Before delving into my own story I want to highlight that Crohn’s disease presents differently between patients and has a range of severity as it fluctuates between highly active flares and extended periods of remission. There are individuals who have much worse disease than me and others I know who have extremely mild disease. Just because my experience has been like this does not mean that yours will be represented by my writing. What you need to remember is that everyone with Crohn’s is unique in the severity of their disease, the type of diet that works for them and their ability to cope with the disease. On that note I’ll get going with when things started in 7th grade.
Suffering in silence: Middle school through high school (’02-’07)
In middle school I became a master of hiding serious physical pain. This was not without consequence, it turned me into a slow moving, quiet, stoic, bookish kid. I will never forget my dad would ask me all seriously, “Patrick are you okay? You just move so slowly and always are tired.” I would react with characteristic teenage spite and yell “IM FINE”. Thinking back we may have both been a little right. Let me explain… I definitely was physically slow walking around as I was chronically tired but I also was able to accomplish a lot for a kid who was pretty sick. I was a 2 sport varsity athlete (baseball, squash), climbed La Malinche (~14,500 ft volcano located in Tlaxcala, Mexico- proudest moment of my life thus far), and was a good student with friends. I tried to do as much as I could to keep up with the guys I went to school with but basically I could only get through the day. I never really ‘hung out’ with the guys and spent all my free time in the home-its where I knew there would be a bathroom around. During those days I was not comfortable in public restrooms so staying at home was what I did. My mother would approach me in a similar serious manner to my father and say “Patrick put down the books and call some of your friends”.
I would have months on end of using the bathroom 7-10 times a day with blood, chronic pain, chills and pain with EVERYTHING I ATE. Although I didn’t take my temperature I have always consistently just had chills and no fevers. Also during this time I consumed more Tums then probably ever recommended by doctors, thankfully no stones ever developed. **Parent tip: If there are known autoimmune diseases (especially Crohn’s) in your family be wary of the teenager who disappears frequently and/or for long periods of the time to the bathroom, always appears tired/slow moving despite sleeping quite a bit, always carries or consumes a lot of Tums, and has sudden decreases in weight and/or appetite.
The teenage years were filled with feelings of inadequacy and embarrassment. What 13-18 yr old guy wants to admit let alone go about the steps of addressing their GI issues? For these five years I didn’t tell my friends, parents, grandparents or anyone about my symptoms. Im not sure what exactly scared me, perhaps knowing the diagnosis im not sure, but the feelings were strong enough to risk my life through my silence. To cope with the physical pain I buried myself in the books and developed a love of science.
Finally at the end of my senior year of high school I finally told my mom about my constant bleeding in a tear filled kind of apology for being a burden and causing unwanted stress for them. The sense of relief I had finally telling my mom cannot really be captured in words. My mom just hugged me and cried, I will never forget her acceptance and warmth and how wrong I was about how my parents would react. It happened one morning actually I will never forget it, literally in a spur of the moment decision I said to myself F*** it I’m going to tell her now. Interestingly, I knew another young man with Crohns in college and he told me he also delayed informing his parents of his symptoms out of similar feelings of embarrassment. I suspect that this delayed informing occurs more frequently then we really know.
Reaching and reacting to the diagnosis:
We went to our family doc who I will affectionately refer to as “Old stone hands”. He had taken care of my mother when she was a child, all of my mother’s siblings and the 10 kids in my family (to give you a sense of how long he had been practicing). I think this guy had taken care of my whole hometown for the past 100 years or so. Old stone hands had a funny habit of taking his right hand and scrunching his whole face in thought… this wasn’t a place your hand over your mouth or on your chin pensively rather it literally was a grab your face and pull the loose skin together. All the while im this 18 year old kid staring at this excess skin being pulled together by this guy in amazement. He was a great doc with bedside manner to be emulated, but I think at this point in his career you could have gone into his office with a bone sticking out of your chest and he would want to look in your ears or eyes…all the while scrunching his face in thought.
