Time really does seem to fly by. On December 7, 2011 I was diagnosed with Crohn's disease. I remember being in the office of my gastroentologist (GI) with my parents and him telling me my diagnosis. During Thanksgiving 2011 I was hospitalized and my weight had declined to 125 lbs. Normally during this period I was around 150-170 lbs. Before I had Crohn's I was diagnosed with IBS and had this pain in my side (the kind of pain when you are running laps in P.E.) and took some medication to keep the IBS at bay. At first when I was diagnosed I was unaware of what Crohn's disease was. I can still remember when my GI told me when he my very first colonoscopy he said my colon was rotten and on a scale of 1-10 in terms of severity my colon was an 11. In hindsight I am lucky I didn't need an operation at the time. What I remember most from that period of time was taking large amounts of Prednisone. At one point I was up to 80 mg of Prednisone per day which made me feel like I was bouncing off walls, irritable, have a moon face, and constantly hungry. There were times I remember eating 5 times a day! The other thought I had was some initial depression since now knowing you had a chronic disease and knowing I would always and forever have it. My GI and I agreed to stick with Prednisone until I graduated from grad school. I graduated in May 2012 and then moved back home to live my parents for a while. At that time I was really crashing and can remember waking up really sick going to the bathroom quite a bit. At this time my parents had moved into a new house and remember waking early going to the bathroom watching T.V. for a little bit before drifting off to sleep. In June 2012 I started Humira and that has been the best thing I have ever taken and has dramatically changed my life. I would say 95% of my days now I honestly don't know I have Crohn's. These days I rarely have a loose bowel movement and every now and then have a stomach cramp but generally in overall good shape.
Back in 2013 I was diagnosed with c difficile after taking an antibiotic. I had tried Dificid which worked for a while and then stopped working and at the time it was difficult to find a provider that would perform fecal transplants. Back at that time very few providers were actually performing fecal transplants. These days doctors at large hospitals and institutions all over the country and around the world are providing for them. Back in May 2013 I was patient number 44 for a fecal transplant at the Mayo Clinic in Rochester, Minnesota. Since I was able to see the magic of having a fecal transplant change my life I have been interested in learning its application not only for Crohn's and inflammatory bowel disease but also Alzheimer's. I blogged back last October how an 82 year old man had c difficile and Alzheimer's and was given a fecal transplant. Six months post fecal transplant his mental state greatly improved going from mild dementia to a maximum Mental Mini Score Exam of 30. To add fuel to this fecal transplant fire in October of this year again I learned there was a case report of a 90 year old who greatly improved after a fecal transplant. I truly home fecal transplants are studied much more in depth to see if they can be applied to people with Alzheimer's and people with Crohn's disease.
We truly live in a golden age for drug development for Crohn's. The FDA has approved many new drugs for Crohn's even since I was diagnosed. The biggest drugs approved have been STELARA, Envtivyo, and Tremfya which recently has shown great results (65% of clinical remission in Phase II trials for Crohn's were published this past week) Even more recently as I write this Rinvoq has shown positive results in Phase III trials for Crohn's as well. Almost 40% of patients who took Rinqoq were in clinical remission after taking it. The other big improvement I have noticed is the bowel preparation for Crohn's/colonoscopy. When I was first diagnosed I remember having to drink all this Miraxlax and Gataorade. I actually remember the night before the colonoscopy falling down and I somehow ended up with a little white mark on the left side of my nose even thought it has been 10 years! Recently when I went for my last colonoscopy in August 2021 I was able to take Sutab (which just got approved by the FDA in November 2020) and I reviewed it here and all in all thought it was easier to use than the Miralax and Gatorade. Although Crohn's is very unfortunate if you had to have it now would be the best time in history given the therapy treatment available.
To me one of the amazing things is how many people actually read this blog. As I write this this blog has been read over 140,000 times! Not only do people in the United States read this blog but everyone around the world! My initial goal was just to have a repository for my own journey with Crohn's. These days my hope is someone will read it and be able to use the information to improve their Crohn's or inflammatory bowel disease situation. I am really amazed that I have published over 225 posts. When I started I probably thought ya it would be nice to start but had no idea I would be blogging for 10 years! One of my popular posts was back in October 2012 reporting some positive data on a drug called Stelera. At the time the drug had shown positive results but it wasn't approved by the FDA until September 16, 2016 (almost 4 years after I first blogged about it-hopefully the FDA read my post).
The most important things I have learned since being diagnosed with Crohn's is most importantly to be grateful for every day and to have compassion for other people who may be going through something difficult. Given before I had Crohn's I honestly never had any medical issues. Growing up I remember having donuts on Saturday morning and on Sunday sometimes we would have Cinnabon's and having to have bowel movements a few hours after. Living with Crohn's has taught me yes there will be good and bad days but to really cherish the good days. The only thing that I have noticed (which honestly was probably true before I had Crohn's) is I tend to get a stomach ache if I eat something very rich (chocolate dessert/something greasy). My general view of my stomach is thinking of it has a brown paper bag and if the food you eat will leave a grease stain then it probably will cause some pain or cramping. The other thing that really has helped me is getting a good amount of sleep (this can be a game changer from my own experience), taking hot baths, and using cold packs on my stomach. The first time I took a hot bath I remember feeling as if it changed my world. The cold packs help manage the pain even though I know it doesn't technically "help".
I am truly grateful for the medical care I have been provided and honestly never would have though (especially during my dark days early on) that I would have achieved remission for this long. To me I have been incredibly lucky that I haven't needed surgery to removal my bowel/overall have been in good health and when I compare myself to the average person and even people my age I don't feel as if I have had major differences in my health. Everyday I am able to work at a job I enjoy, work out, travel, and really don't have any restrictions. I truly am a lucky guy.
