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A few questions about a J Pouch

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Ulcerative Colitis
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Posted 4/30/2011 7:22 PM (GMT 0)
So I haven't been to this forum in over a year, and things haven't really improved since then. I'm 18, turning 19 in August and I've lived with UC for 3 years now. I can truly feel my life getting away from me and nothing is really helping, from Asacol to Remicade to everything in between. Yesterday my doctor brought up the name of a surgeon he wanted me to meet with and discuss the possibilities of surgery, which is actually what I've been wanting to do to handle this for a over a year now.

I have a few questions if anyone who has gone through with the surgery could be kind enough to answer.

How long was the time between scheduling the surgery and the actual surgery?

What did you have to do to prepare for the surgery?

What was life like for the first few weeks/months after the surgery?

What is your life like now, assuming a year or so has passed?


Thank you for reading.
Posted 4/30/2011 8:10 PM (GMT 0)
Hey Rob -

There are a few people who post here that have a j-pouch but many more people on j-pouch.org and on the ostomy board here on HW:
https://www.healingwell.com/community/default.aspx?f=33

I have seen a lot of people with j-pouches post and it seems the majorty of people wish they had done it sooner. Of course, there is the random person who had surgery and ended up having a misdiagnosis and they have Chron's or developed Chron's after surgery. It is very rare but possible. I believe with a pouch, most people go 4-10x a day but it's not urgent and it's much faster and easier than a normal poop. They say they just empty when they pee. I think 10x is a lot but I guess if I am in the bathroom peeing, it's not a big deal to empty and much better than living with UC, especially uncontrolled UC. It would also be a blessing to get off all of the medications.

Usually people have a 2step surgical procedure. The 1st step is to remove the colon. After this step you will wake up with an ilestomy which is a stoma and a bag. After 2-3 months, when you're healed, you schedule your 2nd step which is reconnecting to the anus so you can use the bathroom normally and eliminate the bag. It is a big procedure but I've heard it's much easier to heal when you're younger :)

I wish you all the best in healing.

Posted 4/30/2011 9:06 PM (GMT 0)
Notsosicklygirl is right about everything that was said. Here's my personal experience. A year ago I would have never imagined having the surgery, but ending up in the hospital from Imuran and then 6mp affecting my liver left me saying enough is enough. I found the best surgeon within driving distance at one of the best hospitals in the country for j-pouch (Cleveland Clinic). In January I had step 1. I went back to work substitute teaching after 6 weeks. They were pretty rough. It is definately major surgery. At first I would have to take a 2 hour nap after just showering. I had the temp ileostomy for 3 months exactly. I was going to wait for summer break, but I really never got used to the ostomy and wanted it done with. One thing you have to be prepared for, something could go wrong or they could find out that you have Chrons then you have to have a permanent ileostomy. Make sure you are tested to make sure you don't have Chrons.

April 4th I had step two (take down). It was SO much easier. Immediately I was only going about 6-8 times a day and basically when I had to pee. There really isn't any urgency. I did have pain and cramps and pressure in my rear (and butt burn), but that is getting better (4 weeks on Monday). I try to remember to go before I leave the house, but often I forget and it isn't a problem. To say that I am happy with the j-pouch is a huge understatement. I have been very lucky (I am sure because I had such an incredible surgeon) and haven't had any complications. I figure if I go 6 times a day now, I am sure in a year I will be going much less than that. Biggest piece of advice, find out as much as you can about the surgery and ostomies and get a surgeon who has done hundreds if not thousands of successful j-pouch surgeries. This is not the kind of surgery you can go to the local hospital for. Even if you GI suggests someone to you (like mine did and I declined), make sure you do a lot of research. If you go to j-pouch.org you can ask about surgeons in your area. Good luck. I hope the surgery is as successful for you as it has been for me if that's the way you decide to go.

I waited for a few months after I scheduled surgery (for insurance purposes I wanted to have both surgeries in the same year).

Prep--just your usual prep you do for a colonoscopy.  I was in hospital for 5 days for step 1 and 3 days for step 2.

Posted 5/1/2011 4:53 AM (GMT 0)
i have a permanent ileo, so i can't answer the jpouch questions, but i can give you a bit of info about the bag you'll have for a few months, and how surgery is.

after i made my appt with the surgeon it was like 3 weeks or a month, usually its like 2 weeks, but my surgeon was going on vacation so i wanted to wait.

recovery from the first surgery is hard, and it hurts but the disease is gone, and that's all that matters!

like disneynutt said, you do have to be prepared for the fact that you may have a perm ileo, you could have crohns and there are (rare) times that the pouch just doesn't function correctly for people and they end up going back to a bag.  do not let the fear of having a bag keep you from getting a jpouch! i chose a perm ileo, that was what i thought was best for me.  i was 21 when i got sick and i wish i hadn't wasted my 20s on this stupid disease, i wish i had taken control and gotten my colon out and beaten UC, that i had gotten my life back!  but it's ok, i got my bag at 29 and it's been awesome since, i had my 4 year "new bday" (i call it that because the day i had surgery is the day i got my life back) april 17th and while i have had the occasionaly, eek what did i do, 99.99999 percent of the time i am so super happy with my choice. 

to prepare for surgery is like a scope prep, but it's easier to get through cause you know you never have to do it again!

since you will have a bag for 2-3 months, i can tell you its a learning curve, but once you figure it out, its not a big deal, noone will know it's thereunless you tell them.  just be sure you get a good surgeon and a good marking.

after the second surgery i can't comment, but the important thing, regardless of the surgery is the disease is GONE,, you win!  the UC is gone, the drugs are gone, the missing times with friends, or missing work, or not feeling like playing a sport,, or whatever you like to do, all that is gone, and you get your life, the way you want it back.

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