The Many Questions, Decisions, and What-Ifs of Crohn's and Colitis

Being diagnosed with Crohn's disease or ulcerative colitis certainly has its challenges. In addition to being handed a life sentence of living with a chronic illness, we suddenly have to navigate this complicated journey of symptoms, tests, treatment, and side effects. It can feel overwhelming initially, but most of the time, patients will start to get the hang of living with IBD and know what to expect on a daily basis.

When new symptoms crop up

However, there is always a chance of a new issue or symptom popping up or a new medication that must be introduced, and patients are faced with asking their care team questions in order to receive the best answers and make the best decision for treatment. And, it can be especially frustrating when our questions are met with resistance, reluctance to answer, or (the worst!) conflicting suggestions from other providers on what is the best course of action.

Regardless of the situation, asking questions is always the initial instinct. We don't just try a new biologic or do a series of tests that may or may not be helpful. Nor do we easily swallow that the pain we are experiencing is just "all in our head."  We question. We question some more, and when we still don't get an answer we want (or need) to hear, we go somewhere else and ask those same questions. 

But, at what point must we simply surrender and say "okay"?

Crohn's and colitis treatment questions

Take, for instance, the example of starting a new biologic. Maybe you swore you would never go to that extreme to treat your moderate symptoms. However, after your disease has progressed for several months, your doctor suggests you start one. Initially, you will ask what are the possible side effects, how it will effectively treat your symptoms, and the cost. 

Then, you go home and think about it more and realize that it is best to consult with fellow patients about their own experiences with the drug before you make a decision. After doing research and interviews, you feel less confident in your decision to start the injections, so you return to your GI and pose him with more questions based on your findings. 

He or she may answer your questions directly or give a roundabout answer to the best of their ability. Maybe you have even more questions and doubts after this conversation, or maybe you will just accept and forge on with using the biologic anyway.

More questions... And no real answers

Another common issue is when we experience new symptoms and must ask many questions before understanding what is causing them. Think about a time when you started to experience a "weird" symptom like a skin rash that may or may not have been related to your Crohn's. You called your PCP and they said, "It seems like a dermatitis issue, call your dermatologist." To which the dermatologist says it may just be from the new detergent you are using. Unsatisfied with your answers, you go to your GI and the answer is simply, "It may be a Crohn's symptom."

What?! How can that be? You lived with this disease for a decade only to now discover that skin issues can be a symptom of Crohn's? And, upon asking how it is treated, you are told that maybe a topical cream will treat it, but it can still come back in the future. 

The symptoms/treatments/questions cycle (and accepting it)

So, how far do you go to get the answers you want and need? At what point do you just accept that this is a new "issue" you have to deal with, and it may or may not return? At what point do you stop asking questions and just "accept"?

We, as patients, are constantly faced with questions about our disease, and must decide how many questions we will ask and how many second or third opinions we can get before we are satisfied. Have you ever had an issue arise or a new decision that had to be made about treatment where, after asking many questions, you finally had to surrender and just accept?