the original surgeries and the recovery was faster too.  The back door took a while to recover and I needed to sit on a cushion for months.  

I'm not male so can not speak to the potential sexual dysfunction question.  I went to the Mayo Clinic for my surgeries as I wanted someone that was an expert with lots of experience with the surgery.  If I were you I would make sure that the surgeon had the experience and expertise required to perform the surgery.  You will be sure to discuss the dysfunction question with your surgeon as well.  

There are several guys on here that had their surgeries around the time that I did.  You might want to read past posts in the Ostomy Forum here.  You could ask your question there and you could also send them Private Messages about it.  I'm telling you this in case you weren't aware of the section and the ability to PM members.

Good Luck

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