Michelle, I had my j pouch for 30 years and experienced problems similar to yours.  I strongly did not want an ileostomy with its associated issues, so I adapted my lifestyle to allow doing what I enjoyed.  During this time, I had a full-time job, skied in the Rockies, participated in equestrian competitions, traveled abroad and had a good social life.  I suggest that you get a second opinion from a doctor who has lots of experience in dealing with pouch problems before considering pouch removal. There may be other things you could try to obtain acceptable results with your pouch.  Once your pouch is removed and your bottom sewn up, there is no going back.

In my case, I had recurrent high grade dysplasia in the anal cuff and removal of a malignant polyp there appeared to have significantly weakened the sphincter.  The j pouch had to be removed.  Although the surgeon I saw at Mayo Clinic for a second opinion recommended only an ileostomy, I still did not want one.  I did additional internet research and learned about the BCIR (similar to the k pouch) that does not require having an external bag.  These procedures are not widely known and are performed by a limited number of surgeons.  I opted for the BCIR and the surgery went well.  I now have a very good quality of life and can do all the things I enjoy and not have to be concerned where the nearest restroom is located.  In some cases, the surgeon can use your existing j pouch to make a k pouch or BCIR.  I wish you the best with whatever you decide to do.

Bill

Bill,

Thank you for your reply. I too work full time, in a school....talk about tricky schedules..hahah... and my husband and I have recently bought a Harley for our 25th anniversary so I am active, however...I don't eat before/during riding or hiking,(talk about exhaustion but it will immediately trigger bathroom issues, I don't eat when we have plans, I don't eat when I'm with friends if we're out..food has become quite the enemy and I LOVE food..haha... I mentioned a K-pouch to my doctor and he said they basically don't do those anymore. I will certainly look into the BCIR as I've never heard of it.   I guess I'm in a place where I feel like I go more often than people w/active UC/Chrons and I'm over it. With my average bathroom trips so high, I've noticed my sphincter  weakening...and we all know what That means!!  It's Alllll bad news when you're on a trail in the middle of the White Mountains..hahaa.... Plus, You know you're desperate when at 47yrs old, you'd consider a bag hanging from your belly over a J-Pouch. I'll take quality and activity over vanity, any day!!
I'm going to research the BCIR and see if that's something that could help.
Thanks again!

Your doctor is correct in saying they don’t do k pouches much anymore.  Most people now get the j pouch, which became the “gold standard” due to its success rate and maintaining the use of the anal sphincter.  The k pouch and BCIR are now used primarily by those whose j pouches don’t provide acceptable results and those who have problems with end ileostomies.  If you think that weak sphincter muscles are a factor, your doctor can test their strength with a manometry exam.

My BCIR surgery was done by Dr. Ernest Rehnke in St. Petersburg, FL.   He has done thousands of this procedure and I received the best of care from him and the hospital staff.  He will be having a free seminar on the BCIR in Manchester, NH on Saturday, August 12.  You can get lots of information about the procedure and register for the seminar at www.bcir,com.  I usually empty my pouch about 4 times a day at my convenience and have gone up to 12 hours between intubations.  I have had no leakage of gas or stool, no skin irritation, and I can eat almost anything I want.  Please send me a PM with any questions you have.

Since you said you are at Boston Medical, if your insurance allows it, get a second opinion with Dr. Bordeianou at MGH. I just met with her and she was the best surgeon I've met with in terms of acknowledging the pluses and minuses of this surgery. Plus, if you decide to do an end iliostomy (not a loop, like we had with the jpouch surgery), there are far fewer problems with the stoma, I learned. 

I'm struggling with accepting my future with an iliostomy, but I also know the freedom it will allow esp for hiking, teaching, and working. Sounds like my diet can improve as well!

Best of luck to you in improving the quality of your life.

speaking as a boston resident, who contacted doctors in boston about a K, i agree they are not familiar with them.   i had mine done in Cleveland.  since then i go to a doc in nyc, of which there are several who will do k pouches.  the bcir is a different type of valve, but is the same in that it is a continent ileostomy.  my suggestion is that you read through the k pouch korner posts for additional info prior to talking with another doctor.  mgh is no better versed in them than boston medical!!  

that said, i wonder if your problem isn't diet.  there is a fantastic dietitian at BMC, lorrie young, who helped me when i was having problems with my J.  unfortunately for me the pouchitis was uncontrollable.  also, i had a serious medical error, which never should have happened, by none other than the mgh surgeon that the other person thinks is great.  or is part of the problem that your pelvic floor muscles aren't strong enough?  there is therapy for that.  both diet and pt are far better options than even considering a k or bcir!!

good luck.  janet

I was speaking about an iliostomy, not a K pouch or BICR. These are not options for me as my diagnosis changed to Crohn's, so I, like the original poster, are considering iliostomies and I had a good experience at MGH exploring having the jpouch removed and an end iliostomy. My surgeon seemed very familiar with the procedure.

