Patients: The “Real” Experts


Experts by Experience

I was browsing some Inflammatory Bowel Disease (IBD) support groups this week and stumbled across an interesting question. It wasn’t what the person was asking, but how it was asked. They prefaced it with something along the lines of, “I could ask my doctor, but I want to hear from the real experts. The patients who have experience with this…”

I can’t tell you the number of times I had the same mindset. Sure, doctors know a lot about our guts and diseases, but there’s something more comforting than knowledge: first hand experience. I feel as though the diseases and everything that comes with them are so complex that doctors often fail to inform us of things that could happen. Take my j-pouch surgery for instance…

Why is Stuff Coming Out of My Butt!?

When I was between surgeries, I experienced something unexpected. I had a temporary ostomy and my j-pouch had already been formed. One day, when I went to the toilet to pee, an off-white substance mixed with what appeared to be blood came out of my butt. What the–?! What is that!? Not very settling. I mean, my j-pouch had no access to any food I was eating. Why was it expelling stuff and why was there blood!?

I had an appointment with my surgeon the next week, but I didn’t want to wait until then to ask, so I went to my fellow j-pouch friends. “Guys, please tell me it’s not just me! What’s going on???”

Turns out, it’s not that uncommon for j-pouchers in limbo to pass mucus and a tiny amount of blood. While they couldn’t tell me why it happened*, it was SO nice to know that I wasn’t alone and it really wasn’t a big deal.

Doctors are (Mostly) Awesome

Please don’t misunderstand. I think doctors are awesome and super helpful (most of the time). I mean, they’ve practically saved my life on multiple occasions. But there’s something so nice about having that community of people to turn to who’ve dealt with the problems you’re facing. They may even have tips for you that your doctor could only know about if he/she had experienced it firsthand! And that’s OK!

Again, doctors have the knowledge of how to deal with our health issues. Patients are down in the trenches every day, battling the issues. They know what it’s like to deal with butt burn. The have an intimate understanding of their own guts and how they react to certain things. They’ve spend hours, days, weeks, months, years getting accustomed to life with a chronic illness. Many of them have had to figure things out through trial and error.

When in Doubt, Ask the Experts

In an emergency situation, you should always contact your doctor or visit the local emergency room. But for tips and tricks on how to make your life easier, I would definitely recommend asking the patients directly. Whether it be tips on how to get your ostomy appliance to stick properly, or what brand of TP seems to reduce butt burn, patients know how to deal with stuff. Never underestimate the power of experience.