I had the BCIR procedure done April 26th. The past few weeks, I have had alot more gas and abdominal cramps and pain from it. I know it is normal to feel the "growing pains" from the pouch stretching and from the gas and it should get better with time, but I am interested in how you all dealt with the uncomfortableness in the meantime. I am supposed to be able to go 6 hours between intubating now, but I am lucky to go 4..last week when I tried getting to 5 hours is when the pains seemed to peak.

I do have a prescription for Bentyl I am currently taking to help with the gas. Sometimes it helps, other times it seems not to do a whole lot.

Do you all stop eating after a certain hour to help with sleeping through the night? I have been trying different things, but I still get up during the night and empty the pouch due to being woke up from the pain, and then I sleep the best from early morning to late morning (I'm assuming its because the pouch is empty by then). Sometimes I can get 6 hours during this time frame others I'm still awaken every 2-3 hours - can't figured out a reasoning for it...even when I eat the same foods 2 days in a row to see if that is why there is a difference the time between intubations isn't the same.

Well any ideas on how you handled the gas and growing pains when your pouches were new would be greatly appreciated!!

Thanks, Becky

It could be very mild case of pouchitis. I just had a valve revision and am haveing the same problem. Cypro seems to take care of the problem in about 6 hrs. I sleep through the night and am back to 4,41/2 hours between intubation.Ask your Doc.

Hi Becky,
First off, gas, bloating and cramping/urgency can be related to foods like milk products or artichokes or any number of other gas producing foods so you might want to keep a food journal going to check out what stuff bothers your system most (we are all different..i react to soya too!)
Second, yes...I have to cut off the meal time at least 4-5 hours before bed time...usually my hubby comes home after 8:30 pm which is just too late for me to eat so I snack at 6pm and then pretend to eat with him or just have a veggie or piece of meat..if I do eat after 8:30pm then I have to push bedtime to 1am or later..if not I am up most of the night..and even then depending on what I eat most nights I wake up around 3am to empty just once...and am good to go until 8am...
When my pouch (George!) is irritable then I have to intubate very frequently like last week in Spain I caught a bug from Air Franc's dinner and had to intubate every 15mins for 48hrs! Not fun, tons of urgency, gas etc but once it is over with I go back to 3xs in the morning and then once before each meal and once after...and once before bedtime...normal for me is 8xs a day..not too bad and if you are not a big eater then 6 should work just fine..
I find that gassex or beano help in case of big gas output or for really dangerous meals...
Also it is not just what you eat but when and in what combination...I can now eat my fruits but only on an empty stomach..mornings, late afternoon or just before dinner...never after or I get too gassy and it does not digest...carbs like bread and potatoes go best at lunch because they are heavier when digested and more pasty (more work to get out of pouch) so I eat protiens for dinner with a veggie or soups...easy digestion, little gas and they slip through the tube easier (for those midnight intubations when I am half asleep!)..it is all trial and error...and even then you never know...I can eat yoghurt but not milk, hard cheese but not full fat (really mean gas bubbles!)...
Keep a diary and if you need more help we are here..
Sharon

Thanks for the replies. I did start Cipro on Friday evening - so far it really hasn't made a difference, but its only been 3 doses so time will tell.

I had been keeping track of what I eat and haven't really varied it much, but never thought about the order I ate the items in making a difference, so I will watch that also.

Thanks for your advice, I know this will be a learning experience!! I did intubate in public for the first time today, it wasn't nearly as bad as I had predicted. Until today I made sure I didn't go too far from home so I could come back and empty my pouch here where I am most comfortable - another new experience done!!

Any other ideas would be greatly appreciated!! Heating pads, stretching out in bed, seem to help some...and the Bentyl at times.

