There’s a lot of shame that goes into that. Leaving it there.
I left a big plastic bowl of vomit in a parking lot. What a life. But that is my life. The part of my life that doesn’t get shared on Instagram or in the posts on this website. It’s just my real, disgusting, difficult day-to-day.
Sadly that bowl of puke wasn’t the lowest point of my year and not near as difficult of a day as most of the days I’ve had…
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I don’t want anyone here but I am not brave enough to ask you to go home and to stop staying with me every night because I am sick and I want to be sick by myself. I don’t know how many times I can ask you to leave and go sit in the hallway or walk around while I use the bathroom in my small dorm room because I don’t want you to hear me. You do it for me but I know you hate it. After the 15th time in a row that I ask you to step outside I know that you’re angry…
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I have perfected the art of doing things while smiling, while using a tone of voice so energetic you’d never know I was suffering. I will laugh and smile you into thinking I am doing well because who really wants to hear the truth?
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Everything felt different after coming home. I was different. Six months is a long time but in a way it’s also not very much time at all. Not enough time to wrap your head around an ostomy, a J-pouch, what surgery does, and everything else that had happened. So while my hospitalization felt like it was forever, in the grand scheme of things…
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At this point I was no longer living. I use the word living differently than meaning to be alive. Living to me is something more than breathing air in and out. It is more than just existing. Living requires quality of life. I was not living back then, I was just alive…
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When I tell people about the physical things I have gone through they are shocked. The blood transfusions, the intravenous feedings, the surgeries, the hospitalizations, and so many other things about it all seem brutal, and they are; but the physical things for me are so much easier than what the disease has actually done to me as a person…
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IT WAS SNOWING, THERE WERE PEOPLE OUT THERE, THIS WAS LIFE. IT WAS GOING ON WITHOUT ME ALL THIS TIME WHILE I HAD BEEN IN THAT BUILDING.
People had been shopping, they already purchased their Christmas gifts, they’ve been doing things and my life had been on pause since July. That felt strange. It felt strange that I had entered the hospital in early July when it was summer and I was leaving when it was snowing. How did this happen? How was this my life? How did six months go by?
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BEEP.
BEEP.
BEEP.
BEEP!
Do you hear that?
Of course you do.
Just when you’re drifting off to sleep your IV pump or someone else’s starts beeping. If not that then it’s noisy staff members in the hallway just outside your room, someone coming in to take your vitals, and then an hour later someone else…
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So food. We all need it to survive, yes?
But what happens when you have a disease that attacks your digestive system creating bleeding open wounds (ulcers) and damaging inflammation in any or all of the following: your mouth, esophagus, stomach, small intestine, colon, and rectum (or just your colon and rectum if you have UC)?
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Because I have seen pain I can barely understand splayed
on the faces of my sisters.
Because I have seen them fight with courage.
Because sometimes it’s so much
easier to give up;
because medicines stop working and our
bodies get tired and it’s
so. hard. to go forward; so hard…
I’m sure when I had my J-pouch surgery I was put into positions I really don’t want to think about and who wants their surgeon looking at a hairy butt crack (not that mine is hairy, but yours could be. I wont judge). This hairy ass could affect their work if all they can think about is how hairy it is, I’ve seen Grey’s Anatomy!
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I was angry.
Angry that I am a good person and I became sick. Why me? Angry that my friends were out living their lives and finishing up school and I wasn’t. Angry that this was…
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“I was crapping my pants.
Crapping my pants!
Every night. Do you know how scary that is (yeah, you probably do)? To wonder if you’re ever going to be able to have control over your bowels again. What went through my mind… how will I date someone? How will I sleep next to someone if I am always having accidents? How will anyone…
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As you lose your independence and ability to do things your family has to step in to help out. This could cause you to feel anger, anxiety, helplessness, and depression. It is also very likely to have feelings of guilt. Most of us feel guilt.
Guilt that we are not able to…
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I made a decision right then and there to have my friend drive me to the ER of a different hospital and do you know what!?
All it took was a scope and there it was: Crohn’s disease throughout my…
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What if you have to go to the bathroom, come back out, and immediately have to go to the bathroom again? What if you just keep having to go to the bathroom? Over and over again. I mean, that’s pretty much what it’s been like lately for you. Surely they’ll never want you back in their house. No friends for you! Friendless forever; that’s your middle name.
What the hell are you going to do if the toilet…
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It’s easy to feel unattractive.
It’s easy to lose who you are.
It’s easy to start feeling worthless,
when you have IBD…
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Part of grieving the loss of my colon was thinking about how I would never be a “normal” person ever again. My body was going to look and work differently from now on. There was no going back and everything felt very unfair. I was already isolated because I was in the hospital for 6 months and before that had been extremely sick the year leading up to my surgeries which resulted in me having to leave school and lose my job. After my surgeries I isolated myself even more by shutting down and pushing everyone away. There was a point that my depression…
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