Hi Michelle, I am also considering pouch removal. I actually just posted a survey on this topic a coupe of days ago int the survey page. I have mine disconnected but its still there 7 years now. you can still get diversion colitis with it still there, which I have. Also cuffitis, and strictures. So some people consider removing the pouch when they have it disconnected. If you leave it in, it  means you will need a 2nd operation later to have it removed if needed if causing problems. I hope to follow the survey results to hear more about peoples experiences. 

I had mine removed, no regrets. Like you, my scans all showed a relatively "normal" pouch, but the constant bathroom visits and the fear of my pouch acting up were doing a number on my head. The meds I was on were creating other problems. I needed the drama and anxiety to end and that's what I got. I also have an active lifestyle and nothing stops me now. You can pm me if you'd like. 

Lambiepie posted:

I had mine removed, no regrets. Like you, my scans all showed a relatively "normal" pouch, but the constant bathroom visits and the fear of my pouch acting up were doing a number on my head. The meds I was on were creating other problems. I needed the drama and anxiety to end and that's what I got. I also have an active lifestyle and nothing stops me now. You can pm me if you'd like. 

Same here. 

I ditto that. 

Removed all my problems. 

It was a quick fix for me. 

8 weeks and I was back to work and felt as normal as I am gonna be. 

That's a good thing.  I have no regrets. Zero.  

I don't read as many magazines as I used to. That's about it. (reading material for all the bathroom visits.)

Richard. 

I had mine removed and my end ileo is nothing like the temp one I had between my j-pouch surgeries. I feel better and can actually do things like going out to lunch again. My quality of life has improved. 

I had my J-Pouch removed in 2015 and now have a permanent ileostomy.  I could not be happier.  Had my pouch for 13 years in which the last 4 were absolutely horrible.  Just wish I would have had the reversal surgery sooner. 

Every case is different of course.  I always have complications with healing, so I already planned for this going in.  But it had nothing to do with the ostomy. 

My quality of life has been 1000% better.  No more worries of having to rush to a bathroom and then not make it.  No more worries of constantly being sick.  Pouchitis, the list goes on and on.  I Can do so many more things than I could in those last 4 years. 

Oh and your Dr. should be a fan of you having a great quality of life.  Not tell you that that he is not a fan of reversal. (which btw, my Dr. was fine with it) You shouldn't have to be taking that much immodium to still have to get up during the night.  That's just my opinion.

May you find peace with whatever decision you make.  It is not an easy one. Please feel free to PM if you would like.  I would be more than happy to answer any of your questions.  I do this quite often with patients of my Dr. 

Tootsie posted:

I had my J-Pouch removed in 2015 and now have a permanent ileostomy.  I could not be happier.  Had my pouch for 13 years in which the last 4 were absolutely horrible.  Just wish I would have had the reversal surgery sooner. 

Every case is different of course.  I always have complications with healing, so I already planned for this going in.  But it had nothing to do with the ostomy. 

My quality of life has been 1000% better.  No more worries of having to rush to a bathroom and then not make it.  No more worries of constantly being sick.  Pouchitis, the list goes on and on.  I Can do so many more things than I could in those last 4 years. 

Oh and your Dr. should be a fan of you having a great quality of life.  Not tell you that that he is not a fan of reversal. (which btw, my Dr. was fine with it) You shouldn't have to be taking that much immodium to still have to get up during the night.  That's just my opinion.

May you find peace with whatever decision you make.  It is not an easy one. Please feel free to PM if you would like.  I would be more than happy to answer any of your questions.  I do this quite often with patients of my Dr. 

I had mine removed in 15 too. October will be two years. And I agree with all you have said. 

It's an alternative that works. And works well. 

Richard. 

Richard, I'm so happy it is working for you as well!! December will be my 2 years.  Although I had wound issues for 6 months after, the Ostomy was wonderful during all of it!!

I guess it's going better than I thought!  I actually had my reversal done in December of 2014! So almost 3 years already!!

Thank you for all of these replies. Because I had emergency surgery 12+ years ago, I was ignorant of all A-Z Pouches...now I'm a little older and trying to be wiser. You've all been an incredible encouragement. I never realized there was a longevity with the J-Pouch and will have to see what the BCIR is about...but I'm leaning towards an ileostomy simply because it's one and done. I'm thrilled to hear that the potential for a normal stoma is there and when I'm ready to take the leap, I  will go in armed with information and confidence. I love that you're all enjoying life without being chained to a bathroom and for the first time in years, the prospect is exciting for me!!
Blessings  

Richard,

It's good to hear how positive you are after all you have been through.  If I ever need to go back to an ileostomy, I know I could do it.  Like you, it would not be the end of my life!

Hello Michelle R,

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 65 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 turned 10 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

1. Caty. 

Your first sentence says it all.

You wrote it very well. 

