Hello all!!!

I have finally been booked for my k-pouch surgery and was wondering if anyone that has one feels about it? I have been on line looking at everything but, would like to learn more of the pro's and con's regarding this. I am very nervous because of course, the Doc has to give you all the bad side effects as well. Any information you could send me about your good and bad experiences would be greatly appreciated. I was wondering how you know when to empty.....is the k-pouch uncomfortable when it is full? I will just be so happy not to wear the pouch anymore.
Original Post
An advance welcome to the club, ashbre. I have a BCIR, which is similar in construction and function to the K pouch. In a few words, this procedure allows me to have an essentially normal lifestyle. There is no leakage (stool or gas), no odor, and no one knows I have it, even when I wear tight fitting clothes, since I cover the stoma with a thin patch. I can eat almost anything I want (but make sure to chew it well), empty the pouch at my convenience 4-5 times a day and have a completely normal sex life. When out and about, I have a catheter, stoma cover and a small amount of lube with me in case I need to empty the pouch. When you feel “fullness”, similar to a full bladder, you will know it’s time to empty, but there is no urgency to do it right away.

After your surgery, you will be given a time schedule for emptying your pouch, starting with every 2 hours and then increasing it over the next month or so. This allows your pouch to expand to its full size and it is very important to follow it. I had several bouts of pouchitis during my first 3 months and it was controlled by antibiotics. I also had some valve leakage and skin irritation around my stoma during this period, but this has all gone away. Be sure to drink plenty of fluids (about 80 ounces per day) to prevent dehydration and have your feritin (iron) and B-12 levels checked by your PCP regularly. Be sure to post any other questions you have and feel free to send me a PM. RELAX! This is a great procedure and you will be fortunate to have it.

Bill
Hi Ashbre,
Welcome to the club...
Yes, it is a whole new learning curve to have a k pouch and you will learn (very quickly) to recognise the new sensations...I have had mine for 34 yrs and it has been a very exciting trip.
My pouch allowed me to travel (something that I feared that I would never be able to do) around the world, visit and live in places that I would have been impossible when I was sick...now I seem to be going non-stop...
It is a bit intimidating in the begining, this whole new plumbing but it is eaisier to learn than a smartphone!
You will need to have a small 'kit' with you at all times: a tube to empty your pouch, a small packet of lube (one tiny one lasts me weeks...I just open up a corner and use a drop at a time), I carry both a 60cc syringe to irrigate my pouch when needed and a tiny little water bottle with a squirt top to rince it out while in the stall. The whole kit fits into a pencil case plus the water bottle in my purse.
I choose to stay on liquids in the morning because it allows me to clear out my pouch completely...then I eat once it is clear (personal choice and as far as I know, I am the only one who does this)...the rest of the day I am a consultant and professor who runs around the city on public transportation all day long, school to company to home...and I never know when or where I will be...my pouch tells me when it needs emptying and I listen. If I eat a protien meal with some veggies then I am sure that it will only take a minute or 2...if I eat a carb meal (pasta for instance) I know that it will take a couple minutes more because my output will be thicker...you will learn what works for you, how your pouch functions and very quickly you will control you pouch and not the other way around.
I wish you an uneventful journey fill with happy surprises, good health and freedom from pain and suffering.
Keep us posted on what is going on and how you are doing....
Sharon
ashbre,
Sending you well wishes and good vibes as you prepare for your k pouch surgery! You will love it, after you get beyond the first few months when you have to intubate every few hours on schedule. After that you have soooo much freedom! I usually only intubate about 3 times a day. Morning, mid day, and right before bed.
I can't say it enough, I am loving my pouch sooo much, it has given me my life back without the bag!
Hello Rosie, Sharon and Bill,

I have had my surgery and it went well. 6 1/2 hours though and very painful but, the nurses and Doctors were just amazing. Dr. Cohen and his staff were unbelievable. I did have to be re-admitted with an infection and high platelets but, I am still kicking!! It is so odd without my outside pouch. I always expect something to come flying out of my stomach but, I would not change it for the world.
Sharon, I was talking to one of the nurses at Sinia about you and she remembered you. I told her that you were a great inspiration to me and this forum has answers for such great questions. I am having some discomfort such as a constant gas feeling and it is very painful but, I am assuming that will pass in time and I will have to monitor what I eat. I really enjoy dairy but, will eliminate that versus this pain I am having. It also has only been a month so I think my internal pouch is still doing some growing. Thank you all for your help and I am soooo happy that I had this done.
Ashbre, I am happy to learn that your surgery went well and that you are now “bagless”. You will appreciate your new pouch more as time passes by. You are only one month post-op, and it typically takes several months for your pouch to mature and for your internal plumbing to adjust. There are several over-the-counter anti-gas products (like Beano) and prescription medications that your doctor can prescribe for gas. Add new foods one at a time and keep a diary of your results. I found that yogurt went well and was able to add low fat milk and cheese later with no problems. Be sure to chew your food well and drink plenty of fluids, especially during summertime. And be sure to come back to this forum with any questions that you might have.
Bill
Ashbre,
Congratulations and welcome to a very select club...
You are experiencing growing pains and that is normal. Try to keep your diet to a gas-free one that gives you full nutrition without those nasty gas bubbles.
I stuck to chicken, fish, and lean meats plus pureed veggies but you might not want the mushed carrots for a while, they are hard to get rid of...
Drink your prune or grape juice after meals to keep things loose and flowing and add some hot green tea to your diet for extra "liquification".
I avoid all "white flour, rice, pasta, cakes and pastries" because they turned to wallpaper paste in my pouch but required lots of straining to get rid of...and for some reason I got my first blockage from a bagel and cream cheese...so they are off of my list.
I did a lot of fruit smoothies with ice instead of risking chunks of fruit getting caught (if you buy the frozen fruit pieces and berries then you can loose the ice and add juice or water). They make good breakfasts and snacks but do not drink them with meals or you get gas calore...
Thanks for mentioning me to the nurses, they are fantastic and should be elevated to sainthood for everything that they do for us. Dr C too.
Keep posting as you progress and ask any questions that you like. No question is too small or stupid.
Hugs and loads of luck
Sharon

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