The Daily Poop: A Crohn's story
Just another Crohnie girl talking about the unmentionable... that's right. Poop. If you can't handle it, clearly you're reading the wrong blog.
Wednesday, February 19, 2014
Frustrated February
After my last post, I had about one more week of that top-of-the-world feeling before something came to kick me in the butt again (pun intended). Symptoms came suddenly, and then progressed, beginning with an increase in my trips to the bathroom, and the loss of "normal" stools. After two weeks of constant diarrhea five to ten times a day, I finally called me doctor as it was apparent that I didn't simply eat any bad sushi or drink some old milk. I told him about returning to the days of calling the bathroom my office, but was happy that at least I was not experiencing any extreme cramping pain such as before my surgery. He thought maybe I had c-diff, an infection common with people whom had recent bowel surgery. So I sent my stool to a lab where they tested for that and other infections. All came back negative. The next step was to schedule a flex sigmoidoscopy (similar to a colonoscopy, but they don't have the camera travel as far into your colon). I am having this procedure done tomorrow. I also finally found out just how much of my bowel they removed: 13 inches of my colon, which amounts to one third of the colon. I had been lead to believe it was a very small section of diseased colon, maybe 4 inches, so this information was definitely good for me to have!
In the meantime, I have been put back onto prednisone... a sad state as I had just finished tapering off the drug, a process which took a few months. I constantly feel as if someone took a large pile of broken glass and forced it up my rectum, whether I have recently been to the bathroom or not. Going to the bathroom often leads me to tears (which is particularly fun if I'm at work or class). Some stomach cramping has returned, but not nearly to the extent that it pained me before my surgery. Most of these symptoms have been keeping me awake at night, stumbling to the bathroom in the dark wee hours of what was once claimed for sleep.
I'm writing this post to vent to the vast space of the internet, as this recent back-step in my recovery has got me feeling extremely defeated and exhausted. I received a three week glimpse at what it felt like to feel healthy again, and it has been taken out from under me, and I can't help but feel angry. I apologize to those whom have had to interact with me on a daily basis; if I had a chip on my shoulder, this is most likely the underlying reason. At times I have broken down at home, often after a bad trip to the bathroom, as my mind wanders to what the future holds. Surgery was to provide a light in my life and now I can't help but wonder what effects this disease will have on things I want to accomplish.
At the same time, after I have given myself a dose of self-pity, and then a slap across the face for giving myself a dose of self-pity, I must stay optimistic. There could simply be an infection of the surgical site in my intestines, and not recurrent Crohn's inflammation and ulcers. We shall find out tomorrow.
To other crohnies out there: What are your tricks to staying positive?
Wishing everyone happy thoughts and happy bellies.
Sunday, January 12, 2014
One Month Post-Op!
As far as healing goes, it is still a process. My actions remind me of this as the days go on. I tried a full day of errands, and the lifting of groceries, and the twisting of my body getting in and out of the car many times, made me feel my stomach pulling by the end of the day. I've cheated on the "no exercise besides walking" order and gone skiing twice. For those reading this who don't know me personally, I've been skiing since I was four years old, and raced from age ten until the end of undergrad, so putting skis on my feet is like putting on a pair of sneakers and going for a run. I trust myself enough to be able to ski in a way that puts the least amount of pressure on my ab muscles (which means forcing myself to not ski well, but if that's what it takes). I also was very honest with how I was feeling, and only completed 2 or 3 runs at a time before taking a break in the lodge, and each day I went I only did about 6 runs total. So for all you nurses, doctors, moms out there, I took it very cautiously even though I am rebelling against doctor's suggestions. Ironically enough, the most pain I've felt in the surgical area is occurring today, as I'm writing this! What did I do? I played a card game... If you've played Cards Against Humanity then you know the uncontrollable laughter that ensues (especially after a couple glasses of wine). Last night I could tell that my stomach was feeling sore from the laughing, and this morning it only hurt worse! I also had a few good sneezes this morning that made me feel like I snapped something further! Luckily for me I get to see my surgeon tomorrow morning for my follow up appointment. (We'll see what he thinks about skiing!)