(some it sounds too familier) 

Thank you. 

Richard. 

Caty, you couldn't have said it any better.  I'm so happy for you.  I feel I am on the same boat as you.  Actually, it feels more like a cruise ship!

By the way, something I haven't said - I am the 3rd person in my family to have an ileostomy.  My eldest sister has had hers since 1981 and my Mom since 2007. 

Yes! We are the bag ladies!!

Good Luck to all of you.  One day at a time.  That's what you need to do.

DeAnna

Caty posted:

Hello Michelle R,

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 65 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 turned 10 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

Girl, You are a Rock~Star!!! Thank you sharing so openly. I spoke with my husband and told him we need to gear up for this next phase because it's happening. Haven't decided which yet, but it's game on. Can't wait to lose these bathroom shackles and tackle the White Mountains!!
Michelle

Hello, MichelleR. 

When I had my temporary stoma (3 months) it was also tiny and flush with my skin, sometimes it snuck back below my skin line, then pop back up. It was torture because of the burning acid that poured over the surrounding skin regularly. I learned afterward that the surgeon could have placed a temporary rod under the stoma to hold it up above the skin line, not allowing it to slip back, and so stool would exit properly. He didn't think I would need one so didn't place it and the ostomy nurses don't like it because it makes the first few changes difficult (getting the wafer opening around the rod). You could make sure your surgeon knows you want a rod placed there temporarily. It might help the stoma heal above the skin line. Good luck to you.

I had a bridge with mine.  It was made out of a wire with some type of rubberized coating.  It was annoying  to change bags for a couple of weeks but was worth it.  I had no issues with my stoma with my loop ileo.  I also had an end one as well.  So altogether it was 9 months between both.  No issues with either one.

Permanent stomas don't need rods and aren't looped they are cut and placed through the skin and called end ones as there is a definate end sticking out of the abdomen. 

I should clarify this.  My end had no bridge but my loop did.  I had the end for 6 mos. and the loop for 8 weeks.  My surgeries were done in three steps, unlike many who have it done in two.  

White Mountains are great!  We did a few hikes in May, including Tuckerman's Ravine, one of my first after takedown.  Going up again this weekend, but maybe some smaller hikes.  I also hiked with my end ileo the year before.

I had the 3 step done as well.  When I started with my surgeon (who did my Abdominal reconstruction and then my reversal) was not on board that it was done in 3 steps. 

We have all had our more than fair share of surgeries.  Like somone above said concerning BCIR surgeries not having it meant one surgery and done. It is an individual decision. They are similar as both need to be emptied just one is internal with a valve and the other external with a ileostomy.

Although it is accurate to say that the j pouch removal with an ileostomy is usually done with one operation, the same is true for getting a k pouch or BCIR.   All three of these alternatives have the possibility of future complications and the need for additional surgery.  In deciding which procedure to have, one needs to weigh the benefits of the procedure against the possibility that something could go “wrong” and also consider the quality of life issues of each procedure. For me, the limited chance that problems could occur with my BCIR at a later time (some of which would require additional surgery) was a consideration in my decision, but was outweighed by the benefits I foresaw (and have now fully realized) with a BCIR.  The decision on which procedure to have is definitely a personal one.

I am thinking of getting rid of my pouch also. Have had cuffitis since day one. Meds no longer working. Just makes things worse. But I had reconstruction surgery with hernia repair last year. I'm worried they will run all that work done.

HALO52208,

I had an incisional hernia repair surgery after my j-pouch surgery. My surgeon went through the same incision when she removed my j-pouch and there has been no problems.

Sorry to hear about your cuffitis. That was the major problem with my j-pouch too. 

Small update that feels soo big.... I talked with my doctor, who referred me to another surgeon. Since I'm 12+ years post pouch, it will be a more difficult surgery (with scar tissue and such) but as far as I'm concerned, this pouch is on borrowed time!!!
Funny thing happened when the doctor called. It was about 11:45 and I had this thought, You've only gone to the bathroom 7-8 times since you've been up (mind you, I taught summer school that morning and t didn't count the 3 times I was up at night) 
Who does that? Who in their right mind thinks going to the bathroom 7-8 times before noon is even normal? haha... While talking to my doctor I said, imagine taking laxatives 2x a day and then trying to stop it AND still having to go to work, sporting events, out with friends....hahah...He made the appointment for me with no problem. My initial appointment/consult with the surgeon is Sept 20th and I'm hoping for a December surgery. (Minimal time away from students with winter break and my son is getting married in October)
I'm starting to see a light...at the end of this tunnel and there are far fewer bathroom breaks on the way!!!

Michelle

Congratulations on the decision to remove your sick j-pouch.  You have an excellent attitude and will do very well.  It may be folklore, but I was told to really take it easy during the healing process in order to keep down the scar tissue and adhesions.  Be good to yourself (as much as you can).  Keep us posted. 

Caty