Ford, sorry you are having problems. I have an Indiana myself it was born in 2006. I had the opposite problem from yours mine was so tight there were times I couldn’t get the catheter in. I had to have a surgery and they did a procedure loosening it. Leaving me with an Indiana that will leak if too full or if I have pouchitus. Over time I have learnt to deal. Before we go any further what ever I say here talk to your medical team about, after all I am not a doctor I’m just a crazy lady on the internet. Since you did not tell me if you had tried anything to alleviate your leaking I will tell you what I do if I am leaking like a sieve.
If I start leaking it is usually from pouchitus. That is a catch all phrase that means your pouch is irritated for some reason. This is just an opinion and I know of no other source but my own observation. Anything that would upset my intestinal track can upset my pouch. Mucus build up can also be a reason. There are other times but rare when I can find no reason. Most often it is probably a number of things so if I have a problem I go back to the basics.
One of the things you can do for your pouch when it is irritated is to irrigate it. While the cathatur is inserted you insert the tip of an irrigation syringe into the funnel end and inject about 50cc’s of normal saline and let it drain out or have you doctor teach you how to draw back on the syringe to pull it back out. I do this once a day while the pouch is upset and once a week otherwise. If this is something your doctor wants you to do they will need to give you a persiription for disposable syringes and the saline solution.
Watch what you eat. If you are hitting the lemons and the vinegar or broccoli or what ever you triggers are cut back on it. Acidic things and anything that might cause digestion problems are a good place to look. I know a woman who has had her pouch for over 20 years and if she gets into MSG she will leak like a hose. So what bothers you might be different from someone else.
If all else fails I go back to the beginning and retrain it. When I left the doctors office with my catheters they also gave me instructions for training my pouch. At first I had an indweling cathather and would clamp it and then drain it. Then the cathater was removed and I finished training it by direct cathing. The way I was instructed to do it was to catheterize ever two hours for the first week week then add a half hour a week until you reached 4hrs. If you get to the say 4hour mark for example and find that you leak consistently at 3.30hrs go back to 3:15 for a week and work forward in 15min increments. The idea is to stretch the bag by adding volume a little at a time. If you have a indwelling cathater talk to your doctor about clamping the catheter for say an hour and then work up in 15 min increments. I know my safe zone depending on my fluid intake is about 31/4 to 31/2 so I try to catheterize about every 3hrs.
I use a few thing that have been a big help to me I am not endorsing any one model or make, I use a Alexa Dot she is the least expensive and it is great to be able to just verbally tell her to set a timer for every two hours during the night, I also have been told that an Apple Watch or a model that can set a timer would do. Also the only thing I have found that works as a pad to catch urine from an Indiana is made by Tenna and are called male guards, if you know of others let me know.
I have no idea if any of this might help you I know what works for me but again crazy lady on the internet. Talk to your doctor if there is anything new to you here. I know how frustrating leakage is I am sure we could trade stories but I have “for the most part” made peace with my pouch using these methods. I am sure I could go back and have another surgery to try to adjust it but I no longer do elective surgery on general principle so I decided ok was good.
And if you just need to talk I am here.
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
If anyone has this system, I need help! I was operated on for T4 Bladder/prostate cancer in Sept ‘18 and fitted with an Indiana Pouch type system. Since then I have had little success with countenance as the valve located within my navel leaks constantly. I learned to use a silicone type bandage to try to hold the flow for an hour or two before catheterizing myself. But with no lengthy protection I had no freedom and was becoming a zombie from sleep deprivation! My surgeon just installed a (temporary) Foley catheter with a leg bag which has brought some relief. Has anyone else had this type of failure of the continent valve system? I need to talk to someone.