Hi Helen,

I don’t have much experience with JPouch removal but I wanted to send along some encouragement.  Your story sounds like a rough one, but I bet you will feel better after the surgery.  You seem like a tough person and you will do great.  There are better days ahead.

Hang in there, Helen and let us know how it goes.

I'm sorry to hear that you've suffered and need another surgery.  You are quite right that most people can not understand how miserable life can be with a chronic condition.    

When I was getting my first ileostomy, and then my second, I sent for samples of appliances from different providers.   Most of these are free - you may need to fill out a form or get a phone call.   This way you will be able to try them out after surgery to work out which suits you best.   Plus take a look at the various support belts available - you may want one to add support when you begin to have a more active life.  Which will happen!  The surgery is a big deal, but you should feel ever so much better when you heal and no longer have daily pain. 

Hello Helen715,

Most people deal with medical issues on their own terms.  I've been in your shoes; it's a difficult decision to give up a j-pouch and go to a permanent ileostomy.  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 working with 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.  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 67 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.  My ileostomy turns 12 years old on July 19th.

Yes, be afraid of the surgery.  It's okay!  Only don't let it stop you from moving forward with your life with a permanent ileostomy.  Your life will be SO MUCH BETTER.

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

Look up some of my old posts if you can. 

(I'm too lazy and people are tired of my story by now. Lol.) 

My stoma has given me my life back. 

Fear is natural. I had fears. 

I feared the worst and got the best.  My life back!

Richard. 

When medical complications made removal of my J pouch necessary, I chose an option different than a conventional ileostomy because of my concerns about issues of having that procedure.  I realize many people do well with a conventional ostomy.  My choice was a continent ileostomy called a BCIR, which is very similar to a Kock pouch.  For both of those procedures, the surgeon creates an internal pouch out of a short section of the patient’s small intestine plus a valve that holds the pouch contents inside until emptied at the person’s convenience with a small plastic catheter.  No external bag is needed for these procedures.

I am a strong advocate of researching surgical options before making a decision.  To aid people faced with removal of their J pouch or a problematic conventional ileostomy, I wrote an article entitled, “Researching My Options” that appeared in The Phoenix magazine.  This article can be viewed on the Quality Life Association’s website (www.qla-ostomy.org) under the “News” key.  This website also contains detailed information about continent ileostomies that should be of interest to those who might consider this option.

Bill

Caty posted:

Hello Helen715,

Most people deal with medical issues on their own terms.  I've been in your shoes; it's a difficult decision to give up a j-pouch and go to a permanent ileostomy.  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 working with 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.  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 67 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.  My ileostomy turns 12 years old on July 19th.

Yes, be afraid of the surgery.  It's okay!  Only don't let it stop you from moving forward with your life with a permanent ileostomy.  Your life will be SO MUCH BETTER.

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

Wow Caty, thank you so much for your detailed response. We have some similarities in our painful experiences. It’s helped me to read your information, and given me hope. I’m glad you’re feeling better. 

Mysticobra posted:

Look up some of my old posts if you can. 

(I'm too lazy and people are tired of my story by now. Lol.) 

My stoma has given me my life back. 

Fear is natural. I had fears. 

I feared the worst and got the best.  My life back!

Richard. 

Thank you for your encouragement! 

BillV posted:

When medical complications made removal of my J pouch necessary, I chose an option different than a conventional ileostomy because of my concerns about issues of having that procedure.  I realize many people do well with a conventional ostomy.  My choice was a continent ileostomy called a BCIR, which is very similar to a Kock pouch.  For both of those procedures, the surgeon creates an internal pouch out of a short section of the patient’s small intestine plus a valve that holds the pouch contents inside until emptied at the person’s convenience with a small plastic catheter.  No external bag is needed for these procedures.

I am a strong advocate of researching surgical options before making a decision.  To aid people faced with removal of their J pouch or a problematic conventional ileostomy, I wrote an article entitled, “Researching My Options” that appeared in The Phoenix magazine.  This article can be viewed on the Quality Life Association’s website (www.qla-ostomy.org) under the “News” key.  This website also contains detailed information about continent ileostomies that should be of interest to those who might consider this option.

Bill

Thank you for this great information.