Expectations

With anything in life, it's important to set proper expectations. It's especially important for those of us living with Inflammatory Bowel Disease. Because our disease has no cure, it's important that we understand what exactly it is that our medications, treatments, surgeries, diets, etc. will (and will not) do for us.

Expectations with my j-pouch

I'll use my J-pouch as an example. Many people think getting your colon removed will cure you of Inflammatory Bowel Disease. People often think this because the proper expectations were not set by their physician or surgeon. Although IBD has many treatment options, especially so over the last 10 - 20 years or so, there's still no way to "cure yourself" of the disease. My surgeon and gastroenterologist did a decent job of explaining this to me. Probably my surgeon more than anyone.

It's nice to remain positive and hopeful, but it's also important to understand things like risks, side effects, and life changes that come along with the medications and treatments we try. For example, with my J-pouch, although my urgency is essentially nonexistent (most of the time), my stool is nothing like what it was or that of a "normal" healthy person. But that's okay. Because my surgeon explained the details of life with a J-pouch thoroughly before I had the procedures done, I was able to understand how my body would function beforehand. Whereas without that prior, detailed explanation, I may have been worried or even thought something was wrong.

Expectations with an ostomy

My doctor also explained how easy it would be for me to become dehydrated faster when I had an ostomy. Because he explained the concept to me before I actually had my ostomy surgery, I was able to better prepare for life post-op. I bought bottled water in advanced. I was able to be proactive and address issues before they even arose.

Setting proper expectations plays is a big part of advocating for yourself. Not all healthcare providers are good at setting these expectations on their own. You may have to ask probing questions to remind them. After all, you're their patient, but you're also human. You need to prepare.

The biggest example I have of the need for setting expectations has to be my ostomy experience. Health wise I was prepared. I knew what to drink and eat, when I was cleared to do so, how much of *insert food group here* was ideal for me, etc. What I didn't know was:

• How to order supplies
• Where to order supplies from
• How much supplies would cost me out of pocket
• How much / many supplies I would need over a certain period of time

I realize doctors and other healthcare providers can't tell you everything you need to know about what to expect from any given surgery/treatment option, ect., but for what they don't know, I'm sure they can point you in the right direction. It's hard being a patient. It's hard living with any chronic condition, anything we can do to make it a tad bit easier on us at the end of the day is certainly worth a little bit of extra effort in my opinion.