Terri S., Washington
For more than 35 years, I have dealt with chronic illness and irritable bowel syndrome-constipation (IBS-C) that did not respond to any over-the-counter or prescription medication. After years of testing, I learned that I had total colonic inertia and that my large intestine had essentially shut down.
I had a total colectomy in January 2016, and the surgeon said my colon looked like a boa constrictor inside me that was more than 8 inches in diameter and calcified. It was no wonder I only had a small bowel movement once every 8 to 12 weeks.
The colectomy led to a new issue – bowel incontinence. I spent almost my entire life blocked up, and I now had diarrhea 24 hours a day without notice or warning. My body was chained near a toilet all day and all night. I met with my gastroenterologist, who referred me to a medical team in Seattle. There they did more testing, physical therapy, nutrition counseling, and another endoscopy. It was determined I needed to have an ileostomy, so I had that surgery in January 2017.
I spent two weeks after the surgery in the hospital with complications. The ostomy finally began to work and I went home, where I finally got some sleep. In the past year, I was up and down each night, every 30-60 minutes with diarrhea.
The ostomy team at the hospital sent me home with product samples and arranged for others to arrive once I was home. A week after I was released from the hospital, my output was so high I was up and down just like before surgery emptying my pouch every 30 to 60 minutes. I tried one-piece ostomy systems, but they would blow off my stomach if I fell asleep for more than an hour. I tried 2-piece systems with a high flow collection bag, however, the hose draining to the bag was narrow and difficult to insert into the bag.
My ostomy nurse contacted B. Braun Medical Inc. to see if they had a high flow bag that would support my higher than normal output. B. Braun sent me a sample of the Flexima® Flow Collector (2,000 ml) bag. I then purchased the Flexima 3S drainable pouch system and the Flexima 3S drainable High Output System.
Every night I attach the drainable pouch to the Flow Collector bag, and now I can sleep for more than 60 minutes at a time. I usually get 4 hours of sleep before having to get up and adjust or drain the system. Finally, after 19 months post-colectomy and 7-months post-ileostomy, I am beginning to feel like a functioning person again. Having little to no sleep for the past 19 months impacted my quality of life. I am now able to get some quality sleep without fear of pouches exploding in my bed.