Coping | Information | Ostomy
My name is Nikki and I have Crohn’s Disease. For me, getting a diagnosis was tough. Most doctors thought, “It’s abdominal problems, call Gynecology.” But it wasn’t painful periods, it wasn’t ovarian cysts, and it wasn’t an ectopic pregnancy. It took 6 months of repeat ER visits, and other doctor follow-up visits to finally get the correct diagnosis. The hardest thing for me was not knowing what was wrong. Did I feel sad? Afraid? Angry? Not really. But I felt all those feelings when the doctors didn’t know what was wrong. But finally I had a diagnosis, and a course of treatment in hopes that I would get better, at least for a while.
I was in the Marines when I got sick. I have always been an active person, an avid runner, and someone who likes to “get up and go.” This illness dealt me a huge blow. I lost over 20 pounds, and I wasn’t that big to begin with. When I first got the diagnosis, it was hard to find support from the people around me. I felt like no one understood me. I was physically becoming weaker because of my Crohn’s disease and it got to the point I wasn’t able to train with the rest of my platoon. This left me with feelings of resentment. I found it hard to find people who understood what I was going through, and even though things improved after my diagnosis, I was still sick.
Six months after the diagnosis and meds, the treatments still weren’t working. I ended up getting referred to a surgeon; I needed a bowel resection and fistulatomy. I spent 12 days in the hospital. Despite the long stay, my time in the hospital was a relief – finally, I wasn’t in any pain.After surgery, life improved. However, because of the unpredictability of Crohn’s, I was discharged from the Marines and retired with benefits. My husband and I moved to Wisconsin… and life continued.
Shortly after moving to Wisconsin, I got another fistula – a perianal fistula, and it was bad. I had it repaired with a seton, and though the fistula healed, the sphincter was defective. I was okay for a while and even through all this, my husband and I got pregnant twice, and I have two healthy boys. They are the loves of my life!
Years passed, and I tried many different medications and had a few rectal dilations. But things just didn’t function well in the nether region. My colonoscopies showed no active Crohn’s, but the results of Crohn’s were ruining my life. I practically lived in the bathroom. I couldn’t go anywhere without having to stop for a bathroom break. Control of my anal sphincter was gone. I had waited as long as I could but I needed another resection and ostomy surgery.
Fast forward to now.
I’ve had a stoma for two years now and I have a colostomy; I still have my transverse colon remaining. In the beginning there were good days and bad. Adjusting to bag changes, skin conditions, adhesives, wafers, even figuring out how to empty your bag without the contents splashing everywhere was a new experience.
I’ve learned that everyone’s skin, stoma, belly, and stoma positions are is different. I tried a few different brands of pouching systems. The tape on some irritated my skin something fierce. Finally, I tried Coloplast SenSura Xpro Convex Light Extended Wear 2 piece Click. Oh my goodness! They feel great on my skin, easy to apply and take off, and they stay on very well- even when I am active! I play ice hockey, I am a goalie; and Coloplast works wonders for me! I have even worn the same wafer and bag for 4 games in one weekend. Granted, by the 4th game it was starting to peel off, but it held until I could get home and change it.
As someone who stays active, both on and off the ice rink, I love Coloplast. I can play hockey, take my kids to the park, and spend time with my hubby. Having an ostomy is part of my life, but I will never let it hold me back!
Interested in trying free samples of Coloplast ostomy products? Click here.