Let me just preface this also by saying that everyone with UC or Crohns is different. This is just what had/has been going on with me. And also let me say, that I don't experience this stuff all day every day. It comes and goes. Sometimes I can go a year or two without any flare-ups, and sometimes just months in between. Some flare-ups are mild and some are pretty bad. Unfortunately, my last two flare-ups were close together and two of my worst.
The thing is though, that nobody really quite understands what it is unless they have it. I have really great, understanding friends that helped me out the past few weeks when I wasn't feeling well and they listened to me complain and complain about my stomachaches, diarrhea, and fatigue. But until you really experience it, its hard to really know what its all about. So I am going to fill you in a little with what I had been going through the last month and stuff I want you to know.
1. I know my body. I can feel when a flare is coming. I will spare you the details but I know my colon and my bowels well enough before the cramping and bleeding starts to know its-a-coming. It's all about consistency. If you catch my drift.
When I have a flare-up, it really affects my day-to-day life. I really don't go anywhere in public unless I know where the bathroom is or if I can get there quick enough and there won't be a line. I won't eat out at restaurants with friends because I am never sure I will make it home in time to poop. And if its really bad, I won't eat at work all day for fear of shitting myself. Yes, this is a real legit fear. And yes, I do keep extra underwear and extra pants in my desk.
2. If I say I don't feel well, please believe me. Even if it goes on for days, or even weeks. I know it sounds weird that I haven't felt well for a while now, but its true. Sometimes I fear that people don't believe me when I say I don't feel good again. That they are like "How can she be sick again? She must be depressed because she never feels good." I get self-conscious about this too but it is what it is and I am letting you know that yes, I don't feel well. Again. Still. And if you really don't believe me, come over at night and look at the thermometer because I have a fever every night as well. It sucks.
3. Pooping all the time is exhausting and draining. Especially when you are bleeding. When you are pooping about 10-15 times a day and at least 5-8 times in the middle of the night, it takes a lot out of you. Physically and mentally. And this isn't just a normal poop. This is a writhing-in-pain, takes everything out of me bloody diarrhea. Yep. Sorry. When I was really sick, I tried to leave my apartment a few times in my very sick 4 day span and it was difficult. If I was getting ready to go across the street to get a Gatorade (to rehydrate naturally), it sometimes took me three tries. I would get ready to go, have to use the bathroom which would take a good ten to fifteen minutes, then I would have to crawl back into bed afterwards because it took so much out of me. And this happened multiple times. This is why I really didn't see the light of day or breathe actual fresh air until I dragged myself to the ER.
4. The pain is sometimes so intense that it feels like I am being stabbed and someone is just rotating the knife. The good thing is that it is not constant all day. It just comes on randomly, lasts a few minutes then goes away for a little while. When this cramping is occurring, it hurts to stand up straight and I get the chills. I sometimes even have to do my self-taught lamaze breathing. No joke. One positive that I have taken from this is that when I am ready to have a baby, my pain threshold will be A-okay. It will be like a little pin prick. No biggie. So thanks Colitis for that. I think.
5. Prednisone sucks! Wait, prednisone is awesome. The drug is a miracle and works wonders during a flare-up, but the side effects suck. They are different for everyone but for me I get terrible night sweats, crying spells, moon-face, sleepless nights, and a little roid rage.
When I say terrible night sweats, I mean sweat through my pajamas, sheets, AND comforter. And through my pillow cases to my pillows. When I wake up in the middle of the night drenched, I need to change my pjs and get back into my soaking wet bed. Not fun at all. And for someone who hates to leave her apartment in the morning without making her bed, this just adds to the disorder of my day. But how else am I suppose to let my bed dry?
And also for someone who goes to bed early (usually between 9-10. Yes I know what a loser I am but I am an early morning runner), this whole not-sleeping thing frustrates the hell out of me. Five hours compared to my usual 8-10 hours affects me greatly and puts me in a foul mood. And the whole not being able to work out because I have no energy from pooping adds to that.
I must say though after being on Prednisone now for almost two weeks, I feel as good as I have in over a month and I am finally getting back to my old self. Hooray for solid poop! Yay to no cramping and bleeding. I even worked out this weekend. After almost five weeks of no physical activity, I actually went for a run one day and used the elliptical another day. Baby steps. But steps in the right direction. My legs are super sore and I feel like I ran a marathon but I am loving this pain right now. It's a good pain. To me its a sign of healing and getting stronger. I can only hope that this improvement continues, my body continues to get stronger, and I remain healthy.