Lavenia had her original surgery in 1976 at the M.D. Anderson Cancer Center in Houston. It created both a colostomy and urostomy. In 1990, she had the urostomy converted to a "continent" Indiana Pouch. (The colostomy was also revised in that 1990 surgery, because herniation had developed).
During the 14 years that Lavenia had a conventional urostomy, it was difficult to care for. The bag needed to be emptied every 30-40 minutes, and sometimes the bags broke loose. She had a flush stoma that required convexity, but convex appliances didn't exist yet in 1976 (fortunately, they became available during the latter part of those 14 years).
Now, with her Indiana Pouch, Lavenia has an internal pouch, built from part of her colon, that stores urine. Instead of an external plastic bag, she wears only a small "patch" over her urinary stoma. The patch is needed to catch mucous seepage, but there is no leakage of urine. (The mucous is produced by the colon tissue that the pouch was made from.) The internal pouch needs to be emptied at roughly 4-6 hour inervals. On these occasions, she inserts a catheter through the stoma to drain the urine from the pouch.
Lavenia can tell when the pouch needs emptying by a feeling of "tightness." When catheterizing, she may sometimes use a syringe to start the flow of urine because the catheter can get plugged by mucous. If circumstances prevent her from catheterizing, urine would leak from the stoma, but a one-way valve at the top of the pouch prevents any backflow to the kidneys.
To deal with her Indiana pouch, Lavenia carries with her the catheter, some antibacterial soap, and K-Y jelly to help insert the catheter.
Lavenia's other ostomy (the conventional colostomy) gives her little trouble. She irrigates every other day. The irrigations are relatively quick, and she has little, if any, flow of fecal material in between irrigations. She wears a one-piece, re-usable, closed pouch over her colostomy stoma between irrigations.
For people with conventional urostomies, Lavenia suggests changing appliances first thing in the morning. Don't drink anything before changing it, and dry skin with a blow-dryer. Another tip: to avoid accidents involving night drainage, make a loop in the tube from the urostomy pouch to night drainage bag. While she had her conventional urostomy, Lavenia rotated three appliances: the one she had on, one soaking in vinegar & water, and one hanging, ready to be put on.
Recalling her original surgery in 1976, Lavenia said it was very difficult, involving 45 days in the hospital. The first six months were very rough, as she didn't know another ostomate. She credits her husband Randy who was very supportive during that period. [Lavenia then became one of the founding members of this chapter.]