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Hello,

ive been reading this forum for over a year just before my Jpouch surgery last June.  After a year of horrible pouchitis, and incontinence,  my doctors and i have decided that removal of the jpouch with a permanent ileostomy is the best option. 

I have had ulcerative colitis since I was 25. In 2011, I suffered a horrible episode that concluded in an emergency total colectomy, with an ileostomy then waking up in ICU with a breathing tube. So many complications, several blood clots in my leg, a pulmonary embolism, several blood transfusions, many months in the hospital, but thankful to be alive after all of that.

 I lived well for 4 years with the ilesotomy with no limitations and pretty happy.  My gastroenterologist was concerned about the 20 cm of my rectum still intact and the risk of cancer in the future. He thought I would be a good candidate for the jpouch.  I had the surgery again with lots of complications and have been pretty miserable since 

My surgery for removal is scheduled for Nov 1. My doctors haven't told me much about the healing process of this surgery. I got a little concerned when during my Pre-Op appointment the stoma nurse said I would have trouble sitting, and a risk of splitting open of the stitches in my bum.  Can people give me their experiences with this surgery and healing? Any hints tips and advice would be very welcome.

i will add to this when I'm post-op and able sit up and type.

thank you in advance.

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I had it done a year ago.   October 9th 2015.  I was sewn up from the inside.  Didn't even notice it.  No problems afterwards .  Went back to work after 8 weeks.  Could have gone back at 6 weeks but I figured I was off I would take a couple more. 

Don't get me wrong.  It's painful abdominal surgery .  But this one was a breeze compared to the removal of the colon and creation of the pouch.  I had it 26 months and couldn't take it anymore.  Pain.  Dribbles.  Burn!  I was done.  

Go slow.  Ask to be sewn from the inside. If possible.  No outside stitching.  That even sounds painful.  That is one nugget of advice I can give.  

Second is.  It's wonderful on this side.  I didn't know or haven't felt this good in a long time.  

Richard . 

Almost 4 years ago, I had the same surgery that your doctor is recommending (removal of my j pouch), but with a major difference.  I had a BCIR (similar to a k pouch) rather than an ileostomy.  This was a decision I made after researching the available options and was based on my views about quality of life.  I certainly do not want to be critical of Richard’s decision and I am happy that it was the right one for him.  Perhaps your situation would rule out a k pouch or BCIR, but this is something you would want to discuss with your surgeon.  These two alternatives to a conventional ileostomy have a high success rate and patient satisfaction, but are not widely known and are performed by a limited number of surgeons.

In my case, my bottom healed quickly and I felt no pain when sitting by the time I left the hospital. At the time of discharge, I was completely off pain medications.  Recovery took about three months and I was soon able to do all the activities I wanted.  With my BCIR, I do not require an external bag, can eat almost anything I want, have no leakage of gas or stool and I empty my internal pouch with a small plastic catheter, at my convenience, 4-5 times a day.  My stoma is located below my belt line, is flush with my skin and I cover it with a small absorbent dressing.  There is a lot of information about these two options on the internet.  I wish you the best with your upcoming surgery.

Bill

Bill. 

I couldn't mess with it any longer.  My health was going to pot fast.  It was killing me.  A year into this ileo and I am still recovering .  It will take me ten years to get over it and just get back to my old weight.  If I ever do.  I was a bag of bones and it wasn't getting better looking for ways to keep it.  

Yes.  There are other options but I may have carried over my problems to the k pouch or bcir .  I wasn't willing and didn't have the time.  I needed to get upright and get back to work to pay bills and such.  I was going broke. 

That's the story summed up and I'm sticking to it.  Lol. 

Richard . 

thank you so much for both of your replies. But from what I understand pouchitis is still possible with the BCIR.  I researched it but didn't bring it up with my surgeon. Not sure if he would even do it. I have had the ileostomy before and was quite happy with it. I just don't want to take anymore chances with my health. But thank you for reminding me of it.  So glad both of you are doing well.

Jmama posted:

thank you so much for both of your replies. But from what I understand pouchitis is still possible with the BCIR.  I researched it but didn't bring it up with my surgeon. Not sure if he would even do it. I have had the ileostomy before and was quite happy with it. I just don't want to take anymore chances with my health. But thank you for reminding me of it.  So glad both of you are doing well.

The one sentence in your reply sums it up for my experience . 

". I just don't want to take anymore chances with my health. "

Richard 

Well, here I am. 11 days post-op and still in the hospital. The long and short of it is, when my surgeon went in he found wayyyyyy too much inflammation and adhesions, and removing my jpouch would risk my health further and possible other organs inside. So he gave me a loop ileostomy on the left side this time, and closed off the pouch for now. He also found fistulas, which he repaired during the surgery(a scan a few days later confirmed the repair had come undone) so they are hoping it is healing on its own and watching me closely. 

The plan is to either wait and see if the fistulas were causing the problem, and once they are healed close off the ileostomy, or go back to our original plan of removing the pouch and keeping the ileostomy permenant.

I am really disappointed. I was hoping this surgery would be the last. My body doesn't do well with surgeries and there is always complications. I am really disappointed with my GI dr. My surgeon didn't exactly say this but his face revealed that my GI should have seen the complications during the scope before the surgery. He also suspected it may be Crohns, which I had asked my GI previously about and he denied.  I guess at least I won't be in the bathroom 20 times a day now, so that is an improvement.

at least I have a nice window view from my bed.  And should be going home in 3 days if things continue to progress.

Last edited by Jmama

Sorry to hear that.  I don't know what to say.  It sucks I guess.  I was in 11 days and that was a successful removal.  Surgeries are terrible.  I never had a major one until I was 58. 3 in succession.   I was mentally at a point where I gave up but my body wouldn't let me.  Glad it didn't but it went through the worst helI have ever been through.  I hope it all works out for you. 

Richard. 

I've been having trouble logging onto this site and just saw this, jmama. Whew, I remember what was to be my takedown in 2010, waking up and feeling my ostomy bag still there - too much scar tissue, my surgeon said. I couldn't even describe the feeling. Got over that and then five years later, speaking with my surgeon and knowing, before my jpouch removal surgery, the possible complications. Having no idea what the outcome would be. Ups and downs. My thoughts are with you, I just hope that you continue to heal and get what is best for you.

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