I’m Grateful for Ostomies!
It’s Ostomy Awareness Day
Today is Ostomy Awareness Day, and I agree with the United Ostomy Association of America that ostomies are lifesavers!
There are various reasons why people may need an ostomy, which allows stool and gas to pass through a surgically created stoma on the abdomen. People may need an ostomy if they have conditions like colon or rectal cancer, a bowel blockage, Crohn’s disease, bladder cancer or intestine injuries.
My four-year-old child had emergency surgery on day three of his life to get an ostomy because he was born without an anus, and he had no other way to expel stool. There is a medical account of a surgeon performing this very surgery on a three-day-old baby with imperforate anus in 1793! He lived to be 45 years old. Many others were not so lucky, however, until there were more surgical advances.
Babies with my child’s condition in the present day usually have two more operations by the time they are around 1 years old to create an anus through which they will stool for the rest of their lives with the help of laxatives, a strict diet, and/or enemas. My child had those surgeries and tried those options, but they didn’t work for him.
Last year, we had consults with some of the top colorectal surgeons in the country and they all agreed that an ostomy would be the best step for him to improve his quality of life.
In early March of this year, he had surgery to create an ostomy again. Before then, he experienced pain doing nightly enemas and the process was so ineffective, he had to do two back-to-back flushes, and weekly x-rays still showed he was backed-up. We worked with a top colorectal center for 18 months, trying various enema formulas to try to empty him out. He had major colon surgery and two anal prolapse repairs, and nothing worked.
He ended up having the ostomy surgery before it was scheduled (it was scheduled late due to the high rate of COVID-19 patients who needed resources) because one night his enema process was so ineffective and painful, he vomited and passed out. At the ER, they soon admitted him to the ICU where he stayed for a few days until his surgeon was in town. Then he was admitted to the surgical floor and had surgery to create the ostomy. While the recovery was tough for about six weeks, it’s now six months later and he’s doing great. He is so happy to not be in pain anymore. For him, there were no other good options to allow him to live a good quality of life
We don’t know how long he’ll have an ostomy this time, but we are so grateful for the option.
DONATE SUPPLIES OR MONEY
Many people with ostomies manage it with an ostomy bag and various adhesive removers, stoma powders, and adhesives. Essentially, you need to attach a bag to your abdomen so that stool can flow into it almost continually across the day and night. You must figure out what medical supplies allow you to keep it on best without it leaking. Usually then every few hours, you empty the stool from the bag into the toilet and clean out the bag’s end and close it back up. Every few days — if things work well — you replace the whole bag and adhesives.
When my child was a newborn, we didn’t have the right supplies at first and his body was tiny, and he was healing from surgery right where we had to put on and take off the bag. We struggled every day with managing it. But this time around, the setup often lasts 3 days before we do a complete change. He is learning how to help empty it across the day and his preschool teachers help him when he’s at school.
Medical supplies are really crucial to help people manage their ostomies cleanly and in a healthy way. We can procure medical supplies for our child with insurance, but not everyone can, even though the ostomy supplies can be so important to people’s daily lives and well-being. In some areas where supplies are limited, people must wrap diapers or towels or rags around abdomens and change them hourly. This is time consuming and can create opportunity for infection.
Kindred Box is an organization that collects and distributes people’s extra or unneeded ostomy supplies to people who cannot afford them. They also take monetary donations to help distribute supplies. If you are able, you can make a donation toward this program today! I made a donation today, in honor of Ostomy Awareness Day.