Nevertheless he performed a basic physical exam (extremely intrusive for my 18 year old self) and did not find any external or internal hemorrhoids. He was calm and reassuring and I explained to him and my mother that I suspected I may have an ulcer given my symptoms and things I had read. He downplayed my concerns but was quick to refer me to a pediatric gastroenterologist.
This was the time I started to get angry and frustrated with doctors, myself and above all my diagnosis. This all was happening around Fall of 2006 and I felt like I’m an 18 year old guy who was supposed to be playing sports, going on a trip I had planned the upcoming Spring to visit Spain with friends and being able to eat without pain. I showed up on the steps of the gastroenterologist a tired, in pain and increasingly frustrated/pissed off kid. **Parent tip: consider having your teen talk with a counselor WHO SPECIALIZES IN COPING WITH CHRONIC DISEASE. IT WAS A WEIRD TIME FOR ME AND LEFT TO MY OWN DEVICES I REVERTED TO ANGER AND FRUSTRATION AND I STAYED IN THIS STATE FOR MANY YEARS.
At this time too I started to get scared for the first time. Not knowing the diagnosis and anticipating the diagnosis I think can be extremely difficult for a kid, at least it was for me. We went to an excellent pediatric gastroenterologist in the area and I was scheduled for my first colonoscopy and upper endoscopy. Again he downplayed the significance of what he suspected noting that I looked quite healthy and that he wasn’t sure what exactly would be causing my symptoms. At this point my symptoms were bad…daily pain that would bend me over 90 degrees, constant bouts of chills, exhaustion, dark blood daily, diarrhea, and having a feeling of incompleteness upon using the bathroom (the worst symptom in my opinion). Scheduling my first colonoscopy/preparing was extremely difficult as a teenager. Again this is an area where supportive parents/possibly counseling may help you. I was a pissed off 18 year old and I don’t think I am articulate enough to express how horrible I felt about myself having to get this colonoscopy. Thankfully I had my straight shooting Spanish grandmother assuring me that it was easier than going to the dentist (yes im serious she said this) but nothing really put me at ease.
We scheduled it for during my high-school Christmas break so I wouldn’t miss much school. The toughest part of the procedure (as everyone will tell you) is the prep where you have to drink I think 64 oz of clear fluids with the prep the day before and fast. *Patient tip- make sure the fluid you drink is very cold when you drink it, although the prep will dissolve easier in warm fluids it tastes much worse when it is warm. For me yellow Gatorade masks the taste of the prep the most, although it will forever ruin your taste for Gatorade. Also I found if I was hungry chewing gum helped some and wont ruin the preparations at all. The day of the procedure finally arrived and it was over before I knew it. The actual procedure is not bad or painful in any means it can just feel intrusive especially as a kid. That day I discovered my wonderful habit of flirting with the old colonoscopy nurses while waking up from anesthesia. Of course my parents were there for this so add more insult to my already high sense of embarrassment.
As I came around and the doc came out to talk with us and I will never forget what he looked like and said. He looked concerned and talked with my parents and I and said, “I have never seen someone as sick as you look so healthy externally.” During our follow up appointment he told me I had severe Crohn’s disease which was the worst case he had seen since medical school. I think this devastated my mom more than me because I felt a sense of relief. Knowing the truth really goes a long way. We discussed treatment options and decided on a conservative approach of oral meds for six months, re scope me in 6 months and reassess the course of action. He also told me I would not be going on the trip I had been so excited for with my friends, that devastated more than anything else. I already felt isolated and alone in the pain I had become used to, but this was further fuel for my anger. Feeling inadequate and unable to do things due to physical things outside of your control I think is pretty heavy stuff for anyone, let alone an 18 year old guy. I will discuss how Crohn’s is diagnosed and differentiated from ulcerative colitis in the ‘what is Crohns’ section so this brings us to starting therapy….
