J Pouch surgery at an older age

I am 61 years old with a history of FAP. and have recently learned that I must have my rectum removed due to High Grade Dysplasia. My doctor has explained the the risks and benefits of both procedures but  I still cannot decide weather to have a J pouch or a permanent ileostomy. I would like to hear from anyone who has had a J Pouch surgery in their late 50's or early 60's. Please give me both positive and negative results and what your quality of life has been after having the surgery.

Thank you,

Robert

Original Post

I had my surgeries at 61, 3 step process.  My recoveries from surgeries were good and I have had just minimal issues that most j-pouchers experience.  These include butt burn in the beginning (at this point almost 2 years later, not at all), frequent bm's at the beginning but getting progressively better (about 5-6 times a day), low residue diet for a while after surgery (about a month or so) and slowly introducing more food items. Also, some minor issues with leakage and at times emptying the pouch.

Because I had the 3 step, I had 2 different ostomies, an end and a loop-the end was easier and I had it for 7 mos, the loop was a little more challenging but I only had it for eight weeks.  I didn't have any real skin issues, but others have experienced that.  I was glad to get rid of the stoma and be connected at the final surgery.  I had a couple of times that my bag leaked, once at work, not very pleasant.  However, after having experienced the bag, if I had to do it, I could manage.

I walked a lot after surgeries, as soon as I could.  Since then, I have returned to pretty much all activities, including hiking, biking, swimming.  ( Recently hiked to the Summit of Mt.  Washington).

I will caution that everyone does not have the same results, with more difficult recoveries etc.  It is individual and a 60 year old may have better recoveries than a 25 year old or vice versa.  Big thing is to follow your surgeon's instructions and be patient.  It is a long process, but things slowly get better, for most people after the first year.

Big decision to make.  I never considered a permanent ostomy and I was a good candidate for the j-pouch.  Also, had an excellent surgeon.

I will second what CTB23 stated. I also had the 3-step after an emergent subtotal colectomy with end ileostomy. I remained undecided about next steps for about 6 months. I was 62 when I made the decision to continue on with steps 2&3 last year. In my opinion I had one shot at a j-pouch and it was now it never. I did OK with the ileos but the bag always seemed to be in the way, my clothes didn’t fit, I had minor skin issues that were annoying mostly, and changing the wafer/bag was always stressful. So I did my research and then created a T-chart of pros/cons for a permanent Ileostomy vs a j-pouch. I also researched hospitals and surgeons as you want the best for these surgeries—it’s complicated work and you’ll have enough to worry about in recovery so why take a risk on a less experienced doctor? I’ve found this recovery to be the most challenging of the three. I’m a little over 7 months out from take down and am still overly distracted with BMs (up to 10 per day still), managing diet, medications, how long I can go out, what supplies to take, etc. Every day when I leave the house I still carry a panty liner, small plastic bag, baby wipes and a tube of iLex paste. I’m hoping to be a happier camper after a year—sure hope so—as my butt burn, some night-time leakage and frequency is a lot of maintenance and I’m soooo tired of it all, especially after making it through all the surgeries. Would I go for it again after all I’ve been through? Yeah I would, but it would certainly be a whole lot easier if I was already retired. Hang in there and make your own t-chart.

-John

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.  The surgeon at a very well-known medical center gave me a second opinion and would only recommend an ileostomy, which I strongly did not want.  The reason he gave was my age, which was 68. Fortunately I knew of two alternatives that do not require an external bag, and I got a BCIR.  The surgery went very well and I have had no problems with my BCIR (which is similar to a K pouch).  If you are in good physical condition, which I was, age should not prevent having a good result with a J pouch or one of the alternative internal pouches.  Be sure to get a surgeon who has done many of the procedure you decide to have.

Hi Robert,

I am 59. I had my first of three surgeries at 57. My surgeries were done robotically. I had a fistula after my first surgery, which is not uncommon with abdominal surgery. This is  why the longer time period to get through to the last surgery. I like ctb, I had two different stomas. The loop being the most trouble.  I've had a functioning jpouch for about 6 wks, and honestly it hasn't been bad. I did have some inflammation recently, but after a round of antibiotics, that is cleared up. Butt burn maybe once.  Would I do this again? Oh boy, in a heart beat. I could never get comfortable with having a stoma, though many people have.  I know it's a hard decision to make. Three surgeries is alot. Some on this site have done it in one. I think probably that won't happen for someone our age. For me it has been worth it even if it is early days. Good luck to you in whatever you decide. Let us know.

Aimee

I am almost (next month) 78.  I had my first step J-pouch surgery when I was 61 and the second step (takedown) at 62.  I was very reluctant to give up my ileostomy because I had such a good experience with it.  My son convinced me to go ahead or I'd always wonder.  Well, I'm glad I did go ahead.  My J-pouch has been wonderful.  I've had no problems and forget my "plumbing" is atypical!  At my age I do wonder if it would be easier for a caregiver to assist me/clean me if I had an ostomy rather than the J-pouch.  Hopefully, I won't need to think about this for quite some time, if at all!  Best wishes!

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