For those of you who don't know what Crohn's disease ishereis a great place to start. Once you understand what it is, it’s also important to understand that everyone with an IBD will have different symptoms, triggers, coping methods and so on. It's quite the interesting disease because of how differently it can affect people.
For me personally a Crohn's disease flare, this one anyways, manifests itself in a few ways. Since my body is literally fighting itself I have constant exhaustion that makes me feel weak almost all the time. I throw up here and there from persistent nausea. I tend to lose a lot of blood in my BM’s. I have very intense cramps and bloating in my abdomen ranging on the pain scale from manageable to excruciating. I also have regular trips to the bathroom 10+ times a day with extreme urgency. These are all symptoms most IBD sufferers know too well.
Like you can imagine, it becomes very life altering to deal with a flare. Some individuals find themselves in a constant state of flare-up. Crohn's has no rhyme or reason to its madness as you’re probably learning by now. They don’t know causes or cures (and don’t tell me XYZ diet is going to change that, but we will get to that later).
This particular flare came at a very high stress but successful time in my life (stress can be a huge trigger). I was a full time student at the University of Utah in my final year, I had an awesome paid internship doing health and fitness testing, and I was, and still am, running my own business-- I’m completely dependent on being self employed. Since I've missed so much school I have recently had to face the reality that medically withdrawing this semester (which puts me a year behind due to my specific program) was my only real option. I also have had to step away from my incredible internship opportunity as well because I cannot be as present as needed. These two huge parts of my life had to be put on standby until my health clears and in order to stay on top of my business. I would be lying if I told you I wasn't completely devastated. I had worked so hard to get into the position I have been in and it was perfect. I could cry and complain and stress but that's not about to happen... okay I lied there were a lot of tears at first. However it's not going to keep me down. I'm taking all this new extra time to focus on my company 110%, right after my health that is. Not having to worry about being in school has pushed me to set some big goals including getting around to long overdue projects. This will be the first time that I haven’t had to juggle work, school, training, and a normal life. I’m honestly kind of excited for this new opportunity that arose out of unfortunate circumstances.
As far as what is going to happen moving forward with my Crohn’s, it is much harder to say than where I’m going with my business. Some of the blood work that was done when I was hospitalized (October 1st-6th) revealed that I have created antibodies to the last medication that got me into remission 6 years ago, Humira. I basically had tried using every drug leading up to that and it was my last option at that point. Thankfully, at that time, it worked. This time not so much. My gastroenterologist has likened trying to find the right medication for someone with Crohns, to throwing darts at a dartboard blindfolded. Comforting I know. So these next few weeks to months will be a matter of finding what will work and hoping the flare goes down. I’m managing until then with high doses of Prednisone, anti nausea medication, a GI muscle relaxer of sorts, and pain medication.
This is the point where a lot of people start chiming in with XYZ diet or this magic pill or that crazy therapy cured their great aunts second cousin. I think you get the point. If I had a dollar for everyone who offered me diet advice or miracle pills I could probably retire. The truth is anyone with IBD or any chronic illness has probably exhausted all their options at least more than once. When I was first dealing with my problems at age 9 my mom tried everything she possible could to help me; lots of miracle pills and powders (bottles that cost $400 each) that ultimately had no effect on my symptoms or the state of the disease and made $10k disappear in a big hurry. I remember being on herbal pills and medications taking up to 19 pills 3 times a day with very little relief. Not too mention that you are fortunate if you actually can keep any of the medications down. I promise you the last thing someone with a chronic condition wants to hear is that there is another pill they can try. Even though it comes with good intentions sometimes it is better left alone. The same thing goes for diet. The amount of people that are like “OMG no wonder you feel like crap look what you’re eating” is astounding. Tell that to someone who not only has thrown up every meal for weeks at a time but also throws up stomach bile throughout the night, throws up pills when taken with water, has eaten baby food for every meal, and has still had no relief, I’m sure they wont be to pleased to hear it. Even with good intentions it becomes frustrating that everyone thinks they can change the state of your health. For some people a simple diet is enough to help their flares calm down. For others a feeding tube is their only option. For me I do fine with ‘junk food’ because processed foods seem to go through a lot easier. If you were to give me a raw vegan paleo salad I would be in incredible pain. I cannot handle skins or seeds of most fruits and veggies; I can’t have nuts or beans; and salad might as well be glass. I can’t even think about popcorn or corn on the cob, and don’t get me started on high fiber foods either, let alone red meats or milk. The list can go on and get a bit more detailed for everyone with an IBD. The point is, after dealing with daily pain and discomfort for months or years at a time, someone knows their body pretty well. I just urge you to think about that next time you want to help. We know you come from a good place but we don’t want to hear it again.
The last thing I want to touch on is how to understand someone with a chronic illness and how to help. Regardless of the disease, anyone who may suffer from constant fatigue isn’t going to be able to keep up with day-to-day things like you can or even like they used to. I know personally I’ll have days where I’m okay and can function pretty well then I will have days where no amount of pain killers will get me out of bed. Even when having a good day, you know that it can change at any time. Plans may have to be canceled last minute, meeting times may be missed due to an unforeseen bathroom trip, a date may be cut short due to pain. There really are many possibilities that could lead to a change of plans. The best thing for you to do is just offer support. Asking someone if they are okay is only going to go so far. I’m always “okay” when someone asks, maybe on really bad days I will not be as okay and you will know. If you ask if I’m okay I will say yes even if I practically feel like dying on the inside because, lets face it, anyone with IBD tries to put on a brave face. Those who suffer on a daily basis are always going to be just “okay”. The best assistance you can give anyone suffering is to ask what you can do to help-- because we could use all the help we can get.