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Choose: J-Pouch or Perm Ileostomy

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Posted 5/1/2013 2:14 AM (GMT 0)
Hi,
I am in the process of doing my research for possible surgery. I have UC (since 1998) and have been dealing with a bad flare for the past 24 months. I am reaching my breaking point and so I plan to meet with my surgeon soon. I met with one a month ago when I ended up in the hospital due to bleeding and pneumonia (thanks remicade?). This particular surgeon is a hotshot in Los Angeles who has done something like 10 or 15 thousand J-pouches. He talked to me about the J-pouch and made it seem like a cake-walk.

But I am not so sure. I am leaning towards the permanent end-ileo because, despite the desire to avoid the bag, I feel it is my best chance for a stable situation.

What is my best chance to have the least amount of problems/illnesses?

Please weigh in with your reasons. J-Pouch or Ileo?

Oh god, I just want to EAT again. I want to be able to relax and maybe drink a beer in the evening.

I live in Hawaii and one of the reasons I moved here was to surf, which I used to do every day. Think I can pull that off with an ileo?

Aloha
Dane
Posted 5/1/2013 3:09 AM (GMT 0)
"Think I can pull that off with an ileo? "


why not ?
Posted 5/1/2013 4:07 AM (GMT 0)
I chose a permanent ileostomy because I NEVER EVER wanted to be desperately searching for a bathroom again. It is an extremely personal decision. I have been able to be more active since my surgery than I could ever dream of! I can't think of anything that you wouldn't be able to do with a permanent ileo. I empty it, or simply change the bag at my choosing...and no bathroom is needed, just a little privacy.

I know that there are many who have the J-pouch and they are thrilled with their results. I know many people want to feel as normal as possible, which is absolutely their choice! I didn't want to have any more surgeries and I didn't want to risk that I wouldn't have bowel control with the J-pouch (that was my biggest issue before surgery).

You have to decide what is right for you by gathering as much information as you can. I went into the surgery knowing I never wanted to use that part of my body ever again...and I have been thrilled with my decision.

Good Luck!
Posted 5/1/2013 4:10 AM (GMT 0)
Oh, and the eating has been a DREAM!!! I haven't found anything yet that disagrees with my new anatomy...it is awesome!
Posted 5/1/2013 7:42 AM (GMT 0)
I agree that it is a very personal decision. I based it on my surgron's assessment that I am an ideal j pouch candidate. But I have my temp ileo now and I can do anything I would normally do, so I know if the j pouch doesn't work out, I will be fine. There are many people who are very active with both options - I know when I was researching things, I read stories about people with ostomies running marathons, biking, etc. Same kind of stories with j pouchers. Either option will improve your quality of life, it is just what you want to deal with and how many surgeries you can tolerate.

Good luck.
Posted 5/1/2013 8:23 AM (GMT 0)

Hello Dane1

Cant you have the J-pouch and then choose the ileo if it doesnt work out.

I was diagnosed with UC when I was 19. Was constantly sick apart from about 2-3 months most years. Finally after 15 years decided to get a j-pouch. After this life has been fantastic. Had a few bouts of pouchitis the first 4 years but since then have or was drug free. Could eat anything go anywhere, life was great and no urgency for the dunny.

However just been told I have crohns and now back on medication.

Still though the j-pouch seems to be good and still able to eat and go anywhere. Hopefully this will continue

J-pouch would certainly be my choice. Only great thing about the bag is its great berley for fishing

Good luck

Pottsy

Posted 5/1/2013 12:27 PM (GMT 0)
Both are perfectly good options. Sit down and right a list of pros and cons for each and then measure your lifestyle. For me, a backpacker and long distance hiker, an ostomy was not an option. I've had my jpouch for 12 years and have never regretted it. I eat what I want, travel abroad on long distance hikes, and have total control; urgency is not an issue.

The best choice is the surgery that best suits you!

Sue
Posted 5/1/2013 3:05 PM (GMT 0)
When I decided to have the surgery, I consulted with the Mayo Clinic and with a Colon/Rectal surgeon in Minneapolis who was trained at the University of MN.  They all agreed surgery was necessary.  The Mayo gave the go ahead for a J-Pouch even given my age at the time (age 60), but the Colon/Rectal surgeon advised a perm. ileo because she said the older you are, the more chance of J-Pouch problems and failure.  I had been through 6 years of serious UC and  now was headed for some serious surgery.  What I didn't want was the possibility of a failure down the road that would mean more surgery and recovering so I chose the perm ileo. 

I'm 6 months with the ileo and doing great.  I am a full time gardener, grandmother, and one very busy person.  I got my life back and feel I can do anything I put my mind to.  UC had robbed me of that, but the ****** lost and I came out a winner.

Any decision is a persoanl one, and yes, a difficult one, but you really have to look at it in respect to your own life.

I wish you well.

Posted 5/1/2013 3:23 PM (GMT 0)
I love my j-pouch...and I am not always in search of a bathroom.. I know what my "pattern" is, if you will, I know that after I have eaten, I will need to go in about 30 minutes. Once you get that down pat, it is a breeze!
I like not having to worry about supplies, do I have enough? What if I run out, how easy are they to get? NOT certainly how I wanted to spend my days..

Good luck with whatever decision you make!
Posted 5/1/2013 3:23 PM (GMT 0)
I am a fairly young (34) female, and have had my end ileostomy for exactly 7 weeks now. Despite being VERY sick at the time of surgery, I was a good candidate for a J Pouch, though it would have been 3 surgeries. For me it was a pretty easy decision to just go with the ileostomy and be done with it. It likely would've taken me years to complete all 3 surgeries, just because of insurance/work/money, etc... I couldn't imagine going through all that over and over again for so long. I am a pretty active person, and have no doubt that I will be able to do everything that I did before. I am very happy with my decision, and would be more than happy to answer any questions you have.
Posted 5/1/2013 4:57 PM (GMT 0)
I chose the j pouch mainly because I have two family members that have long time successful j pouches and I was a good candidate for one. I love my j pouch. Aside from a few extra trips to the bathroom, I feel like my old self prior to being diagnosed with UC.

Both have pros and cons and its a very personal decision. A lot depends on your lifestyle as well.
Posted 5/3/2013 7:04 PM (GMT 0)
Both the J and the end ileo can be good options depending on your personal situation. However, if there is any contraindication to a J pouch I would not recommend it.

Another poster said something to the effect "Cant you just try the J and if it doesnt work out go to the end ileo?" The answer is yes but with a huge caveat: it entails several extra surgeries and removal of a J pouch is a tricky difficult surgery with many possible complications. Make your decision but dont include an easy transition from a J pouch to an end ileo as part of your consideration.
Posted 5/6/2013 1:40 PM (GMT 0)
I have end ileo and things are going along great. didn't,t have a choice but what I ended up with works for me.

I agree with everybody else about personal and being sure you are ready.

Good luck with your decision
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