Good News.

Glad to hear you are doing well. It's nice to have done of the people with more successful outcomes on here too I think.  It's important people know it's not necessarily all doom and gloom so they can make informed decisions.

Thanks for checking in! Isn't wonderful when you can forget you have a j-pouch? That's how it's been for me since I've been on Remicade. 

I'm sure there are still bumps in the road ahead (not getting any younger), but my pouch life is good too.

Jan

Yes.  I definitely have forgotten I have a j-pouch, and thanks for all your guidance through the years, Jan!  

Lol I wouldn't go as far as too say I ever forget I have a pouch,  but I do eat and drink everything without restriction, im currently on a long haul holiday Inn the Caribbean and have just done A 2 tank scuba dive with no issues.   

Thanks for reminding us who are living well with our pouches to speak up and give hope that it gets better. The difference of my life before the pouch and after are like the difference of a horror movie and a light comedy. Sometimes things get a little wacky, but are easily managed. Where before there was pain and the constant attack from the humiliating, stinky and hopeless darkness of Ulcerative colitis. 

Bringing a tube of butt cream and my anti diarhea Rx on trips is equal to bringing the right equipment to not get sunburned at the beach. Just taking care of the body I have so I can enjoy my life. 

Glad to hear about the successes you all are having. We truly are blessed to have this option. 

Congratulations! It is nice to hear such good news and it is helpful for new j-pouchers as well.

Good to hear Knuckle. I too was a redo patient of Remzi. For the most part I am doing well. I still wear a small pad cuz I do have very small leakage sometimes but nothing more than a spot. I have had my share of cramping my pants in middle of night. I sometimes tend to eat late and a sleep deep but that's my fault. I get a lot of loud growling that is sometimes embarrassing but overall I've been ok. 

Just chipping in to say that I have had my j-pouch for exactly one year (to the day!), and things have been great so far. Averaging four BMs a day, sleep through the night, eat and drink with no restrictions, and able to do everything I was doing pre-illness.

There are plenty of days where I pretty much forget I have a j-pouch - especially when life gets busy.

Wonderful news...how wonderful!

Sharon

You guys are the best.   After I had issues with leakage, I can truly say it's nice to fart -- evidence of the pouch being nicely sealed! 

I fart like a champ on the toilet but due to my slight leakage sometimes I don't dare try it off the toilet..it sucks but it could be worse.

I wanted to update. I am doing very, very well.  The possible only updates to my original post MANY years ago (I forgot how long it's been!) is I no longer wear any type of pad for leakage.  I'm pretty active (now 62 Y/O).  I would say I'm normal, but go to the BR a few more times a day and, maybe the biggest issue I have is all the noise my stomach makes lying in bed at night after I sneak a late bite to eat!  I only wish you all the very best.  I am a very lucky guy.    (Recap, three different ileostomies, lots of corrective surgeries and final redo by Dr. Remzi with great success!)   Sorry for not posting more!

Wonderful news!!! And very reassuring!

Keep up the good work!

Sharon

@aka KNKLHEAD posted:

I wanted to update. I am doing very, very well.  The possible only updates to my original post MANY years ago (I forgot how long it's been!) is I no longer wear any type of pad for leakage.  I'm pretty active (now 62 Y/O).  I would say I'm normal, but go to the BR a few more times a day and, maybe the biggest issue I have is all the noise my stomach makes lying in bed at night after I sneak a late bite to eat!  I only wish you all the very best.  I am a very lucky guy.    (Recap, three different ileostomies, lots of corrective surgeries and final redo by Dr. Remzi with great success!)   Sorry for not posting more!

what did you find that helped with the leakage? Remzi did my redo 6 years ago and i still have it randomly. I always wear a pad just in case

Very happy for you.

I have a ileostomy. Had this done end of September. Trying to decide to keep it or get a j-pouch. What advice can you give me?

Cindy R I love that I have a J-Pouch. I think is is totally a personal preference.  Some people have a great life with a with an ileostomy

I don’t really like having a ileostomy. I’m worried about issues with the j-pouch. How long did it take to recover? How many times do you go in a day? What about pain and accidents. What makes you love it?

@Cindy R posted:

I have a ileostomy. Had this done end of September. Trying to decide to keep it or get a j-pouch. What advice can you give me?

This has been discussed a lot here over the years. I searched for my own posts with the words “satisfaction” and “ileostomy” and found several. This link (if it works properly) will bring up those posts: https://www.j-pouch.org/advanc...agination.sort=SCORE

https://www.j-pouch.org/topic/...6#703331641438715786
Cindy R I love not having to deal with the bag. I usually go to the BR 4 times a day. I can go long periods of time without using the BR.  I feel more natural. The only thing I don’t like about having a J-Pouch is dealing with butt burn. It was pretty bad in the beginning but now only have it occasionally. There are creams to help with that. The recovery wasn’t bad really but I had a 3 step surgery. First, Removal of My colon and the stoma made. Second, a few months later J-Pouch was made.  Third, a month or two later J-Pouch was connected. I am fairly active for a “slightly senior woman” lol. I golf, kayak,hike,and am thinking about trying out Pickleball.

How long did it take after surgery to get down to four times a day? How many times did you go at first?I have two more to go if I go to the j-pouch. Do you have to rush to get to the bathroom?

It takes a while  to adjust after surgery, but for most folks urgency just isn’t a factor when the pouch is healthy. I went back to my not-very-physical work after six weeks, and I had a substantial surgery (1 stage, opened up from ribs to pubic bone).

@Cindy R posted:

I don’t really like having a ileostomy. I’m worried about issues with the j-pouch. How long did it take to recover? How many times do you go in a day? What about pain and accidents. What makes you love it?

I can only speak for myself but I got my J Pouch in 1992, non laparoscopic, 2 steps. Like Scott, step 1 was a cut from ribs to pubic bone and I have a long scar to prove it. I had many complications including ileus, infection, and then yeast infections due to the temporary ileostomy which was something of a nightmare for the 3 months I had it before step 2 (mainly couldn't get a seal, and constant leakage leading to the aforementioned yeast infections).

I eventually recovered from the surgery and although I have battled chronic pouchitis, I have worked for 30 plus years with a J Pouch as a trial attorney and am now closing in on 60. My quality of life is very good, albeit with treatment which is Remicade and low dosage antibiotics.

Although it was a road that wasn't without some bumps, I have no regrets at all about having had J Pouch surgery.

I would estimate 4-7 bowel movements daily - much depends on staying on top of treatment, limiting sugar and carbs etc. Everyone has to adjust to the J Pouch they have and figure out a diet and regimen that works for them.

Hello,

also speaking only for myself, I hated all 13 weeks of my temp loop ileostomy.

I have overall regrets with embarking on the process due to surgical complications.

I am now 18 months post op and i am glad that everything is behind me now. Time heals!

i go 6 times per day. Once I figured out how my pouch works, I was able to adjust and I have a decent quality of life.

IMHO, the pouch is a mediocre solution to a very complex problem. it is what is is.

My daily affirmation is as follows:

I am alive

i don’t have a bag

I will never get colon cancer.

https://www.j-pouch.org/topic/...2#703331641654213452 Cindy R I don’t remember how long it took honestly. I don’t have to run to the bathroom unless I have put it off for a long time. Pretty much have control. Some days I may go 6 times.

https://www.j-pouch.org/topic/...1#703753854159755761
The temp Loop ileostomy was the worst part. I had problems with that.