Greetings and thanks to you all for sharing your kpouch experiences. I commenced jpouch surgery back in September 2005 here in the UK and from day 1 there were multiple issues including 21 surgical proceedures until jan 3rd 2009, which culminated in my having painful pyoderma and being told i would have to loose the pouch.

I was devestated and by this stage wholly depleted as a result of the care i had received. Here in the UK the kpouch hadnt been done for approximately 25 years, however thanks to the dedication from Janice M I learnt that the top surgeon had recently carried out the proceedure here.

I was ecstatic when he agreed that it could be viable option. The surgery was finally done last December and the level of care i received from the surgeon, who alongside being highly skilled possessed a level of compassion that I had not witnessed before within the allopathic system. The nursing staff did all they could to aid my recovery, it was altogether such a different experience from what i endured with the prior surgeries at a different establishment.

For anybody considering the kpouch here in the UK, i cannot speak highly enough of the level of care.

Apologies for the length of this post, i was hoping that if there was anyone from the UK who was in the desperate situation that I was in, that they are aware that kpouch surgery is being carried out here, although in it's infancy. I was number 4, i think the 2nd person to have the original j pouch modified.

It is early days in recovery, and i have a couple of questions;
Does the wind ease with time as the pouch matures (occasionally have loud farts eminating)
Am stuggling with the thick consitency of stool, despite keeping carbs to a minimum (not including chocolate), drinking prune juice (yuk and that's something considering i downed Tibetan and chinese herbal medicine 3xday for12 years), i drink at least 6 cups of green tea daily - will this change in time?
Can only intubate sitting down, and have difficulty inserting tube when wind present whereby the only way i can get tube in is by lying down.

I guess i am recognizing that it is intubation meditation, in that i have to remain calm and insert gently and hope it goes ok.
Great tips re nursing pads and olive oil as lubricant.

Thanks to all of you, I am now in a state of grace, and have hope for a quality of life that looked unlikely.
Thanks to Janice for all your wonderful research on kpouches, to Jan who responded to my private emails with pertinent medical information and with kindness over a 4 year period, to Shell and Sharon who shared their experiences and to the wonderful Jim E who emails me with fabulous jokes.

All the best to you fellow kpouchers
Dom

HI Dom, welcome to being a kock poucher. The first several months up to a year are the hardest to find what works for you. Its different with every kpoucher.

Avoid gassy foods and too much fiber in the beginning. Gentle Miralax (UK drug Movicol) may help when it's really just too thick. But, irrigation with water is the best way to move it out.

Try different positions to help interbation. You may sit, lean forward or to the side - or take fingers and press on the stomach above the stoma and pull up to make it tight. Use alot of surgical lube, I don't like Olive oil, it makes it too greasy. Yes, breath deep and relax. Don't let it pouch get to full. It can mature slowly. Sometimes interbation is hard when it's really full - the valve gets shut tight.

No gas should be coming out. Sometimes right after you pull out the catheter and the poo is really thick, the valve will not shut tight and you'll get a wisp of gas a few minutes later. But, shouldn't be having gas inbetween interbation.

Be sure to see your surgeon if the gas continues. It's easy to see if it's continent. You just have to insert alot of water using the syringe and then lie down and see if you have gas bubbles or leakage. The valve can be repaired if it healed incorrectly.

Congrats! My dearest Dom and welcome to the club!
How are you feeling???
I agree with Janice that if you are having difficulty intubating then you may just be letting yourself get too full...also is the fart coming when you finally manage to get the tube in?? Like a major backfire?
To keep the stuff liquid I find that if I start my day with a very small glass of prune juice (after 30 years I have learned to love the stuff!), half a glass of orange juice or something similar and then a huge quantity of coffee (try green coffee, it works fine!)...then within the hour my pouch empties out like gangbusters...whoosh!
During the day I keep off of the carbs altoghther and eat protiens (fish, chicken etc) with some blended veggie soups and yoghurt etc...
when I want carbs I have small quantites of whole grain carbs that turn less to wallpaper paste than the white flour stuff that just gums up the works...I only eat my carbs for either a late breakfast or lunch because they are really difficult to get out of me in the middle of the night...takes too long...my evening meal is usually a protien with a green veggie (you can blend them for now) so that I am reasonably empty before bedtime...keep the evening meal light for now so that you can catch up on your sleep!
You can email me if you like...also you may wish to avoid milk product for now..they really do cause a lot of gas..and avoid the leaks, asperegus and any really fiberous stuff..gets stuck in the tube and takes forever to remove...be nice to your pouch in the begining...and it will be nice to you for a very long time
Hugggs
Sharon

My pouch makes noises that sound and feel like like gas is escaping when it is actually just gas and or stool moving around inside.

Thanks all of you for the helpful responses;

Janice the different position suggestions made a difference leaning foreward somewhat.

Had a bit of a mishap whilst in hospital, for some reason the 'tube' (don't know medic term), which was on drainage came out and had to be re-inserted 4 times. Unfortunately the final time day before discharge too much pressure was applied. We were all concerned that the valve had been damadged, i was willing it not to be the case and that it would just take extra time to heal. I mentioned what had happened to the surgeon when i saw him post op appt, and we will review when i see him in 2 weeks. At the moment i get wind coming out occasionally and one time i did have some stool but i think this was due to the fact the pouch was too full. Unlike the jpouch whereby i was in constant pain as soon as stool hit, with the k i don't experience pain.

The surgeon was able to use the jpouch to create the kpouch, so my understanding was that it had probably stretched as had been in use for 2 years, then i had a deferred loop ileo for 13 months before kpouch surgery was performed.

Hoping oh hoping that the valve calms down, its still early days especially if it is bit inlflammed from the hosp insertion.

Sharon thanks for all the great tips, especially the milk, i had been eating bits of cheese which i had been able to tolerate, but will hold off (will email you for chatty update)
Thanks again
Dom

Dom, didn't the surgeon come to see you daily in the hospital? It's ok that the catheter came out and they had to reinsert, but it should have been able to do so easily. If they had to use force, then they should have called in the surgeon. No gas or stool should ever come out - even when full.

It should not be inflammed after all this time.

It could be that you have pouchitis. It would cause some of your symptoms. I'd call the surgeon's office and discuss, he may prescribe some antibiotics to take until your post op appointment.

Hang in there, you're doing great!

Janice, the level of care provided by the surgeon and medical/nursing staff was exceptional, which is the sole reason why i wrote the original post to provide hope for any others from the UK who may be challenged.

For personal reasons i am returning to the state of anonyminity on this site and will be declining from posting further.

Thanks for your interest
wishing everyone well
Dom

Dom, I am sorry, I didn't mean to imply the level of care was not high. As this surgeon is new to kpouches - lessons learned and shared are very important. This surgeon may need to provide more training for the specialized nursing care needed after surgery during the crucial days that follow is all am implying.

I wish you a great recovery and hope you enjoy your kpouch for many many years to come.

I am surprised that the the pouch drain was not stiched in place as tp prevent it coming out. I have a BCIR (same as KOCK) and that is what the surgeon does during the operation. The stich is blue and alerts all personnel that it stays in until the patient is ready to go home.

Ray
Proctocolectomy - 1972
Ileostomy - 1972
BCIR - 2002