So today someone asked me, ‘What’s it really like to live with that?’ And by ‘that’ they meant Crohn’s Disease. In almost two years with this diagnosis, no one has ever explicitly asked that question(ones like it of course, but never so “to the point”), so I was sort of thrown for a loop as to how to answer. As such, I replied like I usually do to questions of the same nature with a simple, ‘…it sucks.’ That’s quite often a phrase that will inhibit any further prying by the interested party. Most people aren’t really interested in the fine details of what its like to live with Crohn’s, so a simple phrase such as the aforementioned will satiate their inquiring minds.
Later today I reflected on the exchange, and all the hundreds of exchanges similar to it over the past two years. I then thought, “Wow, why SHOULDN’T they know what its really like?” Of course one can read online about symptoms and surgeries classic to IBD, but a bulleted symptom list doesn’t even begin to scratch the surface of what its really like to live with CD on a daily basis. If you are a person with IBD you know this to be true. You also know that no one we encounter can truly understand what its like to live with IBD unless he or she is a patient themselves. However, I think we (I know I’m not the only one who 9x/10 gives a response as I did today) can do a better job of giving friends, family, coworkers, and interested strangers a glimpse into our everyday lives. We don’t want to overshare of course, but I feel often times we excessively sugarcoat. This doesn’t serve well to the whole ‘spreading awareness’ thing.
A phrase that I use very often with my docs when they shake their heads in disbelief at my ever-changing condition is, “Everyday is a new adventure.” So, what better way to explain what its really like than to give a play-by-play of an ordinary but very adventurous day earlier this week? I’m starting with the night before.
Well, okay, its 10PM and I forgot to finish my online physics homework because I was too busy organizing my medicine drawer (yes, I have a medicine DRAWER). Its so organized now. Knowing where everything is at and having my pill organizers freshly stocked is so gratifying. I’m reminded that “its the little things in life.” I found four lonely Zofran and one Vicodin at the bottom just chilling. Not sure how long they’ve been there, but they’re getting thrown out. Now to finish that physics homework. Got a 10/10. By the time I’m finished its midnight and I still have a few things on my list for the day. Lord knows I’m not going to sleep anytime soon. I’ve been a chronic insomniac ever since I was on Prednisone two years ago when I first got sick. I just can’t shake the habit. I check off a few more ‘to-dos’ before going on a run at about 1AM. Running hurts my body, but its an escape. Especially at night. I am completely alone with my thoughts. No one is outside. Fifth Avenue is deserted. Perfection! I hit play on my iPod and away I go…
Upon returning home I am reminded that I haven’t washed my hair in four days. I’m also sweaty and gross. I need a shower. I have been trying not to wash it as much because then it doesn’t fall out. I have a lot of hair to spare though, so to most its not noticeable. Nah. I’ll just rinse off and get another shower in the morning. After my rinse, its THAT time-pajama time (its also a little past 3AM). Hallelujah. Today was a long day-was on campus from 8AM to 8:30PM. Time to sleep, or at least try to. I think I finally fell asleep around 5AM, at least that’s the last time I checked the clock on my phone.