Failing treatments: January ‘07-Summer ‘07
I was started on a regimen of about 25 pills a day including pentasa, 6-MP, budesonide, flagyl, iron and several medications I cannot recall. I forget the exact dosages and don’t have my records on hand but suffice it to say I was taking a lot of pills. My parents bought me one of these 7 day, 4 times a day pill boxes that I lugged with me everywhere for 6 months. The pills were so large they had to be arranged exactly right to ensure they would fit into the provided slots. I finished off senior year of high-school and was doing so poorly physically that my physician and parents essentially decided I would be attending the university near my home in case things happened. Anyways that’s a story for a different day. I hated having to carry the pill box around with me everyday but I dutifully took my pills and was hoping for the best. Six months passed, I graduated and was ready for round 2 of colonoscopy/upper endoscopy. I had learned my lesson about keeping the drinks cold so the prep wasn’t as painful but I wont lie it still isn’t pleasant. The follow up appointment showed no histologic improvement (the GI tissue remained in the same disease state). I had spent the last 6 months of my senior year of high school lugging these pills around, unable to go on a trip I had planned on and had my college decision made for me. I was pretty livid, thinking back this doc definitely should have recommended me go talk with someone about my feelings because I was not a happy camper.
The medications of college and beyond: Fall ’07-Spring ‘14
After the oral medications failed, I was initiated on Remicade (infliximab). To me this was a serious escalation in the level of drugs and I needed it. I began to feel better on Remicade after about a month of initiating treatment and this continued through my sophomore year of college. While I was feeling better I still would have fairly sporadic symptoms that couldn’t really be explained by the GI doc. I would have sporadic blood, pain and the chills never really left me. By sophomore year of college I had outgrown my pediatric gastroenterologist and was referred to an adult GI group. I wouldn’t say my response to Remicade was optimal but it certainly broke me out of the serious disease I was facing in high school. We tried increasing the frequency of Remicade infusions but again I still had symptoms. Looking back this was likely due to poor diet control (which my doctor never discussed with me) but I will talk more about managing life in college in a different post. At the adult group we discussed my sub optimal response to remicade and we decided that Humira may be a better option. Part of the difficulty with Remicade for me was that whenever I went to the outpatient infusion center I would get wiped out basically for about 36 hours due to Benadryl IV. Humira seemed like an easier option where they would just show up on my door and I would take them.
Humira was the drug I needed, I think I went into real remission with Humira and I remember feeling better quickly. I switched sophomore year of college and I was able to pack on lbs by lifting weight. Humira was a great drug that I wish had never failed. I took humira starting the end of sophomore year until the summer of 2014 where I began to experience a serious flare. Although it is still a research test I took the Prometheus Anser ADA to examine whether I had antibodies to Humira. Although having antibodies alone doesn’t necessarily mean treatment failure, the active symptoms I was experiencing just before starting medical school meant Humira no longer was the drug for me.
Where I am today: Summer ’14-present
I transferred care to where I am at medical school and I am being seen by a very good IBD specialist here. We discussed the implications of having burned through two anti-TNFa inhibitors and we considered seriously to switching to an anti-integrin medication (medical jargon for a different type of immune suppressant medication). Unfortunately for now the anti-integrins seem to have higher efficacy in patients with ulcerative colitis and much poorer responses in patients with Crohn’s. I asked the doctor several questions about whether patients who have already developed antibodies or failed an anti-TNFa regimen are at higher risk for subsequent failures, what the cumulative incidence of developing antibodies to these medications are and if the rate is higher in treatment experienced individuals such as myself. He said the studies had not been done so if I find some answers I will post them on here and share with you all.
We decided on Cimzia injections hoping that I wouldn’t develop antibodies to the humanized Fab region of the antibody which is pegylated (meaning it sticks around longer in your body-1 injection a month) combined with 6-mp. Well I thought this was going ok, I had my baseline level of discomfort throughout the semester and then I just had a bad bowel perforation so who knows. Currently as I recover from surgery I am taking budesonide (a really good drug although it is quite pricey). I have no idea whether we will try to restart Cimzia with/without 6-mp but we I have an appointment in a few weeks and will keep you all posted.
