JPouch Removal- How are you now?

For those that have had their pouches removed, I've read many of your stories.  I know it is a HUGE surgery with risks and long recovery.  My son may be heading in that direction.  He is 18, thin, and had his first 3 surgery done laparoscopically so that should all be in his favor in term of scar tissue, recovery, etc.

My question is how are you doing today?  Do you have any permanent complications or lasting problems/issues?  Are you able to eat normally, gain weight, have energy? Do have any pain?  Do you still get any pressure or sensations of needing to have BM at the rectal area? Do have any pain or other issues now that you have recovered?

Original Post

I had a j pouch for 30 years that had to be removed due to recurrent high grade dysplasia and a malignant polyp in the anal canal.  I strongly did not want an ileostomy with its associated issues.  Fortunately, I did research on the K pouch and BCIR, two options that do not require having an external bag.  I opted for the BCIR, which has worked out very well for me.

Removal of my j pouch was more difficult than normal due to dense adhesions that resulted from three previous surgeries, but my surgeon was able to do everything (including the BCIR) in one operation.  I had no problems making the 12 hour trip home by plane and car and was able to do many of the activities I enjoy soon after returning home.  It took a while to fully adjust to my new plumbing, but I am able to do anything I enjoy (including heavy lifting) and eat a normal and healthy diet.  I have no pain from the procedure, no leakage and empty my pouch 3-5 times a day at my convenience with a small plastic catheter.  Although I had a significant weight loss after surgery, I regained over half of it back and now need to keep from gaining more.  My bottom healed very quickly and I have no feeling down there that I have to “go”.  I do feel internal pressure when my BCIR pouch is full, but that is just a signal that it is time to empty it.  There is a lot of information about the K pouch and BCIR that I would recommend if your son would have interest in either of these procedures.  Best of luck with whatever you decide to do.

Bill

Dear Momma,

I've put off writing about my experience because most people deal with medical issues on their own terms, of course.  In 2007 after 15 years with the j-pouch and complications from a vaginal/j-pouch fistula, I had my j-pouch removed, was given a Barbie butt, and now have a permanent ileostomy. 

If a person is connected to an excellent hospital and surgeon, they will have an easier time with this surgery.  I had my surgery done by Dr. Juan Nogueras at the Cleveland Clinic in Weston, FL.  My surgery took over five hours, but everything went well.  The only thing the surgeon faced was that after many fistula fixes that failed, my j-pouch had adhered to the vagina and he had to stop abdominal work and enter through the vagina to finish removing that last bit of j-pouch tissue.  Post surgery, I recovered quickly with no complications.  Upon discharge from the hospital, I had the best night's sleep I had had in years in the hotel before my husband and I headed home the next day.  My wounds healed up nicely within a 12 week period with no complications.  The wound below was sore but manageable and became even more comfortable after the stitches dissolved.  The abdominal area was sore but that wound healed up in no time too, especially after the staples were removed a week later (another long trip to Weston, FL).

I was so sick before I got my permanent ileostomy.  Back then I worked 20 hours a week as an executive assistant for a CEO for many years--half of which time I had stool coming out of my vagina and anus non-stop.  My skin was raw and everything I ate caused me great pain when eliminating.  I suffered for a long time and continued my normal routine because I was afraid of the permanent ileostomy.  Why did I wait so long...

Now I have my life back again.  I eat anything, sleep all night, have more energy, gained weight, and there are days I just plain forget I have an ileostomy.  I was diagnosed with ulcerative colitis in 1972 at the age of 38, have had over 13 fistula repair surgeries and procedures, and finally received my permanent ileostomy at age 54.  I'm almost 66 now and life couldn't be better.  My husband and I are finally able to travel and have lots of fun.  Our lives are no longer on hold.

Yes, be afraid of the surgery.  It's okay!  Only don't let it stop your son from moving forward with his life with a permanent ileostomy.  His life will be SO MUCH BETTER.  People he knows really just want him to feel better and get well; they love him.  The permanent ileostomy will not hold him back.

I write this for all the people out there who are having lots of j-pouch problems.  I know there are thousands of happy j-pouch people.  I'm only offering these words to those out there who are suffering.  I just want them to know that a permanent ileostomy can be a life saver and a new beginning.

 

Caty

 

He has a diversionary loop ileostomy now and has come to accept that it may be permanent one day. We still are going for tests and there might be the ability to salvage it. On the other hand we know that it may need to be excised at some point. He hasn’t thought about the bcir. Is that the same as a k pouch?  Neither of you have any long term problems from pouch removal?  He wants to be done and is worried about the long term end result. 

Oh and our surgeon (very reputable Dr. Khaitov at Mt Sinai) has removed 20 pouches (one of his own, the rest came from elsewhere).  Do you think 20 enough experience?

Hi Momma,

The BCIR and K pouch function the same, but the BCIR has a collar made of small intestine to stabilize the valve better.  Both procedures have a high success rate and high patient satisfaction.  The BCIR Program web site (www.bcir.com) has a lot of information about that procedure plus some videos and contact information.  I recommend trying to save the j pouch since there is no going back after it is removed.  The majority of people with K pouches and BCIR’s have good long term results.  Like any major surgical procedure, some people have complications, most of which are treatable.  I have had no problems with  my j pouch removal.  Twenty pouch removals suggests good experience. My BCIR surgeon, Dr. Ernest Rhenke in St. Petersburg, FL, has done many more than that and you can request a patient contact list through his web site at www.bcir.com.  Please feel free to send me a PM if you have any questions.

Bill

I had mine removed 4 years ago and I am so glad it is gone. I had a really rough surgery because the j-pouch had attached to my bladder. The doctor said he to scrape the pouch off the bladder and i ended up with a big clot in my bladder that caused me to have 3 pints of blood but I am still glad I had it done  ✅ 

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Suzanne WM
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