It's been almost a year now, since I was diagnosed with ulcerative colitis as a 25-year-old. I spent the remainder of those few summer nights we get here in Boston, in a hospital bed. How crappy (yes, pun intended).
Over the past year, I've had a lot of ups and downs when it comes to my UC; I've felt great, I've felt terrible, I've been on various medications, and had a few colonoscopies. Not the average life of a 20-something. And that's the hardest part. I've learned a lot in the past year, not only about myself and my body, but also about how to manage my day-to-day life, and keep on living it. I think about it a lot, I try to think why, and how. Well, if you have UC, or Crohn's Disease, you know that there are no answers to this. There is no cause, and there is no cure. There are a few things that are said to trigger a flare, such as stress and certain foods, but there's no knowing when a flare is going to come, how serious it will be or how long it will last.
Thinking back to last August, and those three days of laying in the fetal position in my bed without eating or drinking anything at all, and not having the energy to sit up or even open my eyes, scares me. How could I have been so sick? I had been having symptoms for over a year, but I just kept ignoring them, thinking it'll get better on its own. Thankfully, my boyfriend finally talked me into bringing me to the ER, and I happened to live just a few miles from one of the best hospitals in the world -- Massachusetts General Hospital. I (literally) owe them my life. When I showed up there, they explained to me that my body had entered a defensive mode: it would not let anything in, or anything out. Because of this, my veins became so frail that they had the hardest time taking any blood work, I was severely dehydrated, my iron levels were dangerously low, and my blood pressure too high. I guess that's what happens when you have a flare - it throws everything off. Just about two weeks later, I left the hospital happy as can be - with an ice cream cone in hand, how amazing that is that they fixed me. I'll never forget the day I left the hospital and how on-top-of-the-world I felt, just to be alive and to be able to be out, even though I had bruises all over me from daily blood work, and was on a high dose of steroids for the next few months. I often try to think back to that day, and remind myself how amazing life is. Every time I am on Storrow Drive, and I pass the soccer field that I once sat for two weeks staring at, depressed, and jealous of the people running around out there, I'm reminded of just how lucky I am.
Not all days have been good days since then, in fact, there's been a lot of bad days. Through all of this, I have learned a lot about how to deal with myself and live every day having UC, often feeling sick.
Trust me, I know what it's like to walk around like a hunchback because your stomach pains are so bad that you can't stand up straight; have such overwhelming fatigue that you think you could actually sleep for three days straight, and still wake up tired; people assuming you must be gluten-free, or diary-free or something-free; sitting in the bathroom for over an hour and just crying. It sucks. There's no easier way to put it. But it is what it is, and we're the chosen ones who have to live with it. I have some tips below, that I've found necessary for living with UC each day. I hope remission finds you!
You have to learn to laugh at yourself. I grew up in a household where I learned great manners, I didn't curse, I said "please" and "thank you," and I never mentioned the word "poop." Well, now that word is in my daily vocabulary. Let me tell you, UC is embarrassing. I had a hard time dealing with the fact that I had to talk about this word, and I also had a hard time admitting to the people in my life what this was that I was diagnosed with. I had to talk to family, friends, doctors, nurses, and my boyfriend, about things that I felt so uncomfortable talking about. Now, I'm so used to talking about it that I often forget that it is considered "gross" to some people. If you have UC, you know it comes with embarrassing moments, and you need to be able to laugh, rather than feel uncomfortable.
You need someone to be able to relate to you. I have two people in my life that I'm very close with who also have the same disease. I can't even explain how helpful it has been to be able to talk to other people who go through the same thing as you, has experienced all of the pains (and embarrassments) you have, and be able to talk about different medications with. It definitely helps to have someone you can laugh about it with, and send them cartoons that say something such as: "Enema expert? You bet your ass!"
You need a support system. Beyond the few that will be able to relate to you, you need a support system, built of family and friends whom you can confide in. You need a core group of people who love you, and understand that even though you don't look sick, you may really be having a pretty bad day. I've texted my mom messages at 6AM that are definitely TMI, especially that early in the morning, but I know she understands, and would do anything to help make me feel better, even simply a nice text message back. I tell my boyfriend pretty often that "I'm really not feeling well today," and I can't imagine how annoying that gets, but he never makes me feel like I should stop saying it. It helps an enormous amount to have people around you, who love you, and who will let you talk when you need to complain, and just give you a hug, when that's all you need. I think one of the worst parts of having UC, is letting people down when you have to cancel plans, and just hoping they'll understand. This is where that strong support system comes in; your core group of family and friends has to understand that sometimes, you might have to back out of some plans in the last minute.
Listen to your body. It will tell you when it needs attention. That's where I went wrong the first time. I am here to tell you from experience, if your body is telling you it needs attention, and believe me -- it will tell you -- listen to it the first time. Do not go months without the proper treatment for yourself and end up making your situation much worse down the road. Avoiding your doctor, because you have an important event coming up and don't want to get put back on Prednisone, is probably not the best decision. Meetings, friends, events, the gym, etc. will still be there once you're out of the doctor and feeling well. Believe me - nothing is more important than your health.
And finally, always remember -- you are not alone.