Hi everyone, thought I would weigh in with long term issues of an Indiana pouch.
1. ENERGY: Like most of you, it took a long tie post-RC to get my energy back. Now, 18 months later, I will say it hasn’t returned quite to 100%, but pretty close, most days.
2. Incontinence/ Leaks: With an Indiana pouch, you have to catheterize through a stoma to drain the pouch. So the system is totally continent, day or night. While my pouch was still new, leaks were common. I think it was from the peristolic contractions of the bowel tissue that would cause urine to squirt (or geyser!) out of my pouch without warning. Thankfully that stopped after about 4 months. Now I do get tiny amounts of mucous coming out of the stoma, but urine leaks are rare.
3. Irregular bowel function: Fibre is no longer my friend. When I eat a lot of raw fruits and vegetables, I will have frequent, loose BMs. Not pleasant, but more, I worry about proper nutrient absorbsion in the bowels if the food is spending only a few hours in my system. In the last few months, I have drastically cut down on my fibre, and the bowel seems to be functioning better.
4. Infection – had almost no post-op infections. But I have had at least 2 UTI’s that were treated with antibiotics and cleared up. I wash and re-use some of my supplies, so that could be the cause.
5. Supplies: I have added this point because with an Indiana pouch, you can’t go anywhere without medical supplies. I need to carry catheters and lubricant with me when I leave the house, in order to be able to drain my pouch. Besides the normal “kit” I carry, I have spare kits in my car, my husband’s car, just in case.
6. Diligence: This is an important one with the pouch (as it would be with having serious allergies, diabetes, etc.) I have to be careful not to let my pouch get too full (more than about 500ml), because the pouch will stretch out and become difficult to drain. This means I need to drain every 3-4 hours during the day and every 5 hrs at night. So now that my kids are finally old enough to sleep through the night, I have to set my alarm to wake up and drain my pouch. In all honesty, this was one of the most difficult obstacles to overcome. My body really needs 6-7 hours of UNINTERRUPTED sleep to function, and that just can’t happen any more. I drink a lot of water throughout the day, and I don’t want to risk the integrity of the pouch – I need it for the next 50 years or so!
Was it all worth it? ABSOLUTELY! If removing my bladder means I get to live cancer-free, it was absolutely worth it.
