All I wanted was for the pain to stop. I wasn’t looking to solve any larger puzzles that night. I wanted relief, determine the source of the ache and then head back home. We had friends in town visiting and I was a little embarrassed that their vacation was being interrupted by a late night trip to the emergency room. Murphy’s Law usually results with our house breaking down when friends or family come visit. We’ve had the fire alarms go off (and it only happens at 3 a.m., naturally), the A/C unit bust (during the summer, naturally…Briggs and I went delirious in the heat waiting for the repairman), garage door breaking…the works – but only when people come and visit. It would be way too convenient for it to happen while nobody was here! But this was something new; a trip to the emergency room on a Friday night.
I’m fuzzy on the exact details but this is what I remember. Not surprisingly, there was a lot of waiting followed by a lot of tests. Chest x-ray, CT of my abdomen and pelvis, blood work – they did it all. It was three in the morning but I felt like I was in constant movement, being carted around from room to room. As we waited in the emergency room earlier in the morning, our patience and my pain threshold were tested and we both grew weary… Angela and I found humor, because that is all we had. We’ve never seen “Grey’s Anatomy” and often we feel like the only people in America that haven’t. So maybe it was ironic humor getting the best of us or just through plain delirium but as the clock ticked in the waiting room I started to joke with Angela “Is this how it is on Grey’s?” and then as I was being wheeled through the different corridors with Angela by my side I’d remark, “I feel like I’m on Grey’s”. Most of the staff at the hospital probably thought we were loons and it probably doesn’t make a lot of sense for most of you reading - but for Angela and I, it was something we could laugh about – just the two of us, our way of finding some kind of solace through all of the medical mysteries we had encountered. We’d do a lot more of this over the next year and a half.
The emergency room doctor was very nice but also very hurried. He was pretty swamped that night and here I was, just a normal looking guy with a stomach ache. The tests didn’t return anything remarkable but there were abnormalities, particularly my small intestine – some kind of fluid build- up. This, combined with my history of gastrointestinal issues led the ER doctor to the conclusion that I might have Crohn’s Disease or Ulcerative Colitis
What? What is that? Well, for starters - and at the time this is all that mattered to me – it was something I could use to explain all of the problems I had been having. I knew something was off and hopefully with this Crohn’s/UC thing I can take some “magic pill” and return to living a normal life again. My stomach and arm pain had subsided thanks to pain relief provided by the hospital so with this news I was ready to get home, see Vincent, spend the rest of the weekend with the Allard’s and start reading about these gastrointestinal diseases. The doctor recommended admitting me into the hospital for more tests to confirm Crohn’s or Colitis but with friends in town and a busy week of work ahead, I declined and decided to schedule the necessary tests later that week. I was leaving the hospital in pain but at least now I was a lot closer to a conclusion, could head home and see Vincent, crawl into my bed and finally get the IV removed from my arm.
The next day I was pretty limited with my movements and remained in bed for most of the day. The Allard’s took our car and did some touring of San Antonio on their own and at night Angela took them out for dinner. They left the next day to head back to North Carolina and I again took it very easy. I was feeling better, the sharp pain had become a dull ache and my left arm was feeling a lot better. I considered working from home on Monday just to ease myself back into the workweek but with future doctor’s appointments sure to follow I wanted to limit my time out of the office. That seemed like a pretty good idea at the time, anyway.
Monday morning came, and I don’t think I made it 3 hours at work. Relaxing at home with a wife that goes out of her way to make sure you are comfortable just isn’t the same as a Monday morning in Corporate America. In fact, the two could be viewed as polar opposites. I made it through my first meeting – long deep breaths, this wasn’t my first time navigating through pains, whether they resided in my stomach, head or otherwise. By the end of the hour two, I had to throw in the towel. I gave my manager the condensed version of my exciting weekend trip to the emergency room, called Angela and headed home. She had already called my parents to come watch Vincent and off we went to the hospital.
Angela spoke with the hospital ahead of time and the expectation was that we would be admitted immediately and we would begin scheduling the necessary tests. Unfortunately, it didn’t work out as smoothly as that. Instead, since the hospital was near capacity, we had to navigate again through the emergency room and re-live the same horrors from the other night. By now, I had lost count of the number of times I had told my story to various medical staff…all of the weird ailments, not sure of how they add up – and the best, trying to quantifying the pain I was feeling “on a scale of 1-10”. Still not sure what that even means. I’m a husband, father, full-time professional and part-time student so I’m not going to waste the hospital’s time, my family’s time, my job’s time and my time unless this pain is really messing with me. After almost an entire day of waiting, more tests (a full body scan this time) and another IV, I was finally admitted into the hospital.
Not surprisingly, over the past week I had been living with the night sweats again. I wasn’t sick – I felt great when Mark and Melissa arrived, but the sweats were still there each night to remind me that something was off. As the hours I spent at the hospital increased, the worse I began to feel. One of the reasons I never liked going to a hospital or doctor’s office is because each time you go, your chance of getting sick increases – from being around others that aren’t feeling well. And the odds finally caught up to me and it wasn’t long before I had come down with something. So now in addition to the pain, I started to feel like I was getting the flu. Soon my body temperature would catch up with how my body felt, and this would only prolong our stay at the hospital.
