I figure that it has almost been two months since I went down for the count and ended up in the hospital, so I feel it is only appropriate to give a small update on where I am now. It is still a little surreal to me to look back to the end of July (and even before that, when my flare was really starting to kick off) and think about the events that unfolded. If I am being honest, I had always read stories of people being hospitalized for ulcerative colitis and I always thought "well, that will never be me so I have nothing to worry about." Yet, it happened and in the most humbling way, as things tend to happen. Yet, it also brings to mind how easy it is to pass off the seriousness of a condition you may have with that simple thought of "it won't happen to me" or "it's rare for people to die from this, so I'm fine." Even worse is the thought that you can tough it out, and this is the one I'm most guilty of. I must say, I've learned (I think) that it is okay to seek help every once and a while. Sometimes you need to go to the doctor and advocate that you don't feel well. That it isn't a matter of pushing through it another week and re-evaluating. Sometimes you just need that boost from medication to get you back to a good spot.
The irony of it all is that I am often talking about this "tough it out" attitude through my PhD work. My PhD work focuses on homeless female Veterans, and often, one of the big issues when talking about homeless Veterans in general is that while in the military, these individuals learn how to tackle problems on their own. They learn that between themselves and their unit, they can handle tough situations. This is an excellent skill to have while you are in the military. You want soldiers to be able to continue function if/when cut off from help/supplies or are in a very difficult situation. However, the disconnect here is when those members leave the military and start encountering adversity outside of the military institution. Of course, this doesn't happen in all cases, but then again, the same applies to illness. There are absolutely times where these skills are important and toughing it out and being self-sufficient are high level skills. For this, think about the job market. Many employers are happy to employ Veterans post-military exactly because of these dependable qualities. However, there is a dark side. There are times, which in my opinion are usually within the range of an outlier (not common), where a situation can deteriorate for a multitude of reasons in which that Veteran may need help. Yet, training kicks in. Help is not sought out and the situation deteriorates further. Eventually, that Veteran can find themselves homeless, despite thinking they can do it on their own. The situation had just surpassed the point in which that Veteran and their skills could solve it on their own. In similar fashion, the same occurs with disease. In my case, my flare had gotten so bad that no matter how cleanly I ate or how many workout sessions/meditation I did, I was passed the point of complementary therapies and I needed some stronger help.
Here I am, almost two months later, and almost back to my normal self... almost. It hasn't been without it's vast amount of challenges and I think that was the most unexpected part. These challenges were all new challenges despite having previously experienced a multi-year flare where I thought I had experienced it all. I'd faced pain before, inconvenience of being chained to a washroom. Yes, I'd even had incidences in public that required a wardrobe change. All these things are pretty normal to living with colitis, I'd say. What I hadn't experienced before, specifically regarding recovery, was the fear of leaving the hospital, reintroducing foods, the fatigue (much different than any fatigue I had felt before), and the very slow crawl towards normal.
With my first major flare, it had gone on for so long that it had become my new normal. When I was put on my first biologic immunosuppressant, I was naïve to the whole discussion of medication efficacy. Both of those things were untrue this time. That meant, for the first few weeks at least, I had to fight back against a few mental and physical struggles. Physically, there was the constant thought of "Am I improving?" The fear of ending up back in that ER had me stressing every day, overanalyzing every stomach pain or trip to the bathroom. Is it going in the right direction? Do I call the doctor today? I had to really focus on the small improvements. Nothing magically was going to happen overnight and I was told that I should see some improvement by Thanksgiving. So, the focus was on the little victories every day.
On top of this, the thought of whether my new medication was going to work or not was on my mind. I had officially failed a biologic, which meant it was more likely I would fail another one. I had decided, with the help of my wife, to go on a medication that targeted a different inflammatory pathway. Theoretically, this should give me a better chance of success. However, as I touched on in the last article, I had dove head first into the research and read all I could get my hands on. Would I be in the 20% that saw remission in the first 8 weeks? I doubted it, but maybe if I remained hopeful it would materialize. Would I be in the roughly 70% that saw improvement in 40-ish weeks on the medication? That seemed more hopeful, but I couldn't help but think 30% was a significant chance of no improvement. Every day for probably the first four weeks I had thought on this. At the end of the day, I had to trust it was going to work, and if it didn't, it wasn't my only option. All I could do, all I could control (which is what I should've been focusing on the whole time) was maintaining as healthy a routine as possible. I needed a lot of rest and sleep, avoid alcohol and fast food, and eat plenty of good food to support my recovery. Also, my goal was to get back to at least working out and lifting weights. I knew Jiu Jitsu wasn't in the cards until Thanksgiving most likely, so the least I could do was lift.
Eating food, after the first few days, became easier. It felt like all I was doing was eating. Every two hours I would be hungry, so every two hours I ate. It was a complete reversal to before the hospital where I maybe was eating two snack-sized meals a day. Eventually, I got curious and started tracking what I was eating. I also did this in the interest of my aspirations to bodybuild and gain muscle mass. It turns out, and this will not be impressive to those in the bodybuilding community but for a 155lbs male fresh off a flare-up I was surprised, I was eating anywhere from 3,000 to 3,500 calories a day. I have since maintained roughly 3,000 cals a day and I am up about 10lbs from leaving the hospital with minimal body fat gain. I must say, I'm pretty happy about that.
Other than a few areas, things have returned to normal. I am back in PhD classes this semester, which had it's own challenges with the whole flare up episode, but I'll elaborate on that later on down the road. Eating, aside from ensuring I eat a ton more than usual (about 3,200 cals a day for the whole bodybuilding thing), has normalized. I guess the difference here though is that I've also massively reduced my caffeine intake. In the month and a half since the hospital, I've had four, maybe five cups of coffee and I feel better that way. I'm slowly more comfortable with being out of the house for longer periods of time. All in all, I am happy with the progress I've made and I hope to continue this trend. Of course, it can reverse at any time so I can't let my guard down but if I keep taking it a day at a time and focusing on doing the right things (eating well, exercising, stress management), I hope I can stay on this positive direction. I mean, it's been so positive that I even went back to train a session of Jiu Jitsu the other day, something I wasn't expecting to do for a few more months! It has been a positive change from the last few months and I hope this trajectory continues.
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