On a side note, I recently dug out of my jewelry box a bracelet that I had received from a friend when I graduated high school. It is the start of one of those Pandora charm bracelets, with one cute little charm on it. Since I received it, I had decided that I didn't really want to have a charm bracelet. I thought the one charm on it was simply and cute looking. But in picking it up again, I decided that after this surgery, and referring to my New Year's post, that now is a good time to start actually adding charms to it in marking accomplishments in my own life journey. So today, I went to the Pandora store and picked out a charm. They don't make charms in the form of colons (I don't understand why that wouldn't be a best seller!), so I had to come up with something a little more metaphorical. I knew I wanted something purple, which is the color of the ribbon for IBD. I also love the motto of a newer Crohn's foundation called The Crohn's Journey Foundation (http://thecrohnsjourneyfoundation.org/) "The IBD movement for compassion, health and love for your insides." The motto is represented by a picture of a heart formed by the small and large intestines, which I also enjoy. So here's my charm, with purple hearts to remind me of my procedure, where I was before, and the goals I have for myself in the future!
Monday, December 30, 2013
New Year, New Crohnie!
I have very much neglected this blog and feel poorly about that, mainly because it helps me to be able to write out my thoughts and to cope with this disease I have been blessed to have. Two posts I had intended on writing would have been: Stress and Crohn's as well as a post about preparing for surgery. Perhaps I will still write those at a later date, but for now I want to talk New Year's resolutions.
For those who actually read this blog or follow me on Twitter, you may or may not have known that I had surgery. If not, then now you know! I went in on December 12 to Massachusetts General hospital for my left colectomy (had a portion of my colon removed on my left side). Everything went as planned and since then I've been living the couch potato life for the most part as I recover. There were some very painful moments in my first week home from the hospital, and I have to thank my dad, sister, friend Jess, and boyfriend for being ready at all hours to help me when needed. One day in particular we learned the power of narcotics making you constipated as I cried and screamed while rock hard bowel movements moved through my recently sliced and sewn colon, scaring my dad and boyfriend in the process. That was a miserable day for certain. But now being a couple of weeks since, I am starting to feel like a real person again, and even better, I can tell how symptom free I am going to feel! And THIS is where my New Year's resolution comes in.
Each year people take the time to focus on things they need to improve, things to work on to make themselves a better version of who they want to be. Lose weight, eat healthier, work out more, be a better friend, significant other, parent. A lot of times resolutions are broken as the year progresses, naturally. A lot of times these resolutions merely add more stress to our lives than bettering them. The year 2013 was both a very good but also very bad year for me. While I had great moments with friends and family, I became the sickest I have ever been since my diagnosis of Crohn's in 2011. Starting in May I became a person whom merely exists: going to work, staying at home, sleeping as much as I could, spending way too much time in the bathroom, and not engaging in activities I love, due to always needing a bathroom. I was in a lot of daily pain, constantly exhausted and forever stressed. In 2011, I graduated college weighing 130 lbs, which was a healthy weight for my size (just to give you perspective). By December of this year I weighed 90 lbs. In 2013 alone I was on a slew of antibiotics multiple times, remicade, methotrexate (pill and shot form), imuran, humira, and cimzia. I feel as if I'm forgetting one to two medications, but you get the idea. Nothing worked, and I kept feeling worse as the months proceeded me. Finally in October, I scheduled myself for surgery. I'm already starting to see that this was the best end of the year decision I could have made. Though it is unknown with Crohn's if having this surgery will help me feel better for months or years, I am grateful to be able to say I feel better for however long I can.
So what is my resolution for 2014? Simple: to live life to the fullest. Crohn's may not be as life threatening as something like cancer, but it has taught me what it is like to be debilitated; to be exhausted and to not live and enjoy as you were once able to, especially being only 24 years old. I plan on spending each moment possible of 2014 running, playing, laughing, loving, EATING, painting, reading, skiing, etc etc etc. I plan on focusing on destressing, as we know stress is not good for us in general, but especially us chronies. The year 2013 has really embedded the classic cliche "life is too short" and I'm ok with saying that because it's true.