One lesson learned from our stay at the hospital was – if you are going to have a mysterious medical issue arise, try to avoid having it during the summer, when a lot of doctors and other medical staff are on vacation. We’d been at the hospital for almost two days before we met the hospitalist; he’d just returned from a trip to Vegas. We had better luck with my gastrointestinal (GI) doctor. It was well after dinnertime our first night in the hospital but by sheer luck and timing, we ended up meeting with one of the “Top Docs” in San Antonio – and for the first time, Angela and I felt like somebody was actually listening to us. Truly listening, he wasn’t in a hurry to get to the next patient, wasn’t quick to order and test and run – he wanted to know my complete history and understand all of the issues I had been facing.
After talking through my ailments, he recommended an upper endoscopy which they scheduled the next day. I won’t go into the details about the procedure and I was knocked out, anyway – or at least with the sedative it felt that way – but I woke up later with Angela by my side and talking with my GI doctor. He had discovered some inflammation in my lower intestine which would potentially confirm Crohn’s. Unfortunately, Crohn’s is similar to MS, in that there are no easy tests to figure out what you have. This was just the first step.
The endoscopy was on my second day in the hospital. Up until this time, I’d been pretty lucky the first three decades of my life. I had some bumps and bruises along the way but I’d avoided broken bones and never had any overnight stays. So the first few nights were rough. I was sharing a room with another individual who, among other ailments, had a continuous cough that made the hairs on the back of my neck stand up each time I heard it. This is my blog about MS, not a Stephen King novel, so I will just leave the details at that. Angela reminds me of many other details of this horror story but I will spare anyone who happens to be reading this…feel free to ask her about it sometime, she’ll have a great time filling you in on the details! Almost as bad and maybe worse than his blood curdling cough was that he had his TV on all night. Never turned off, or if it did I was either passed out or dreaming it was still on. And it was the same channel, all day and night – showing re-run after re-run of Law & Order. Yet another popular TV show that I’ve never seen and promise you that I now never will. If I see it on TV I have to turn away and leave the room, the opening “dun dun” was a fixture in my mind for days to come.
Angela arrived the second morning and my health had by then greatly deteriorated. I was now running a high fever, had multiple bouts of sweats, loss of appetite and only felt that I was getting worse. I shared my first tip on not hitting up the hospital for an extended stay during the summer and here is my second tip, which is just as important. Try to have somebody there by your side that will be your biggest advocate. I was feeling progressively worse and was in no condition to have a rational conversation with the medical staff and the moment Angela saw me in that condition, she grabbed everyone’s ear she could find to get me a private room. They couldn’t even finish telling Angela how much extra it would cost before she agreed – just get me in a private room.
I have no idea if I picked something up from my “roommate”, or the lack of sleep contributed to my declining health but by the time I got to my private room the medical staff was very concerned with my rising fever and overall state of health. Due to the nature of the procedure, they wanted to rule out any chance that I had picked up an infection. So the next few days I was confined to my hospital bed, watching TV, reading, sleeping…a few times I found the energy to get up and walk the floor.
The nights all kind of run together now, but they were the worst. Being with my “Law & Order” friend was bad enough but even when I had my private room I still had plenty of visitors during the night to take blood and more – I even had an ultrasound! They’d knock twice and then open the door…this really wore me down. By the fourth day, Angela and I couldn’t take it anymore. We had been requesting to check out and hadn’t been successful. I never knew that I’d have to work so hard to get out of a hospital! I don’t know what I would have done without Angela; I think I’d still be on that hospital bed. Again, she was borrowing the ear of everyone she could find. We didn’t know a lot more than when I was admitted. Apparently I might have Crohn’s but my pains had mostly gone away and my fever subsided so we were anxious to just get home.
By October, the diagnosis was Crohn’s and in my mind that explained a lot of the mysteries that we had encountered over the years. I read quite a bit about it, educating myself to explain it to others. I went back to work, went back to my normal life of being a father, husband, professional and student. I would meet with my GI doctor frequently as we attempted to verify the original diagnosis. I had a variety of tests, some of which…well, let’s just say I saw the future and I’m not looking forward to entering my 50s. Unfortunately, I got to experience this annual screening test about twenty years early. I also had some unique experiences; in one procedure, a capsule endoscopy, I swallowed what is basically a miniature camera and it recorded images throughout my digestive tract that was being recorded on a CD, which was attached to me in an overall-esque outfit. Yes, I took the day off work for that one!
(Looking good, Wentink! Angela never got to personally witness me in this contraption so I had to capture the moment - why give jewelry for our next anniversary when I can just frame this picture!?)
Nothing ever came back that said, yes it is definitely Crohn’s, and it doesn’t work like that, anyway. The pain in my abdomen continued but it was bearable now and living with it just became part of my daily routine. Eventually, I started taking medicine for Crohn’s – of course, it wasn’t the “magic pill” that I was hoping for. It was a pill. But eight of them…and they were huge! I took four in the morning and four at night and I could drink a gallon of water and it wouldn’t have made it any less uncomfortable to get them down. I was desperately looking for answers and wanted to move on so if this is what it took, then bring it on. The pain wasn’t as constant so there was hope that the treatment was working. The holidays came and then we began 2008 cautiously optimistic that most of my medical mysteries had been solved so I could spend more time with my family and friends and much less time being poked and prodded.