How I became an ileostomate
I am basically a brand new ostomate and to tell you the truth it still feels like I am trying to just catch up and come to grips with having this thing. At this point I feel like it is more of a psychological battle than a physical one but I will get to that later, first ill fill you in on what happened. It started the night of 12/11/14 around 10 pm. I had felt ‘normal’ that day (whatever that means) and had even taken an exam in the afternoon for population health. I felt tired that day with some discomfort but nothing out of the ordinary until the night. Around 8 pm I was studying and noticed a sharp pain in my abdomen that resolved in maybe like 15 seconds. Honestly I didn’t think much of it, that kind of thing is not out of the ordinary for me and I chalked it up to something I may have eaten. I increasingly felt distracted from studying and just ‘out of it’ so I just decided to call it an early night. I brushed my teeth, got ready for bed etc and got in bed. I got in bed on my side and knew something was wrong immediately. I ran (actually basically crawled b/c I was doubled over in pain) to the bathroom and called for my two roommates for help (also medical students).
This was the worst abdominal pain I have ever experienced. It was sharp and over large areas of my abdomen, and I couldn’t figure out anything to make it feel better. You know how sometimes you can change your posture something and it may offer relied…this was just straight up unremitting pain. In the bathroom I began sweating profusely (to the degree that it looked like I had just gotten out of the shower) and moaning in pain so my roommates quickly called 911.
EMTs arrived in what seemed like 10 seconds. They did a brief exam feeling my abdomen and back and suspected possibly a kidney stone because well it didn’t feel like Crohns pain and people always say stones are incredibly painful. The pain started in the epigastric and left lumbar regions and as I said, it was seriously intense. I don’t know why but the pain kept shifting around to different abdominal regions and at this point I started getting chills. The EMTs and my roommates helped dress me quickly and we needed to get out of my 3rd floor apartment. One roommate and an EMT essentially carried me out of the building because I couldn’t walk and was so focused on my abdomen I couldn’t really talk. I guess a funny habit I just get really quiet when I’m in pain.
The EMTs informed me that the hospital right near my apartment was full and calls were being diverted to other area hospitals UNLESS I HAD BEEN STABBED OR SHOT. I actually thought this was hilarious and you know things aren’t right when you begin thinking wow if only I had been stabbed I’d be okay. That stupid thought passed quickly because my roommates decided to rush me to the ER at my desired hospital…which turned out to be a great decision. We rolled up to the ER and it basically looked like a primary care clinic with people running around everywhere and families, kids, people eating, wearing masks etc. I was scared of getting the flu in that room, it was like me and a 100 flu patients like a scene from some kind of outbreak movie. Looking back I’m chuckling that we had to wait for 2 hours but my pain stabilized and I just sat in that wheelchair not saying a thing. Eventually the pain kept getting worse (again epigastric) and only my moaning in pain and my roommate yelling at the triage nurse got me into a room. My roommates had an exam the next day and they stayed with me until about 3 am when I went back for surgery. I am lucky to have incredible friends like these guys who took care of me.
The ER docs got me on pain medication which helped a bit and I waited for a CT scan. I had an amazing male nurse that night (who I had seen before earlier in the semester on my first run with this ER, there aren’t many people who can claim continuity of care in the ER!). Unfortunately, for the CT scan you have to lay completely flat on the machine which generally isn’t too compatible with intense abdominal pain. But we got the scan done finally and about an hour or so later a group of like six guys came in all flustered and said “You have a perforated abdomen and need surgery now”. I don’t remember this but I ended up calling my parents around 3 am and very frankly explaining well mom I need surgery like now, please make your way here (my parents are about 2 hours away), I will be okay.
I said I was good to go, that much pain will make you hop on board with anything. The surgeon knew I was a medical student and asked if I wanted the surgery to be filmed, I told him hell yea! How cool would it be to learn some trauma surgery from your own operation? I was told later he was unable to film the operation which is a shame because I would have posted it on here. That’s all I remember from that night.