Do Your Own Research
I have been in remission from Crohn's disease for a number of years and hopefully will continue that way. Over my three decades with IBD, perhaps the most critical element of my care has been learning to do my own research.
Don't get me wrong. Most doctors are great. Certainly, too, in many cases, you should listen to your medical team. Without my medical team, I probably wouldn’t be here right now. They really have come through for me. I have a lot to be thankful for.
Having said that, it is also true that doctors rarely understand the intricate details of your symptoms. It doesn't matter how well you describe them. They are not living your day-to-day reality.
Self-education and patient research
Each IBD patient is unique. There are even some theories that there are different types of Crohn’s disease or UC all lumped into one. The point being, if you have some symptoms that do not fit into typical patterns, you may need to do your own research. This self-education will help in a variety of ways.
Firstly, you can ask better questions in the doctor’s office. It can be quite helpful in discussing treatment options to bring up scientific studies you read. This lets your doctor know you are informed.
You also may be able to look into certain possibilities your doctor might not have considered. Maybe it’s a new drug. Or an unusual test. In short, the more knowledge you have, and the more targeted your questions during an appointment, the more likely your doctor can help you. (This, at least, has been my experience.)
Doing research does not mean ignoring your doctors
Doing your own research, of course, does not mean ignoring your doctors. I obviously take what they say seriously and most often follow their counsel. But... and this is critical... I don't always do so blindly. A good example is the issue of getting a second opinion regarding surgery.
Some do well with surgery. Others not so much. I've had three surgeries, my last two giving me quite some trouble. I know my body and I just knew, when my gastroenterologist and surgeon started recommending another surgery after a blockage, that it would take a toll on me. It just wasn’t something I wanted to pursue unless absolutely necessary.
By the grace of God, I avoided the last two surgeries they recommended, each after a blockage, and I've fortunately have remained in remission ever since.
Of course not everyone is the same. Sometimes you really need to get surgery. But again, if possible, I believe in doing research before making this decision.
Asking for a second opinion for Crohn's or colitis
Here's one example, in more detail, of how that helped me. It's 2014. I’d been in the hospital a few days after a blockage. My surgeon, who had done two of my prior surgeries, and my gastroenterologist both insisted I needed another surgery. I remained skeptical.
So I hired a top surgeon from another hospital to come in and give us a second opinion. Anyway, this second surgeon evaluated me and suggested it would be okay to try a biologic first before operating.
My original team felt my problem was more structural, more based in adhesions from prior surgeries, making operating a necessity. The new surgeon thought it was more a Crohn’s flare, but deeper under the surface, hence the biologic might help.
I went with the opinion from the second surgeon, which did not make my medical team thrilled. But I promised them if the drug didn’t work I’d do the surgery later. A few weeks after starting on the biologic, I felt dramatically better. The second surgeon had been correct. Had I not gotten that second opinion, I would have had a surgery I didn’t need!
Being a proactive, informed IBD patient
I guess what I’m saying is really investigate treatment options and always seek out second opinions when you can. Also, I recommend trying to always do a cost/benefit analysis of any drug or procedure and keep up to date with the latest research.
In the end it’s your health and being proactive can only help. Thanks for reading and I look forward to reviewing your comments below.
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