Wow. That was scary. I’ve been having medical/surgery dreams lately, most likely due to the fact that I have a major surgery creeping up on me. This was probably the worst so far. Honestly though I don’t have conscious negative thoughts about the surgery or its outcome. I have one of the best surgeons at UPMC. Even still, I thought about it for a while before I went back to sleep for a little bit. I had to be up for a 9AM class. Before I showered I had all good intentions of doing my hair nicely. But my arms are tired and achy from washing my hair so I decide just to blow-dry it for a few minutes-enough that it won’t freeze when I go outside but not enough to completely tire me out. I used to not go out of the house without my hair straightened. That’s not one of my main priorities these days, so my natural waves will have to suffice. I’m sitting through my class trying to stay awake. I’m like a bobble-head; almost falling asleep every few seconds. I’m tired yes, but even when I am exhausted I don’t usually have to struggle to stay awake. If you’ve ever seen the movie Madeline, I’m having a moment similar to when Miss Clavel is spontaneously awoken from sleep and states, “Something is not right.” She was right. Madeline was suffering from acute appendicitis. I am also right in having that thought. I haven’t had my morning coffee. How I could miss such a crucial step to my morning routine is beyond me, but I’ll take a wild guess and blame it on sleep deprivation. Lets take a moment and thank God for Starbucks. I bought my coffee. A caramel macchiato, triple-shotted. For the un-caffeinated population, this means that I added two shots of espresso to the one that was already in the classic drink. Needless to say, after the caffeine started to work its magic, I was feeling much less sleepy. On my walk over to the VIP Center I, for a moment, contemplated whether this was a bad decision or not as I had to travel to Children’s Hospital. We all know coffee works wonders as a bowel stimulant, however that’s not an effect that I need. My bowels do that all on their own. Coffee sometimes makes things worse, but sometimes not. Would I have to go to the bathroom while on the shuttle? Dang. I don’t have my emergency kit with me. Oh well. Shit happens. Literally. But it washes. I go back to periodically sipping on that liquid heaven. Seriously. I love coffee.
(This is supposed to a strict play-by-play, but my next venture needs some context. I recently joined the research team of a renowned psychiatrist that specializes in IBD and other GI diseases here at the UPMC IBD Center. So exciting. Wonderful opportunity. Couldn’t be more ecstatic. And grateful. She works with both children and adult patients, so that is why I am at CHP today.) So, today is a research day. I meet with the doctor’s research assistant at the VIP Center and then we head over to Children’s Hospital of Pittsburgh. On the shuttle over, we talk about the Super Bowl and all the wonderful food that that day brings. I think of how much I would love to have buffalo chicken dip. And for the rest of the bus ride, I’m trying to rationalize going to the store later and getting the ingredients so I can make some and eat it in the comfort of my own home, with my own bathroom nearby. Would be a deliciously horrible situation though, so I’ll pass.
As I’m entering data and symptoms into the database, I see so many parallels. I know what they are feeling and what their lives are like, and its a bittersweet thought. I wish I could take IBD away from every one of these kids. When I think about them suffering with this disease all I can do is shed a tear. But I know that IBD will make them strong and give their lives so much depth. They will be extraordinary. Let’s face it. Living with IBD? They’re already extraordinary. I was feeling okay in regards to my intestines this morning. Having really no discomfort at all. Then all of a sudden its there. Like a knife stabbing me. I sort of yelp and the psychologist that is working at her desk not far away asks, ‘Is everything okay?’ I can’t really respond adequately as I am in so much pain its difficult to form words. She walks over from her desk and comments on how red my face is. She’s right. I can feel it. My face is so hot and I feel beads of sweat begin to form. This pain is BAD. For about thirty seconds I’m just focusing on my breathing and I try to not make a scene. These people are used to IBD patients. Their level of understanding is at a higher level than that of the general public, and that is incredibly comforting. My pain is beginning to subside. I know what that was. It was something passing through my fistula. Glad its over. This could prove to be an interesting day.
For lunch, regretfully, I decide to get stuffed shells. I love pasta. The sandwich I wanted had seeds in the bread and I can’t chance that with my fistula. As I shovel the shells into my mouth, I make a mental note to take an omeprazole before bed to stop any reflux this sauce may induce. These are delicious. Utterly DELICIOUS. The feta, mozzarella…so yummy. I haven’t ate like this in a while so the last few days of cafeteria food have really been such a treat. You have to pay to gamble, however.
