Thc, I will share what I know and have learned from other “poachers” but you have to promise to run it by your medical team as you have to remember we are not health care professionals. Yes if you are having to catch that often I imagine it is causing wear and tear on your stoma. And I know what the frustration is like when you are leaking. But take a deep breath it takes patience and perseverance but maybe this may hold some of your answers. It is possible your problem maybe that you have either an irritation of the bladder or an over abundance of mucus. I don’t know your specifics or if you already know all of this but I will tell you what I know.
I was diagnosed in ‘04 and had my radical cystectomy in ‘06, I also have an umbilical Indiana. I had my surgery at the University of Chicago Hospital and my Uro is Dr. Gary Stienburg.
Now for the leaking, it can be caused by different things. I know a lady who has had hers for 20 years with no problem unless she eats Chinese food. She figured out over time that it is the MSG if she stays away from it she is fine. Mine can be caused by a few different things as we will talk about. The first I would imagine you have already checked on and that is an infection. Food interactions are probably less likely to be the culprit but it is possible. I have found in the summer if I drink to much lemonade the acidity makes my bladder rebel and leak. Also if you are diabetic high blood sugar can cause leaking so making sure that they are well regulated is important.
Another thing that can cause leaking is mucus. So lets talk about mucus oh joy. When your diversion is new mucus is normal over time it diminishes to only a little when you pouch is happy. It also is almost the perfect medium to grow bacteria so you don’t want an over abundance of mucus staying in the bladder any longer than you have to. I was taught to do was to flush my pouch to break up the mucus and to flush the bladder itself of any possible irritants. See if you can set up an appointment with your doctor for them or their nurse to show you how. Also if you have insurance with a prescription it may pay for your supply’s. It is a simple to do using a irrigation syringe fill with 50cc’s of sterile normal saline, you then insert the tip of the syringe into the funnel end of your catheter and inject the saline into your bladder try to aspirate it back into the syringe if it is not doing so easily just remove the syringe and allow the saline to drain out the catheter. I was told to do this twice a day and once the mucus decreased to do it once a week or as needed.
So this is what I do if I start leaking. If I am leaking every two and a half hours I would back up to every two hours and start flushing my pouch, add time between catheterizing until you are back to normal. I would also make sure that I was eating and drinking things that are none irritating. Pure water is important and the least irritating remember garbage in garbage out. Remember you can have your favorite spicy food once you are on track but once irritated the bladder is not very forgiving.
Not all Uro’s teach pouch training after RC but mine did and this is what I was told to do. Once all the tubes where gone and I was direct to catheterizing, to start at two hours and to add a half hour a week if adding a half hour causing leaking try adding fifteen minutes or less if you have to and do this until you reach three and a half or four hours. This is a long haul but worked well for me and I was continent by the sixth week. I found that having a timer or an Alexa or that type of thing helps a lot especially at night.
I to this day I have outbreaks of what I call pouchitus meaning my pouch is irritated and training, a none irritating diet and retraining is my answer. By the way I am sure you know that finding something to keep you dry with a umbilical Indiana is hard but I have found male pads made by Tena work for me. Have you found anything that works for you?
Hopes this helps and I am here if you want to ask more questions or just to vent.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Thought I'd try this site to see if anyone can give their opinion on what medication to take for bladder spasms with an Indiana Pouch. I leak every 1.5 to 2 hours through my umbilical stoma, and because of that I have to cath every 2 hours or less and that is causing a lot of inflammation & a lot of pain in stoma & canal. Also because of this my pouch still has not stretched at all. I can only hold about 150 ccs of urine. My surgery was April 2019. I should be farther along by now! Does anyone else have these issues?
DX:11.2017, TURBT 11.2017 and 12.2017 to determine stage. (1) Papillary HG. BCG - 6 rounds 2.2018. BC clear 3.2018. BCG- 3 weeks 5.2018. Reoccurrence & TURBT 6.2018. (4) papillary HG & (1) CIS tumor. Cystectomy August 15, 2018 (Neo Bladder) Incontinent /fistula-so had urinary diversion to...