Be A Smart Patient

On January 28th, I had my first appointment with my new gastroenterologist. The first gastroenterologist that I ever had was not for long-term care so my family doctor set me up with a new gastroenterologist but he retired about 2 years later. When he retired, my family doctor set me up with yet another gastroenterologist. It took me a while to finally get an appointment since it was rescheduled twice, but it was worth it. She's amazing. I wasn't sure if I should be excited or nervous but everything turned out okay. In fact, it was better than I could have ever imagined.

I told her my whole history with intestinal disease. I first started having symptoms of blood in the stool around December 2011 but there was never any pain. My first colonoscopy in July 2012 showed inflammation and ulcers in the end of my large intestine and I was diagnosed with proctitis. I was prescribed cortifoam and then suppositories but the blood came back after I finished those medications and I was then sent to another gastroenterologist. This new one sent me for another colonoscopy around January or February 2013 which showed that there was now only inflammation in the end of my large intestine but it was all in one spot and I was prescribed enemas. I was also sent for a  CT scan (which was messed up because I was not given correct instructions) and it showed a suggestion of tightening of the end of my small intestine. My gastroenterologist said that that meant it was Crohn's Disease and I was prescribed mesalazine tablets which I had to work up to 8 per day. I continued taking enemas but the thing is that the blood would go away while I was taking enemas or suppositories but it would come back after I stopped the medication. At one point, I decided to try something on my own. I decided to try working with my diet to see if I could figure out a diet that would help me all the time, or at least most of the time. I started with following a low residue diet and then moved onto a pescetarian diet in May 2015. By following a pescetarian diet, I was not getting any blood most of the time, and when I did get blood, it was only a small amount. I also wasn't sure about the mesalazine tablets. I always asked my previous gastroenterologist if they would help the inflammation at the end of my large intestine and he always told me that they didn't really make it that far down. So I was always left thinking "Why am I taking so many of these pills if they won't even help the bleeding?" I just assumed that they were all for my small intestine but I decided to lower the dose myself to 4 per day.

I was afraid that my newest gastroenterologist might be a bit disappointed in me for lowering the dose myself or that she might not be a big believer in trying a pescetarian diet but I had nothing to worry about. She was so nice and she appreciated how much I knew and understood about my situation. She said that my question about the mesalazine tablets in regards to my situation was a very smart question. She also told me about how a test had shown that a pescetarian diet worked better than a normal diet when it came to patients with an intestinal disease. She explained that it's actually a very healthy kind of diet. The one thing that she said that made me the happiest, however, was that, looking at my previous tests and everything that I told her, it looked like I actually did have ulcerative proctitis and not Crohn's Disease. She explained how much better proctitis is than Crohn's and colitis. Proctitis is quite common and it does not put a person at higher risk of colorectal cancer. It can be treated simply with suppositories during a flare-up. She explained that some people have a lot of flare-ups and other people might just get a flare-up once in a while. She told me that I didn't have to take the mesalazine tablets anymore. I was so relieved! For several years, I had worried about my intestines and my health since I had been told that it was Crohn's Disease. I was worried when I decided to lower the dose of medication myself. I was worried that I would get a new gastroenterologist who would just send me for tests and prescribe me medication and wouldn't really listen to me. I needed someone who would listen to my questions and concerns. I needed someone who was okay with me trying things on my own to see what would work for me. In the end, I got the kind of gastroenterologist that I needed and I am so glad that I did!

I went through all of that over the course of five years. I worried and was stressed out over all of this for five years of my life when I didn't even have to be. If my second gastroenterologist had paid more attention to all of the information and he had really listened to my questions, maybe I wouldn't have had to take medication that didn't even do anything for me. I took the medication because my doctor told me to. Since he had told me that it was Crohn's Disease, I was worried that it would get worse someday. Along with school and everything else in my life, I really could have done without the stress that all of this caused me. Everything happens for a reason and, no matter how bad, can eventually lead to something good, though, so I guess that all of this had to happen for me to end up with my great new gastroenterologist.

Some people do everything that their doctor tells them to do without a second thought. Some people don't educate themselves enough about their health condition or ask enough questions. I learned about IBD and asked questions. I really thought about the medications that I was taking and looked at other forms of treatment as well. We need to listen to our doctors because they are highly educated in their medical field, but we also have to remember that this is our body that they are treating, so we need to know what's going on. We need to learn about our health conditions. We need to learn about our medication. We need to learn about other treatments available. We need to talk to our doctors, ask them questions, tell them our concerns. We need to discuss everything with them and not hide anything from them when it comes to our health. We need to be smart patients because sometimes, like in my case, doctors aren't always right about everything.

I guess what I'm trying to say is this: Listen to your doctor, but at the same time, understand what's going on and work with them to come up with a plan that works and  that you and your doctor both agree on and think is best for you. Tell them your concerns and don't be scared of them. If you feel that they are not the best doctor for you, that they aren't really listening to you or that they just say and do things and don't really evaluate the situation enough, then look into finding a better doctor. Don't just be a patient, be a smart patient. Trust me, it will help you in the long run.

Take care,
Kay