Hi I'm new to this group and am about to get my first surgery for a j-pouch. I already had my colon removed so this is the next step. I have no idea what to expect other than what I saw on the internet and hearing about it from a friend who had the same surgery 15 years ago(and things have changed ince then). Anything anyone can tell me would be appreciated!

Thanks
Hailey

Hailey,

If you use the 'Find' feature on the site, you might be able to search the phrase 'what to expect' and find some good information.

It is typical for the second step after colon removal to be the pouch creation, and then a third step to be the ostomy takedown. I don't know if your surgeon will do both in your next surgery or not - but is something to ask if you don't know already.

For me, the 2nd step (of 3) was better than the first, believe it or not. I was in such bad shape during the 1st step that it was a breeze.

I assume you know the surgeon will actually create the pouch, remove any remaining rectum (less the 1-3 cm needed to attach the pouch), possibly remove the mucosa in the remaining rectum (ask your surgeon), and create the loop ostomy.

The loop ostomy makes it look like you have twin stomas - a 2 headed monster! Ahhhh! No, it wasn't bad at all. The only challenge I had with it over the end ostomy was keeping the skin from minor leaks due to the shape of the stomas and how I had to cut the wafer.

Oh - one of the major differences for me after surgery was due to the fact they bang around on your bladder during this surgery. It is common to wake up with a catheter, butt drain, and NG tube (ask about this - I didn't have the butt drain or NG tube). Also, you may find your incision has been left open to the air to heal. It seems most surgeons do this to help avoid infection. Mine did 3 stitches, and it healed up nicely.

Also, they attach a drain (called a JP drain) that looks just like a grenade on the outside. They squeeze it, and it slowly pulls out any drainage. Interesting - and felt really weird when they pulled the tube out of my belly.

All in all, recovery was not too bad. I'm not sure if you get the zipper cut or not (sternum to pubic area). Mine just used a few holes and a horizontal incision below my waist. Good luck with that

I forgot to mention that it's not uncommon to have draininge out your bottom after surgery (blood, dried blood, and mucous). Drainage may continue up until your takedown.

I am expecting to have my operation in a few weeks, I had my totall collectomy in 1991 for FAP, this is my first time to this site. I have to travel approx 540km to have the surgery, and not knowing what to expect and how to explain things to my 2 kids aged 7 & 10

Hi Hailey and Kam,

Welcome to the site! My daughter has a jpouch, and I'm always on here doing research and because of our experiences, we like to help people in any way that we can. Since you are new to the site and looking for answers, I would recommend going to the jpouch.org homepage and investigating some of the links there. Along with the discussion board, there is a chat room, and illustrated pouch link, IBD links, a discussion from a nurse under "what is a jpouch," dietary guidelines, etc etc.

There are alot of compassionate wonderful people that frequent these boards. There are different forums to use too. The General Discussion would probably get you the most responses to any general questions you may have. You've posted in the Rant and Rave forum, but there is also one for pouchitis, one for women only, an ostomy section and one for family and friends as well as one for kpouch, a poll section, and one for just for laughs. Hope some of this will help you become more acquainted with the jpouch support group and that you'll soon feel at home with everyone here.

Hailey and Kam

I agree with Elmer Fudd. Except my first surgery was diffcult but I am living today with the J pouch. I had first surgery 7-12-07 second J pouch 9-25-07. Three weeks today!!!

My first advise is to have supplies ready when you return home. Water, Ensure, bread, food etc. I had on hand a spray bottle, baby wipes (non fragance) and any creams your doctor suggested. I had 10 boxes of baby wipes on hand and went through them within a month and 1/2. Alot softer on the behind. I bought Depends to the hospital with me and have a supply of them at home. I was not expecting the butt burn. But I am hearing it will go away. I hope!

My incision was open and it healed wonderfully.

I will think of you both and send good energy your way. If you want to talk please feel free to e-mail me.
Take one day at a time.
Helen