I hope everyone out there in the world had a wonderful holiday season for whatever holidays you celebrate. Here's to a new year, and to new chances to live life to the fullest!
Tuesday, July 30, 2013
A Fever A Day: keeps the doctor on speed dial.
For a couple of months now, I've had a miserable amount of fevers. I only began logging them at the begging of July, once I figured out they were going to become a trend, but they began to appear sometime in June. In the two years I've had Crohn's, I've had one fever caused by the disease, and it disappeared with a dose of Tylenol and a treatment of Remicade and was never seen again. The origin of the fevers I've been getting is undetermined. Since April, I've been playing around with med changes. I had switched from Remicade and Imuran to Humira and a low dose pill version of Methotrexate. I was only on Humira until the end of June when a combined effort of my home town GI doctor and my Boston specialist decided my continued symptoms most likely meant that the drug cocktail was not working. It was then that I started on a cocktail of Cimzia and high dose intramuscular injection Methotrexate.
Though I try to have a positive outlook living with Crohn's, these fevers have been crippling at best. They start off as chills, strong chills that cause me to seize like I was sitting naked on an ice bench in an Artic igloo. From there I become achy, my muscles tense up and my joints feel sore. This combination causes extreme lethargy and insanely decreased motivation. Sometimes, at any given point of this succession of symptoms, I don't even have a high temperature. Many times it is hours later, after an ebb and flow of these symptoms, that the thermometer reads somewhere between 99.5 and 102.6 (or something like that). Now, with these symptoms, mix back in my original Crohnie fun of unpredictable urgency, crippling stomach pain, and endless trips to the bathroom, and you have one exhausted human.
So that's where I'm at. I can't say that I've had much of a summer. I had bought a bike in April, excited to try to get back into athlete mode - used it three times. I've been to the beach once, and had to force myself and Devin to leave early in the day due to a fever. (Baking a fever in sandy 90 degree heat was probably not a good idea in the first place, but we love the beach, and my stubbornness to not let my symptoms get the best of me prompted me to go ahead with the plan). I must admit that Dev and I were able to have a fairly successful hike this past weekend, but that was only after two days of sleeping after vomiting and continual fever prevented me from going to work (I am thankful to my boss for making me stay home as it was probably good for me).
The worst part is, that during these past two months, I've had a couple of periods of 3-4 days sans fever, almost like the worlds worst tease, causing me to feel worse the next time one breaks out, frustrated by its appearance. It's hard to admit defeat, and I've never felt that way with Crohn's, but the fevers have really rocked me; making me feel less like myself. I dream of the day that these finally stop, a day when I have energy when I wake up (even if it takes a cup of tea initially), and energy when I get out of work to ride my bike, or take my dog for a walk, or any activity other than resting.
After re-reading this, I apologize for the low demeanor in which I am writing. I have hope in my doctor's plan, so the next time I decide to type out a story, I cross my fingers while promising it will be humorous and light hearted!
Friday, June 7, 2013
Acknowledging Fatigue as a Symptom
Sunday, May 19, 2013
Traveling Crohnie
I've been lucky enough to travel a decent amount in my lifetime so far. I've seen a decent amount of the United States, studied abroad in Malawi, Africa, and been to parts of Europe (Paris, Barcelona, Munich, and most of Italy). You'd think going to a new country would be no problem, except for the fact that I had never traveled with Crohn's Disease.
The last time I'd really taken a trip it was to Italy. It was my graduation gift from my family and we spent ten days touring the country. It was in Rome that I actually started to really feel the effects of what would soon after be diagnosed as Crohn's. In hindsight I could report symptoms that I wasn't really aware I was having a couple months before this trip, but it was during this trip that the debilitating stomach pains and many trips to the bathroom started occurring. My father suggested that I had some GURD going on, or heart burn, or acid reflux. He thought it was probably from being in another country and eating their food, but I reminded him that I had traveled to France, and Spain, and Germany, and Malawi, where I ate mustard greens and nsima (a play dough consistency, tasteless, corn meal product). I never had any of the issues there that I was currently having in Italy. Upon returning to the United States I sought doctors and eventually received by diagnosis.
