A baby that was born on the day I was diagnosed can now drink legally. WEIRD.
21 years ago this fall, I began having my first experience with endless bouts of bloody diarrhea. Through hospitalization and a colonoscopy I was diagnosed with Ulcerative Colitis. As I was reflecting on this the other day I thought about the many things in the medical world of autoimmune bowel disease that have changed for the better.
Here are some of the ways I’ve seen things improve over the last 21 years -
Open minded doctors - it is my understanding that doctors STILL hardly receive any nutritional training in med school or in continuing education. Fortunately, I often come across stories of doctors learning from their patients in this area. My current gastroenterologist is one of these good ones. He has seen me go from my near death bed in the hospital to flare-free thriving over the last decade. He has always listened, truly listened to me when I’ve shared with him the diet and lifestyle changes I’ve made and the positive results. I feel supported by him 100%.
My hope is that he is an example of a bigger movement of physicians who are no longer denying the role food choices play in our health. This is a glorious change from what gastro docs who came before him have said to me and many others, “Diet has nothing to do with it.” (Insert giant eye roll here).
He’s told me that if I were ever to start to experience a flare again he would want to try more natural approaches, like capsulized turmeric, over jumping right to medications. For as long as I’ve been flare free he has never suggested that I take maintenance/preventative drugs, as he can clearly see that they aren’t needed. Again, several doctors in the past have told me I'd have to take preventative prescription anti-inflammatories, and then that I would need to be on immunosuppressants for the rest of my life. He really GETS IT and I am proud to be his patient, yet I still hope I only have to see him every 2 years just for my colonoscopy!
Antibiotics - another positive change that I’ve seen is the reduction in blanket antibiotic prescribing. From the time I was diagnosed through my big flare it was standard protocol to prescribe antibiotics even though I had a definitive diagnosis and it was clearly not a bacterial infection. In the early years every time I had even a minor flare, I went on a round of antibiotics in addition to other meds. Then, for reasons never really explained to me, I was put on round after round of antibiotics during my terrible flare of 2010; at some point I was taking 3 different antibiotics at the same time. While in the hospital I suppose the case could have been made that it was to prevent a c-difficile infection on top of a huge flare, but it still seemed terribly excessive and the effects of the huge amounts of antibiotics took me years to fully get over (hello massive yeast overgrowth!). Many, many probiotics were consumed, in addition to consistent healthy diet choices, in order to repair my gut health and help prevent another flare just from the effects of the antibiotics.
I’ve heard through the grapevine that this long standing protocol has been done away with, or at least greatly reduced. This was further evidenced when my mom recently had a small U.C. flare - I was very happy to hear that her doctor did not prescribe her antibiotics and told her that practice is no longer typically done for U.C. Hooray!
Colonoscopy prep - Colonoscopies, while they still will never make it onto anyone’s favorite things to do list, are really a piece of cake now. The prep is of course still required in order to cleanse the bowels so that the scope can get clear images of what’s going on inside, but it has gotten so much easier over the years, and far less disgusting. I remember when I was hospitalized in 1999 and was needing to prep for my first colonoscopy. The nurse brought in a GALLON of liquid that was optimistically called “Go Lightly” and told me I had about 4 hours to drink the whole dang thing. After weeks of suffering and at least a few days of not being able to eat anything, even liquid foods, there was absolutely, positively no way that I was going to be able to drink a gallon of that stuff, which, by the way, tasted like ridiculously salty syrup that had been sitting out in the sun for days. Let’s just say the poor nurse had to deal with my tears and then had to go in the other end several times in order to do a thorough cleansing. God bless all the nurses!
Now the prep drinks are way less of a big deal. They are a much smaller amount and far less gross. I even had one a few years back that was almost pleasant tasting. The worst part of the prep is not being able to eat anything solid the day before, but c’mon, it’s only one day!
Colonoscopy anesthesia - the anesthesia is much improved now and easier to recover from. The last several times I’ve had it I’ve woken up afterwards sleepy but without the miserable extreme grogginess of times past. By the time the doctor arrived at my recovery bed with the report a half hour or so after, I’ve been alert and able to understand my good results.
So, if you are 50 and older, or have other risk factors, or ANY bowel issues or symptoms, GO GET YOURS. I mean, seriously, the Black Panther himself Chadwick Bozeman just passed away from colon cancer at 43. If for no other reason, then in honor of him, go get your freaking colonoscopy. It’s REALLY not that bad.
General embarrassment levels - another thing of note is that, because disease is so rampant in our society today, people are less embarrassed or afraid to talk about things that not too long ago were more taboo - you know, like bloody diarrhea! I suppose this is the one potential silver lining of disease levels increasing - it's forcing us to get out of our comfort zone and talk about the hard stuff. The more we share our own experience, the more awareness we create, and the more people hear the message about how to heal and stay healed.
Me - one more thing that has changed is me. Being so sick for so long helped me take a long, hard look at absolutely everything, and I’ve made and continue to make a lot of fundamental changes in all areas of my life. I continue to see the world with a new perspective and a lot of gratitude. I’ll never forget that this disease almost took my life and that I'm fortunate to still be here.
Even though all of the above has changed for the better, sadly one thing has gotten way worse. The percentage of people, both young and old, diagnosed with bowel disease and colon cancer JUST KEEPS GOING UP. Let’s do whatever we can to make sure we don’t become a statistic, starting with critically analyzing our own diet and lifestyle choices.
Please consider reading some of my other posts for what will hopefully be encouraging tips to get you started or keep you motivated!
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