I've now had mine since Jan, and love it. I've had some pouchitis problems, but am slowly realizing it's from foods I'm eating (i think!). Does sugar or lots of carbs ever affect anyone regarding pouchitis?

It's been a terribly long and hard recovery, and since I'm so small, I still have to empty every 3-4 hours so working long hours is hard to do.

I miss veggies so much, they made up 90% of my meals before surgery! I'm slowly introducing them back into my diet, but it seems to be difficult to intubate afterwards, no matter how much I chew!

So it's frustrating, but I'll deal with all of this a million times over before I ever wear a bag again!!!!!!!!!!!!! I still forget I don't have an appliance and am always looking down to check if it's 'bulging' out of my clothing! Then I smile, and remember I'm BAG-FREE!

to the newbie who said she's crossed things like pasta and bread etc off her diet...
just wait and little by little try again. I found that things i thought i'd have to avoid in the first 10 weeks or so, i have no problems now at all (i'll be 3 years officially at the end of sept). I eat pasta, rice, bread, crackers, chips, bagels, muffins, cous cous, bulgar, every kind of meat out there, EEVVVERRRY kind of cheese, dairy in all forms, coffee and sugar are practically constant. In the beginning I was living on a steady stream of grape juice, but i baaarrrely drink it now. i just try to drink alot of water and other juices (or iced teas, lemonades, etc etc) throughout the day. I'm not GREAT at it, I slack sometimes, but all in all, those parts of my diet are just fine.
Now, of course, i would love to eat salads, etc. but...it's the sacrifice ya make. I knew going in that certain things weren't gonna be "Becca-Friendly" (as my family says) but i guess you never can truly understand and be ready for such a change to be so permanent when you never had to think about things like your diet before
(i was a FAP'er, and never had any colon issues a day in my life before getting diagnosed in '06. so it was def a shocker)

hope things keep moving along...

Just an update and some questions. Had surgery on Aug. 24th and now been home for just a day over a week now. Still adjusting and having some pain issues. Mostly with open incision and also where the cathetar is in starting to hurt around the edges. Did anyone else have a lot of pain from the drain constantly being in. Also still having appetitte problems. Right now taking oxycodone 2 5mg tablets every 4-6 hours. After taking a few bites I get nauseas and can't eat anymore. Anyone else have problems and wondering if they used a different pain medication that they didn't get as nauseated with. Going back to Cleveland on the 24th of September to visit the doctor, can't wait to get the constant drain out.

Hi Mark...you're doing ok...the constant cath does make the stoma sore...it's being irritated..that will go away.

I took tylenol #3, vicodan. Or, Darvocette - is better for nausea.

Once the incision heals..you'll feel better too. I hated mine reopening...

Hey Mark,
I had the same issues with smell, emptying at night and appetite. It was a good 6 weeks after surgery before my appetite started to come back and I lived on tomato or cheesey potato soups much of the time. For the smell in the bag I used either M9 or Adapt by Hollister and both help a great deal. I never did find a good sleeping position as far as emptying goes - I got up every 2-3 hours to walk around and that helped both emptying and gas. For comfort though, I slept on the couch on my side, facing the back of the couch with a pillow between my legs and the top leg propped with my knee against the couch back and the tube hanging behind me. I am a stomach sleeper so sleeping with the tube was difficult - happy to say that one week after the tube was out I was sleeping happily on my tummy again! Good luck and hang in there. Oh, and some of the best advice I have had is to throw the fresh fruits or veggies you are craving in the blender and drink them until you can eat them without problems. I started getting my appetite back and feeling better once I started doing this; I think my body needed those nutrients to get over that hill.

to Nowayout,
you know, good thing you brought this up, I have always been a side sleeper. mostly my left side (i dunno...just seems where I naturally tend towards)
but occasionally I do end up on my stomach. And for the most part in the 3 years having the k so far, while I technically CAN sleep on my stomach as well as flat on my back, I think alot of the time when i lay flat out on my back, my pouch kinda rumbles n bubbles a bit more (obviously not ALL the time) but i've noticed that at times when i'm about to go to bed (and i always empty before getting into bed) i'll feel fine, no pressure, bloating, fullness, rumbles, etc. but if i get in bed and lay on back i rumble or gurgle a little.

thinking about it alot, i came to the conclusion that if standing straight up as normal, if there is still stuff in the pouch, its hanging out below valve level, but if i lay down, it pools back towards where intestine opens into the pouch, and so there's kinda like, empty drain feeling?

lordy, is this making any sense? i realized as I started typing that it sounds kinda convoluted when i try to explain what i mean.

its not a huge deal, most the time its furthest from my mind, but reading your remarks about sleeping with tube in...

