And should I then presume?
And how should I begin?
— From “The Love Song of J. Alfred Prufrock” by T.S. Eliot
In 2009, I was diagnosed with ulcerative colitis. I learned on day one that this would be a very life changing disease. Looking back at my diagnosis, it seems pretty clear to me all the conditions that aided in escalating my symptoms. While nothing in particular really caused the disease, certain aspects of my lifestyle certainly didn’t help.
There is a LOT to digest with my official diagnosis and I’ll be writing more about each part of it in later posts. For now though, here’s the basics of how my diagnosis played out.
There Is No Cure For Crohn’s!
I want to be very clear and not give you any false hopes or expectations. Anyone who tells you they have a cure for Crohn’s, ulcerative colitis, or any other inflammatory bowel disease and/or autoimmune disorder is selling you snake oil.
Depending on your GI doctor (gastroenterologist) you might be told that doctor’s don’t know what causes it. They’ll also likely tell you that they don’t know if diet, exercise, stress, or your gut flora play a factor. They might...but there isn’t any clear research that says any of these things contribute to the cause of the disease.
Doctors on the functional medicine side of things might tell you with a high degree of assuredness that their approach will put you into remission. Even they don’t know what the root cause is for autoimmune disease. Most of what they’re going off of is merely theory.
But that’s not to say you should give up hope. While I still have bad days, I’m much better than I was and I feel I have a higher quality of life than I did when my symptoms were at their worst. What worked for me could work for you. Just keep an open mind and don’t give up
My Lifestyle Before IBD
Prior to being diagnosed with inflammatory bowel disease, I was more or less like anyone else who gets this sort of diagnosis. I was working a new job as a web developer and, like many jobs, the stress level can be a bit high. Deadlines and every day project demands can have its toll. I usually didn’t go to sleep till sometimes 1 am but still woke up fairly early in order to get ready and be in the office by 9 am.
I was also self-conscious about my job anyways. Was I doing ok? Was I learning enough new things to keep my job as a developer relevant? Am I part of the “team”? Are clients pleased? What can I do to avoid being yelled at by them? Not that I was getting yelled at all the time...but I was taking on a lot more client relations than I was comfortable with at the time. It was all a new experience and I was diving in head first. That added to the stress level as well.
Along with this my diet wasn’t great. I drank a LOT of sodas, fast food, and candy. Dinners consisted of a lot of high carb, sometimes overall greasy food. Just an overall really shitty diet to say the least.
I also never did any exercise and wasn’t in the best shape. I wasn’t super fat...but I wasn’t super skinny either. I’ve attempted to start some sort of exercise practice but nothing ever stuck. My wife and I tried going to the gym multiple time, starting a membership only to end it some months later. Epic fail! I was more or less the classic couch potato. Netflix and chill! Ugg!
One of the first days when I noticed symptoms was the night when I started having some pain in my anus. Putting it delicately, I had an abscess forming and didn’t even know it. Really didn’t even know what the hell it was. All I knew was that I couldn’t sleep and was in pain all night. The next day I was sore but the pain subsided.
However, many days later, I noticed a bump forming just outside my sphincter that would later become an opening for a fistula. Once it finally popped, I basically lived with a hole in my butt that kept draining with puss and blood and had to be flushed now and then. Eventually I had surgery but that wasn’t until way later on.
Not too long after getting the abscess, I started noticing blood in my stool. At first, I figured it was due to the abscess but, after the initial pain of the abscess went away, the blood in my stool just kept getting worse. Plus, I started having pain with my bowel movements with what looked like mucus in my stool. At that point, I knew something was wrong and made an appointment with a gastroenterologist.
After a few visits and what would be my first experience getting a colonoscopy, I was officially diagnosed with ulcerative colitis.
Drugs, Drugs, and Even More Drugs
I was given enema treatments of mesalamine to knock down the initial inflammation along with a prescription of Asacol. Neither did much other than help ease some of the symptoms.
Now, my doctor gave me lots of other things including an antibiotic cocktail: three different antibiotics that supposedly helped my symptoms. Not sure exactly what the purpose really was and, frankly, I think it kind of screwed me up.
I was still having tons of bowel movements and, sadly, was seeing my symptoms escalate into bad territory. I ended up losing weight due to malnutrition, got heavily dehydrated, with a low blood cell count due to a lack of iron. End result was that I started getting dizzy and throwing up. Off to the hospital I go! I’ve actually had multiple trips to the hospital. Each time I’m given prednisone along with antibiotics to curb off infection and iron to help boost blood cell production.
From there, I started my first infusion treatment with Remicade which, initially, seemed to work better than anything. However, thanks to an insurance snafu, I wasn’t able to continue treatments. Since then, I’ve been on other treatments including Imuran, Entyvio, and now Stelara (which seems to work ok).
No Real Explanation
After having to end Remicade treatments, I wasn’t happy with the way the system was working. Even now, I’m not happy with the way the medical industry treats IBD. Virtually every doctor always treats the symptoms but not the disease. And with every drug, it’s always phrased like you’ve failed this drug, not the drug failed you.
Every doctor I’ve had I’ve always asked about the root causes of the disease. And every time I’m given the same song and dance. We don’t know what causes the disease they say. I ask if diet has anything to do with it and they always answer, no, diet doesn’t appear to be a factor. I ask if exercise helps and, again, it’s always an answer along the lines of exercise may help but there is no evidence that it can reduce symptoms.
Even doctors on the other side of the spectrum, the functional medicine doctors, don’t have solid explanations. I mean, they do...but it seems much of it is super theoretical and unproven. Some of it is downright voodoo science with some really quacky treatments.
I’ve read a lot of books and articles on the topic of inflammatory bowel disease. When my disease was reclassified as Crohn’s disease, I knew I had to rethink my approach to this disease. There has been a LOT written about this disease with a lot of independent research. Lots of theories with lots of hope...but also a whole lot of hyperbole to boot. I’ve learned that the answer is likely somewhere in the middle. Traditional doctors are learning from functional medicine doctors and vice versa...but they still have a long way to go.
And, yes, diet and exercise can help. Any doctor that tells you different is smoking something.
So, where do I go from here? I’ll go further into my symptoms for sure and share my experience with some of the symptoms and treatments I’ve had. But what I really want to dive into is what I’ve done in the past few years to control my symptoms further than what drugs are capable of doing. I’ve learned that drugs alone don’t do it. It’s really a combination of medical treatment plus a healthy lifestyle with a good diet and solid exercise program. There’s obviously more to it than that but we'll get to that soon enough.