new BCIR

I also had my BCIR surgery in Florida by Dr. Rehnke and that was almost 3 years ago. For three month post-op, I had concerns about how recovery was progressing and experienced pouchitis, valve leakage and skin irritation around the stoma. I was prescribed 3 different antibiotics and advised to slow down the schedule for timed intubations. I also had two mild bowel obstructions that were resolved in less than one day without medical intervention. After that, everything cleared up and I have had no problems since.

It helps to put plenty of lube on your catheter and gently insert it. If it does not go in fairly quickly, try again a short time later. I would not wait until your pouch is uncomfortably full before emptying it, especially when it is expanding to its ultimate size. Sometimes my catheter is a bit hard to remove and has blood on it, which is not uncommon and not suggestive of a problem. I just relax and twist it a bit to get it to release. Less than two months has passed since your surgery, so I would be patient and give more time for your pouch to mature and your problems to go away. Susan Kay and Gail were very helpful in addressing my concerns. Please send me a PM if you have any questions.

Bill

Pressing,

So sorry that the road is so rocky...sometimes it just takes time to get to know your pouch and how it functions.

I would dial back a bit and go a bit slower...change your diet a bit...maybe cut out the diary prodcuts (high gas producers), the carbs (makes the contents of your pouch thick and pasty and difficult to remove) and up your grape juice or prune juice intake along with your coffee intake (may just be why I am so energetic and hyper)...

You may wish to hook up your tube 24/7 for a few days (up to a week) to help to heal your valve...sometimes they are just a bit more fragile than planned and need extra time to work right...if your lifestyle doesn't allow you to remain hooked up on strait drain they try just doing it at night for a week.

Pouchitis is one of those things that happens and you need to navigate your way through it...it may just ease up on its own after a while (or not)...

For now, the less that you eat the easier that it may be...I stuck to simple proteins like fish and chicken, soups (tomato, veggie (no chunks) or chicken) and lots of fluids.

If your tube hooks going in or coming out you may wish to try to intubate laying down (in the bathtub is good) and see if it helps...

The BCIR is a bit different on the inside than the K pouch but basically functions the same way.

One of my tricks was (and is still today) to only have fluids in the mornings. 

I have water, juice and coffee from the time that I wake up to around 3-4 hrs later...it allows my pouch to completely empty out...once it empties I start slowly with fruits (bananas, berries, soft fruits or smoothies)...then my meals.

It helps me to control the output and gives me freedom in the mornings to not have to worry too much about my pouch....(and tons of energy!)

Not sure if any of this can help you but...

Sharon

my k pouch surgery, at cleveland clinic, was also two months ago and i am climbing the same, steep learning curve.  thanks bill for confiding that you had doubts during the first three months.  i certainly have and all i need to take care of is a cat, not three young kids!  good luck to you.  

given that i am in the same boat as you my best suggestion is to read--and re-read as i have--the many posts on the k pouch korner.  they have been very informative and have helped me cope.  i'll put in my two cents.

the ostomy nurses have been very helpful and it sounds from bill's post that you will find the same resource.  one suggestion they gave me, when i was having problems inserting the catheter, was to stand.  well, fine if you have 24/7 maid service to clean up one's bathroom....  i opted for knelling.  aha, i am slouching over when sitting on toilet, apparently for no better reason than to watch myself insert the tube.  now i sit up very straight, breath from my diaphragm (that sort of breathing did not come naturally for me, but learned through yoga and meditation) and the tube goes in smooth as silk upon the exhale.  i also irrigate almost every time, and some times 3-6 xs if output is thick or there is sludge gunking up the holes.

as for pouchitis, i am so sorry you have it.  i am curious as to how they diagnosed it.  when i had the j--and chronic pouchitis--i found augmentin and levequin (related to cipro) to be the most effective drugs.  my best solution was to totally eliminate refined sugar and sugar substitutes.  however, everybody is different.

hang in there and keep us all posted please.  janet

I tried to reply already....guess it didn't post. Thank you for the advice and encouragement. Went off the Flagyl, per surgeon's office, and in a low FODMAP diet. Have seen tremendous improvement -much less diarrhea and gas. As for intubation, had to wear a Foley 2 days per Susan Kay. It was to hopefully loosen whatever is causing my pouch to not fully open when it's not full. It will always open when it's full, just not other times. Still working on that issue-time will tell.