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

I had to have a diverting ostomy after a really bad bout of pouchitis I developed really bad inflammation like you from the diversion My GI put me on Entyvio and immediately it cleared it up and a month later I was able to have takedown number 2 I do need to stay on it long term but with so many new things out now you should not need to lose your pouch I would never want to go thru that surgery good luck 

Thank you all ...All you Lovely People XO  Thank You for your informative and very helpful replies and tips. AllyKat....so you had a Fecal Transplant ???   any results from that ??

   I'm putting the surgery off for as long as possible . I got Cipro and will try that next time , maybe in combo with Flagyl  ??

  Hoping to get even more feedback ..

Thanks again  XO

Hi Magoo.  I have had my pouch 16+ yrs, and have hadchronic pouchitis for 15 1/2 yrs of that time.  I have taken Cipro during that time, either 500mg or 1000mg / day pretty much the whole time.  For first 14 of those yrs, it worked great and only in the past yr started to lose efficacy.  I have recently gone off the Cipro and now on Remicade therapy.  Results are about the same for me.

 

It is worth discussing potl risks of longterm Cipro use with your doc.  I never experienced any of the major contraindications (neuropathy, tendon rupture), but worth finding out about them.  If it were me, I would ABSOLUTELY try antibiotic therapy before surgery - even if only from a risk point of view.  Happy to chat more if hou want to PM.  I hope yer love life stays strong!

Hi Darren ....Thank you so much for your thoughtful reply . I have decide to take the Cipro for me next flare-up . I have had enough surgeries already !!!

    It is nice to have found an Ostomy Lady to be close to . Nice not to have to worry about leaks and accidents ....or about those annoying noises haha !!  We get along very well and have great sex !!!  also so we do not want to lose the wonderful experience of having sex again.  It makes such a difference to one's state of mind !!!  She said that even if I did have it and wound up with ED ....My big worry ...she would enjoy all the other ways that a man can please a woman in bed ....there are a LOT  haha....we've been practicing some of them to perfect the other techniques  lol.  The Tongue is an amazing tool for many jobs ....especially in the bedroom !! 

Later  Darren . Thanks again .

 

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