Now, in planning our trip to Costa Rica, my strategy was completely different than it would have been a couple of years ago. The one thing I was determined about though, was to not let Crohn's take away from my trip, prevent me from doing things, or from going to certain places. This mentality perhaps should have had some consideration, but I'll get to that later.
I was completely prepared, as much as I could have prepared myself. I packed portable heat pads in case of stomach pains. I packed stomach friendly food bars in case Spanish Costa Rica was filled with corn products. I couldn't be prepared for my current medical status. I haven't been feeling my best. Actually, I've been feeling quite shitty if I'm honest. But I wasn't going to cancel my trip.
Our flight left Boston and landed in Miami, where we would board another plane to San Jose. We left home at 3am Boston time, 1am Costa Rica time. I knew we were to arrive in Costa Rica around noon, and had to wait three hours until our ride was picking us up to drive us another four hours to our final destination of Puerto Viejo. What I didn't prepare for was the fever that picked up with about 20 minutes left of our second flight. I was shivering out of control even as we went outside to wait in the 85 degree plus humidity weather. I told myself I just had to wait the three hours until our ride came. I actively kept calm as I didn't want to stress myself out and trigger more symptoms. I made it to 3pm Costa Rica time and our ride had found us, but reported that we were going to have to wait until 3:30 for some lady and a baby (his English was not very good, and my Spanish is equally as bad). Devin an I both started to become frustrated. It was hard to keep calm after being up since the night before and having already waited so long. Long story short, we didn't get to leave the airport until 4:30. I had really wanted to get to our destination before dark but the sun was going to set by the time it was 6:00. Once I was in the van I had calmed some. My fever had dissipated and we were on our way. Devin had also been really stressed and he had never been in a driving scene like Costa Rica (I had, as Malawi was quite similar). So while he fell asleep, I relaxed and enjoyed the trek through the mountains; the scenery was beautiful! I could tell that my stomach was beginning to act up. I was also getting hungry. I had only eaten an egg sandwich in Miami the entire day. I actively calmed myself as we still had quite the drive ahead of us. With about an hour and a half left, Devin woke from his nap and seemed to have calmed, himself. It was then that our driver stopped the van and got out without a single word to us. With the language barrier around us, and no idea where we were, and my stomach really started to act up, I was having difficulty controlling my anxiety. The driver came to the side of the car and told us that someone had died in the road and it would be about an hour until we would be able to move.
I was tired. I had been up for about 18 hours traveling. I was hungry. I was in a new country, in the dark, and in the hands of a man that had earlier appeared to have been lost and could not effectively communicate to us. I had known that there were little to no public restrooms available, but had not expected this occurrence. I had a mental breakdown. My stomach seared in pain, and between that and the stress of everything, I started to cry. I won't even lie about it. In hindsight it's a little embarrassing, but in the moment it felt legit. My crying made my stomach hurt more, and my stomach hurting just added to the anxiety of the moment. There was nothing more I could do but sleep. I laid with my head on Devin's lap and I slept. I woke briefly when we began moving again, but then forced myself into slumber until we finally reached our resort.
Once we arrived, everything fell into place. Our resort was amazing. (Caribe Town Resort, Playa Cocles, Costa Rica). The woman I had been in contact with before our trip, the woman who ran the resort, was just as awesome as she seemed through email. Our bungalow was a comforting retreat. Of course the first thing I did was rush to the bathroom. And we had a great time! The funny thing about the rest of my trip, is that my stomach did better there than it does at home! I couldn't figure it out. I was eating out every day. I was eating a lot of raw, acidic fruit that was always just kind of handed to us, and I was doing active things, such as hiking and zip lining. But alas, there was only one real morning that I felt the need to take things a little slow, and to not eat as much due to pain. Weird, I know. Since I've recently been switched to Humira, I thought maybe it was starting to kick in and work (I'd been on it for about a month). Turns out that wasn't the case, since as soon as I returned to the United States, my flare symptoms returned in full force, and actually slightly worse than they were before I went on my trip.