Keep you posted!
Becky

Hi Becky,
Just a little trick that I am in love with..I stole one of my grandkids water bottles with a nipple tip...any brand is fine, just test the tip for size.. I keep it empty in my bag at all times and fill it just before going into public stalls to do my thing.
It doubles as a tube rincer and an irrigating divice if I am not too clogged. I can also rince the skin if it is irritated.
When going somewhere really unknown I just keep it filled up. Saves on bathroom stress of not knowing if I will be able to rince the tube out or flush out clogs.
Made my recent trip to Spain a snap even with pouchitis.
I keep spare cut up minipads in my purse, wetwipes and a nice folded up paper napkins from a fast food place (just in case there is no paper!)...
Going out in public is always a minor stress when it is new and even later in life so if you are well equipped it cuts down on most of the stress...some people carry ziploc bags for dirty tubes. I carry mini packets of lube that I only slightly open and squeeze a minimum out of..can use one for a week with no problem.
When doing out of town trips I carry a small bag (courrier bag?) with tons of pockets. Travel pouch equipment in 1, pads in 2, bottle in 3 etc...never take it off of me (you can use a fanny pack too, I did for years until my fanny got too big )...carry my purse seperately with a double of everything (yes, I am super paranoid!)..but I travel better that way.
Keep asking questions...we are here to answer.
Sharon

Sharon, what's it like to empty in an airplane? I'm going to Maui, HI in August (combined 8 hours in the air)and i've not tried it yet. I'm a little nerve about it. Do you have any tricks up your sleeve, you seem to know a lot about all of this! I guess it's because you have been doing it for years! Anybody else have any information would be greatly appprecied! Lynda

Lg,
Like I said, my mini water bottle with the nipple tip is my very best friend..I even keep extra tops in my purse that I can screw onto any other standard water bottle for extra if I need it....airplane sinks are really tiny and often clogged up so those mini bottle come in handy because it is impossible to get the syringe under the tap...that courrier purse/bag is very flat and unisex so I never, ever take it off other than when going through airport control...that way it is the only thing that i have to take into the bathroom with me...those bathroom paper towels are really absorbant and make great stoma cover pads too ! I swipe a few for the trip...
I genreally wear either a wide skirt (easy to flip up for quick intubations ..kilts work too for the boys!) or comfortable cargo pants with an extra pad on incase I can't get in to change as often as I would like.
Never, ever intubate during turbulents!!!!!! EVER. Wait. Wait longer if you must but I litterally ripped my valve during a really rought flight.
I tend to travel better if I have been on low residue for 24hrs prior. I stick to chicken/fish and things like cucumbers and tomatoes the night before. No bread or cake or heavy carbs...too much stuff in me feels too dangerous if I am stuck somewhere where I cannot intubate for a long time.
I also always take the aile seat and drink tons of liquids during the flight. Keeps my body hydrated and my pouch nice and liquid. Avoid milk products around travel time..too much gas.
Be the first in after take off and make sure you intubate just before landing...There are times that you end up waiting for hours in the plane and for luggage with no availible bathroom in site...
Avoid pinapple at all costs during you stay unless it is blended! I spent a 3 week honeymoon in Hawaii picking pineapple out of my tube!
Don't for get to have fun!
Sharon

Sharon, Thanks for the reply! One of my biggest concerns is not being able to intubate while on the plane. Some times the only way I finally get it in is if I lay down and that's not possible in the tiny airplane bathroom. I did get the bottles you told my about. I've used it once and it works great for when the bathroom is crowded and you don't want to walk out and rinse you tube in the sink in front of everyone! How embarrasing! Thanks for the information on the 24 hr. diet before flying, I would have never known!Thanks, Lynda

just want to add....
I find it more comfortable to empty my pouch in the bathroom terminal before boarding. The stalls are bigger.
I always bring drinking water into the airplane bathrooms when I empty my pouch.I am under the impression that the water in the bathroom is not for drinking therefore we shouldn't irrigate with it.
Sharon, I wasn't sure from you post if you used bottled water or the water from the sink. I know that you are very careful

When I travel, I also try to empty prior to boarding.

Regarding rinsing in public, if I do not have a water bottle avail, after I remove my cath, I tap it along the side of the toilet to get as much poo out as I can then wrap it in seat liner and put it in my zip lock bag. If I need to reuse it again before I have rinsed it out, it's no big deal. I've been doing this for 30 years. I only rinse when at home or have a private setting.

Thanks Lesrich and Janice! I'm so glad I have people to talk to that are going thru the same thing. Also you guys know so much since you have been doing this so long! Thanks again, LG