Having IBD is a roller coaster! Between fighting to get out of a flare to a point of remission and balancing life, things can get quite overwhelming. This is when social support is key to helping IBDers get through hard times.
A few times a year, I have the pleasure of being invited to attend medical conferences to expand my own knowledge of IBD. While there, I am able to hang out with fellow advocates. I call them my IBD Family. They all bring something unique to the table and a point of view to look at to help understand my own life struggles with being chronically ill.
It’s hard to find time in between being active at the conferences, self-care and making content together. We often find ourselves hangout together until the crack of dawn trying to catch up with our IBD Family members. We make jokes about how we should just set up a camera and let it record all of the funny things we share with each other. That is when the IBD School Bus idea came about.
The IBD School Bus represents a group of people gathering together to go learn and empower our community. Each member jumps on the bus to travel to obtain more information to help fight stigma and misinformation by providing better tools for a higher quality of life in the society we live in.
Eric from Vegan Ostomy
Stephanie from The Stolen Colon
Kelly from #PurpleProject & kellyontherun.com
Ryan from Crohn’s Guy
Dan from Dan Sharp IBD
Sara from Inflamed & Untamed
Alison from Empowering Patients, LLC
Christy from Crohnie Bologna IBD
Gaylyn from Gutless and Glamorous
Megan from The Great Bowel Movement (behind the camera)
Passing gas is a natural function of the GI tract. Ostomates, however, pass gas a little differently. Instead of being able to control when gas is passed, it just comes out without our control. There are no muscles to control the passageway from the body to the outside. Gas will then collect into the bag. Some ostomy pouches/bags will come with filters to help the gas escape with minimal odor. Sadly, most of the time these filters fail because they get wet from showering/bathing or from output.
Ostomates are then left with a bag full of air with or without output. We may not have the energy or convenience to empty the full bag in a bathroom. This is were burping the bag comes in handy.
Burping is when an ostomate removes gas from the pouch while leaving the output inside. This allows more room for soft or liquid output.
Being an IBDer and having a Pull-Through, I am no stranger to the dreaded raw booty pain.
People who have IBD such as Crohn’s and ulcerative colitis may experience watery output (diarrhea). This can irritate the skin and cause a diaper rash. If the problem is not fixed, it can lead to red weepy skin that could even bleed.
If you have a J-Pouch, then you are at higher risk due to the output being more acidic.
Here is how I fought my raw booty:
Use good quality toilet paper. My favorite is Sam’s Club generic brand. It is strong and soft but does not piece away and leave things behind.
Avoid wipes. Yes sometimes it feels great to have a cleaner feeling, but if the skin is already broken out, it can make it worse. Wipes leave residue behind!
Use a washcloth just with water. I would grab a clean washcloth and dampen it with warm water. Although, this could lead to extra laundry.
Use a bidet. This is the best and quickest way to get that “clean feeling”. Since I’m not made of money and low on resources. I snagged a travel bidet off of Amazon. It’s easy to use with my arthritic hands. I can even get more angles with it compared to a stationed unit. Here is a link: SmarterFresh
Take a bath. I would run a warm bath with some Epson salt with no added fragrance. After I got out, I would either try my best to dry the area carefully with a towel or layout and have it air dry.
Calmoseptine! Next step is some ointment. This will provide a barrier between the output and the skin to protect from further irritation. It even features a nice cooling sensation to help sooth the pain. Here is the Amazon link: Calmoseptine 4oz
Showering with an ostomy might be a piece of cake to some ostomates. Others may find it to cause issues with the appliance and will need to go through extra steps in order to complete the task.
For myself, I need to either apply extra supplies like tape, barrier extenders or a shield that covers the site.
In this video, I make a shield out of Pink Hy-tape and Press’n Seal.
If you are using a pouch that has a filter, it would be a good idea to block it so water does not come into the pouch and clog the filter. Some supply companies will provide you with stickers to place over the filter for a short amount of time. These stickers, however, will not stand up to being fully submerged like taking a bath or going swimming.
Here is a slideshow of my stoma after a revision. The video shows the stoma from a week after surgery in June of 2015 to January 2016. You can see the stoma change color, size, and shape until it fully heals into a textbook end-ileostomy.
Ugh! There is no secret why Prednisone is called “Satan’s Tic Tacs” or the “Devil’s Pill”. It’s a common corticosteroid pill given to people who have IBD due to its fast-acting symptom control. It is a blessing to have but does come with some heavy side effects.
Humor is a great coping mechanism I use a lot. I hope this video puts a smile on some of your faces. We often get thrown into a state of having to be too serious. We are all human and need some relief.