So I suppose the moral of my trip is: Don't let Crohn's hold you back from fun activities such as swimming, or hiking, or zip lining, but don't put yourself in situations that could easily be problematic, such as four hour car rides in a foreign country with a lack of public bathrooms and English speaking people. Though that first 12 or so hours of my trip was fairly miserable, I would return to Costa Rica, as the people were amazing, the country is beautiful, and there is much more to see and explore there. Perhaps the experience will cause me to plan better on my next trip!
Sunday, April 7, 2013
Trapped in Class
Let's be honest here - my entrance back into a classroom was not un-researched. I read blogs of people dealing with Crohn's in college, funny memoirs of "oops" experiences, and witty agendas geared towards breaking the ice to your professor and/or classmates. I wasn't too worried, just a three hour seminar once a week. Upon entrance to the room I sat myself on the left side (the side where the door was located), though I did not sit immediately next to the door. I took option B of moving a few rows back, just incase I was having an off day and was feeling a little theatrical with my pain and required multiple position changes. I made sure I was near an outlet, not in case my computer needed charging, but in case I was in desperate need of my best friend, the heating pad (because that would be a natural thing to whip out in the middle of a lecture). My point is, I knew what I was getting myself into, and I felt prepared.
It wasn't until this semester of classes, the fourth of being in a classroom since diagnosis, that I had a true, inescapable, painful and awkward moment. What was the situation I didn't prepare for? Forty-five minute presentations...
I just had a final for my class this semester that was a group presentation. There was six of us in the group, and though it was a combined effort, we were individually graded, and all researched our own piece. I gave my ten minute speech second, so was completed early on in the presentation. I then stepped to the side and leaned against the wall with some of my group members while every one else went through their spiels.
It's no secret that stress and anxiety can have an effect on one's body, especially I've found when dealing with Crohn's. If I've had an awfully stressful day, I can predict having a rough night with the stomach, even if I haven't eaten anything dangerous.
Public speaking scares the S!%# out of me. And let's get this straight, I'm twenty-four. It's not like I'm new to school presentations, job interviews, etc. I will say that I used to be worse; I used to panic hours leading to a presentation, and now I only get the feeling once I get talking. I just don't like all eyes on me. Long story short, my nerves were going, so naturally, my stomach followed.
I felt a little pain, but not much. Then my stomach started making awful noises. Noises that from my perspective could have competed with my group member speaking. Though by looking around the room, not many people were looking at me, so that gave me a slight sense of relief, even though as I was standing there, this was happening:
I don't think anyone in my group thought we would take so long in our presentation... they were supposed to be 25 minutes, but we were going a little overboard. As my stomach continued to gurgle and bubble, each minute turned into twenty, and I started to get a little fidgety, especially as the gurgles and bubbles turned into full on explosion of pain. I tried not to be too obvious, but staring at a nearby chair that I could not sit in due to presenting my final project made me feel so helpless! Again, though I only caught a few people glancing at me from time to time, in my mind, I looked like this:
I tried to think of any way to escape the classroom and make a run down the hall. Note: the exit was directly behind the presentation area, but I would have to cross in front of the projector in order to reach the door.
- Harry Potter's invisibility cloak? Maybe... but my bag was so far away.
- Use special mind powers to move quicker than the speed of light, so no one would see me leave? I'm still working out the glitches with this one.
- Place a card board cut out version of myself in front of me and shimmy out behind it? Did not think ahead of time to utilize this plan.
- Simply ditch my presentation for the sake of Crohn's emergency? Psh. This obviously was a dumb idea.
Yes, I can see pushing through a group of people in the middle of their presentation in order to reach the door, but I just couldn't leave my own, it felt wrong.
(I'm sure if I did and I explained to my professor later, who is aware of my condition, that it would have been fine, but in the moment this did not cross my mind). So my nerves from public speaking got to my stomach, my stomach got to my nerves, and round and round we go.... Obviously I made it through the presentation (And got an 'A' I might add!). I'm sure no one really noticed anything, but it felt as if you had a serious eye twitch going while trying to have a really important, deep eye contact conversation with your boss, or someone at a funeral, or something like that.