You have a whaaatt???
I feel like I must introduce you to a very important someone in my life. She was the catalyst for this blog. She pushed me to create a community where life is transparent, the hard is not glossed over, and seeing the good is a daily choice. I must introduce you to Passey.
Passey is a spunky piece of small intestine shaped like a ‘J’ living near my rectum. She is called a "J-pouch." She enjoys giving me the chance to live life outside the bathroom and likes starchy foods i.e. bread, pasta, and pastry. She is temperamental, often cantankerous, and is the reason I am a J-poucher.
Let me tell you how we met.
When I was 12, I was diagnosed with Ulcerative Colitis, an Inflammatory Bowel Disease that caused my colon (large intestine) to bleed, have diarrhea and go to the bathroom wherever and whenever it wanted. After a stool (poop) test, an allergic reaction, and a diet adjustment, I was back to normal. No nuts, popcorn, oatmeal, or kernel corn and my life was like any other preteen – dramatic, full of misguided fashion choices, and crushes on juvenile boys.
When I was a senior in high school (6 years later), my medication stopped working, and no other medication on the market was working, either. My colon was NOT happy. I was in so much pain, going to the bathroom 30 times a day, bleeding, wearing adult diapers, taking Calc 2 tests in the bathroom, and hardly able to live life. Two weeks before I graduated, I ended up almost dying and in the hospital. I had two choices. One, wait six months for a medication that probably would not work (if I lived for six months which was a big if) or two, have surgery.
I chose life.
I met Passey in December 2016 after my second of three surgeries. I officially had a J-Pouch! I was so excited. She offered me hope. A chance to do normal. Finish college. Have a life outside the bathroom. We had an instant connection! We got along so well.
I remembered what not running to the bathroom was like. Shopping was fun! I could eat salad again; and wear pretty underwear with lace and patterns and not destroy them. I could sleep through the night. Dresses and skirts were wardrobe options! For the first time in a couple of years, Passey allowed me to feel more like myself. I could live life.
Like any relationship, though, Passey and I were destined for some rough patches. It got complicated around Thanksgiving 2018. I got sick….in the hospital for two weeks sick. Turns out, Passey had not been emptying and my entire system was backed up. It also was causing chronic pouchitis (literally means “inflammation of the pouch”). It explained the blood, the loss of appetite, my blood sugar swings, the pain, the loss of control.
In December, it became clear Passey and I were going to just have a difficult time together. I was diagnosed with pelvic floor dysfunction…my muscles didn’t learn to work with my new GI tract after my surgeries to create Passey.
Passey was defunct.
That is why this blog became a thought. I wanted a community that didn’t sugarcoat the truth – life as a J-poucher is not all glitter and gold. For many of us, there are complications, hard days; life doesn’t return to almost normal. I wanted a place to do hard with people who were willing to do hard with me. Passey was the catalyst.
My normal these days looks like laxatives twice a day, an enema every once in a while, not eating much, trying to stay hydrated, and doing my best to avoid the hospital. When Passey gets mad and my pouchitis flares, I go on antibiotics.
Despite all that (and it is a lot), life with Passey is still good! I still eat salad and popcorn. I still wear my pretty underthings most days. I mostly sleep through the night. I still go to random parks at midnight to play on the swings and barely think about the nearest bathroom.
I’ve learned to make jokes about the noises Passey makes. People close to me smile when they hear her and ask, “Passey?” I embrace the little I eat – I can make one meal stretch to three or four! I’ve learned to walk through the pain, wear grungy clothes when I just can’t and dress up when I have the energy. I choose to focus on the good times with Passey and rejoice in my life.
Now you know.
I have a Passey. My normal is VERY different than yours…and it is VERY good.