I have to empty so often and constantly feel pressure. My stoma nurse said try to hold it to help it grow, but it's hard. When did you reach full capacity? My RD said about a year?
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I don't remember how long it took to get to full capacity. I was given a catheterization schedule and instructed to slowly increasing the times between emptying the pouch to let the reservoir size increase. I was empting about 6 times a day. Then I was emptying around 6-8 times a day depending on how much liquid I drink. Sometimes I've emptied only 5 times. But as long as I feel fine I don't stress about only emptying 5 times. Lately I've been emptying 6 times. So things change. In the beginning I felt some pressure before I emptied especially if I didn't empty right away. Now not so much pressure. Everyone is different and as time passes things will settle and your body will adjust. Try to relax (I know easy to say, hard to do). But stress doesn't help.
Thank you! I really, really, REALLY appreciate you answering all my questions on here. You're so kind!
Hi ReadAnn,
After over 40 years I can honestly say that it is never, ever the same from day to day and month to month.
I recently had dental surgery for my wisdom teeth...a 9-day run on antibiotics.
I am down to 4xs day which has never ever happened to me before!
No urgency or gas. It has been since May and nothing has changed...does that mean that I had low-grade pouchitis? I don't know. I do know that for now, I am enjoying the freedom that not having to intubate 8 or more times a day gives me.
My usual schedule was once upon waking up, after coffee, upon arrival at work (1.5hrs away from home with a wicked teaching schedule of 4hr classes with 1 break so barely any time to take care of my pouch), at lunch, after work before taking the subway home (great paranoid fear of getting trapped in a crowded subway and needing to intubate!) then after dinner and before bed...
So before and after every meal + upon waking and before bed...
Now? I leave home in the mornings and don't intubate again until I leave for home in the evening!
Your pouch will take its on sweet time to mature and find its own normal. I know that food is a problem for you and that you have a very specific and limited diet so that may or may not play a role.
Just be patient...1 year is not a long time for your body to get used to its new anatomy...it had the old one since you were born!
Keep writing and asking questions, there will always be someone who will have an answer.
Sharon
It took me about 2 years to get to my new "normal".