(which, btw, I HATED sleeping with the constant drain in. i would sleep on the side closest to the pouch, and right at the edge of the bed. hang the overnight bag off the edge of the bed. I did try sleeping on the opposite side as the pouch/tube and have the tube hang down behind my back and off the edge of bed, but then one night i woke up and i had turned almost all the way around and not only was the tubing beginning to be wound around me, but it also had shifted the elastic belt and faceplate so the part of the catheter that was inside the valve had almost pulled all the way out (i.e. ALMOST leaked crap all over my bed. i'm very very very glad i woke up in time to notice and do damage control.

Just wondering about technique. I actually got admitted to the hospital and am now at the cleveland clinic. I was having fevers and still experiencing quite a bit of nausea. The good news is that I am now on a intubation schedule. I noticed sometimes after intubation I still have some gas or something left in the pouch after I sit back down. Right now I am sitting backwards on the toilet seat. Does anyone have a certain technique that seems to work better, standing, sitting? Just wondering if anyone has any helpful techniques they have discovered over the years.

When I intubate I tend to slide the catheter from as deep as I can insert it to right inside of the valve and then back in again. I do this until I can feel the catheter rubbing on the inside of the pouch. Also I try to use the gas trapped at the top of the pouch to push out stool as I need it if it is a little thick. Fill the catheter with stool from deeper, then move it to the top of the pouch and allow some gas to push it out and again repeat. Only using enough of the gas to clear the cath (not always possible if there is a lot of gas pressure). I can tell when I have hit a pocket of gas when the stool really starts to move out then at that moment insert it further into the pouch. I tend to have thick stools so this helps me to not have to flush as often as I might have to otherwise. Sometimes I will empty and as soon as I stand up I'll feel more gurgle into the pouch and I just get it later when I am full again. I don't know about a BCIR but with a koch pouch there are two "compartments" to the pouch and sometimes you have to wait for stool to move from one compartment to the other. Once you empty one compartment, the pressure decreases making easier for stool to move from one to the other (Pressure wants to equalize so it moves from an area of high pressure to an are of low pressure, sorry I'm taking alot of Chem and bio classes lately). Janice also hinted on the "compartments" of the pouch in an earlier post. Hope this helps!

Here is the thread with an email from Dr. Launer giving a little explanation.

http://j-pouch.org/eve/forums/...31006091/m/793104432

hahahha, i just had this bizzaro thought reading the rest of this thread how it'd be if a bunch of us kpouchers actually met up and were hanging out. i picture some sorta "intubation competition" like all setting up and seeing who can get the most out the fastest.
god i have a warped imagination...okay...carry on...

Hi a few of you are in different stages..how are you all doing?

Hi,

Had my surgery on October 29 with Dr. Launer. He converted my j-pouch to a K-pouch. Despite some post surgical abscesses that have proven to be very stubborn, my pouch is working GREAT. I know that once I kick the infections I will be feeling so much better than I have in years. Even now as the antibiotics are starting to finally work, I feel my freedom coming back.

My next goal is slowly gaining my strength after being down for the count for three years. My K-pouch is making that possible.

Allison..you have done great! I expected nothing less since you had a strong resolve to draw upon.

I'll talk to you offline...keep up the good work.

Hi,

I had my k-pouch surgery almost four months ago and I am soooooo happy. I had colon cancer twice, my colon was removed totally the second time, but my rectum remained. My life was deciding when I could eat, going to the bathroom, taking medicine to try to slow thing down (did not work all the time), and if I could go out. It took me a long time to find this
surgery and only wish I had this option over 20 years ago. No doctor said anything and I did not have the option of a computer! I now can go eight hours, although sometimes less if I have a lot of gas or have to go somewhere, but have gotten my life back...going out to eat, movies (without have to leave in the middle) and just being with friends. I want to thank everyone at "K-Pouch Korner" for being such a big help. I know if I have a problem or questions, somebody has had the experience or like it and will offer advice. I went back and read past postings and that has answered many more questions I didn't think of. WANT TO SAY THANK YOU AGAIN. I feel I found a community and don't have to talk to myself! To everyone who has had recent surgery ask away if you have a problem...you will be answered. Thanks, Judith

I ended up having the surgery on the 8th...Dr Launer had to postpone it. I just got home yesterday. I'm already having medena issues, but I'm confident to have them resolved today with Tara's help.

I'm going to need everyone's support I'm sure. I think I will be just fine with all of this. I did well intubating on my own and I don't really have any pain. The worst thing right now is where they removed the central line...it is really sore. Everything else seems to be on track and I am so blessed to have had Dr. Launer perform the surgery before he retires. I think his last one is today. He's such a great man. He held my hand until I went to sleep...how sweet is that!

Sleeping is difficult with the tube in 24/7 so getting up to irrigate doesn't seem to be a problem. I'm sure when the training comes in I will be exhausted, but I look forward to be free from the tube in all the time.

Great news. It's a grueling process and lack of sleep is the main problem. But, you'll be pleased with the results! How cute Dr L is! He's still going to be at Scripps in his admin role, so we don't loose him completely.