The research assistant, the psychologist and I are eating lunch together. Not too long after I am finished eating I start feeling dizzy. Then the nausea hits. I am a person who loves to be part of conversation. I’m a talker. But when these symptoms start to intensify, I stop participating in the conversation and pick a spot on the filing cabinet opposite me to stare at. This nausea is extremely severe. I will vomit today at some point. My hands start to feel tingly and cold. Then my whole body turns to ice and my vision becomes blurry. That’s something new. As I said above, every day is a new adventure. I thought for a moment I would faint. I have never felt quite like this before. I close my eyes and focus on breathing and avoiding the message my brain is sending to my gastric muscles-to evacuate my lunch. I sit at my desk for 15-20 minutes just trying to feel okay to stand. I don’t want to faint here. That would be embarrassing. I eventually am able to stand without feely dizzy, but the nausea is still there. I quietly make my way to the bathroom as I know what is about to happen. I vomit. Gargle with water. Repeat. I feel a bit better. Less nauseous. I eat some of my pumpkin cake that I had for breakfast to get the taste of vomit out of my mouth. Make another mental note to add a toothbrush/paste to my emergency kit. I don’t think my coworkers know this just happened. This is good. I don’t like being made a fuss over and that may happen if they find out I got sick.
I feel much better by the time I leave the hospital to go home, however I’m very fatigued. Lack of sleep combined with today’s ordeal created a giant urge to curl up under the warm covers of my bed and fall peacefully to sleep. Usually this is where a ‘plot twist’ would occur, but that’s exactly what happened when I got back to my apartment. I was supposed to go grocery shopping and do laundry, but I just can’t. I slept from about 6:30PM to 11:30PM. When I wake up, I know I need to eat something, but I’m not hungry. I decide to have some ginger snaps and two dum dum lollipops. If you know me, you know I love dum dums. They also really help to curb nausea. I’m up for a while. In the wee hours of the morning, I start searching online for the Altoona “Take Steps” web page as I am curious to know if the walk manager has picked a date yet for this year’s event. I’m on the walk planning committee so I think I would be aware of the date if it is picked, but I search anyway. There’s no page for the event as of yet, but I stumble across the blog belonging to the mother of a young girl who melted my heart at last year’s Altoona “Take Steps.” (I was the honored hero at the walk and spoke about my IBD story. The girl told her mom that she wanted to come and say hello to me because she was happy to see that there was someone going through what she was. I had to fight so hard not to burst into tears right then and there, however I cried the whole drive home. I was so honored. Its a moment I will never forget.) She is so young. It breaks my heart and brings me to tears to read what she has been going through recently with her IBD. So brave. We have to be. As I read one particular post, I realize that I was not led to this blog by accident. The mom writes that the girl claims Jeremiah 29:11 as ‘her verse.’ Once again I am reduced to tears as this is also ‘my verse.’ The verse states, “‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.'” These are the words I remember when I reach a breaking point. It doesn’t happen often(maybe 2-3 times per year), but it does happen. It has to happen in order to cope effectively with this disease. You have a ‘momentarily lapse’ as I call it, and you pick yourself back up and move on. Letting emotions flow is a good thing. I ask myself why I didn’t think of ‘my verse’ today during my ‘episode’ after lunch. I realize that even though that part of the day was fairly horrible, it didn’t even come close to breaking my resolve. This makes me laugh. And is also amazing, at least I think so. I’m proud of myself. I fall asleep, only to wake up and start a whole new adventure tomorrow.
If you read that whole thing, congratulations. I thank you for taking the time out of YOUR busy day to read about MY busy day. If you are an IBD patient, I hope I have inspired you to write a piece similar to this, even on a much smaller scale. Let’s get out of the habit of using the ‘easy responses’ to inquiries about our disease and give those around us more information about ourselves. With knowledge (usually) comes increased understanding. If you are someone without IBD, I hope this post has provided you with a better understanding of what its like to live with IBD. Not every day is like this. There are always good and bad days. Described was an ‘IBD day’ if there ever was one. 🙂 Again, thanks for reading. I will leave you with my favorite quote. Hope you all have a wonderful week.
“Search for the seed of good in every adversity. Master that principle and you will own a precious shield that will guard you well through all the darkest valleys you must traverse. Stars may be seen from the bottom of a deep well, when they cannot be discerned from the mountaintop. So you will learn things in adversity that you would never have discovered without trouble. There is always a seed of good. Find it and prosper.” -Og Mandino