Nine hours of sleep not enough? How about nine hours plus two naps a day? Nope, still not enough. Fatigue might be the WORST of the Crohn’s symptoms. I can handle lots of poops. I can take meds to help with the pain. There is nothing I can do to help the fatigue.
I struggle walking up the steps to go to the bathroom.
I struggle walking my dog around the block.
I struggle focusing at work and completing my ever-growing gotta get it done list.
I headed to Crossfit on Wednesday knowing it would take everything I had to finish the workout. The workout was a grinder – 5 rounds of 60 double unders, 40 squats and 20 calories on the rower.
I made it through two rounds. TWO rounds. And then I fell apart. Not to the point where I could just take a breather, but almost in tears because I have nothing left to give. You know what happens next. Crying while working out is impossible. Hyperventilation ensues on the row machine. One pull, breath, two pulls, get your crap together woman, one pull, dear god will this be over soon?
Finally I collect myself, only making a fool of myself to the coach, and continue on with the workout. It takes me almost 28 minutes but I finished. And not last, I might add.
Crohn’s may interrupt my life, but it won’t defeat me.
It was a beautiful spring day when the monsters came, their arrival signaling the start to a very long and difficult weekend. With sharpened claws and bared teeth, they slowly started to rip away at my insides – small pokes growing into a full assault until I didn’t I could keep them at bay any longer. Finally, crawling, I made my way into the safe house, happy to see it free of other visitors. With every last ounce of might I could muster, I vanquished the monsters but not before they had left me wounded and defeated, slowing retreating back to the outside world where my stadium seat and husband were waiting.
I’m one of the few lucky patients that rarely experience urgency issues or painful diarrhea associated wtih Crohn’s disease. The unfortunate drawback is that I typically experience symptoms outside of the gut – arthritis pain being the most common. When joint pain is the worst of my problems, I can usually make it through life without many complaints
But lately these monsters have been making more frequent visits into my universe. Their sharp teeth and claws tearing away at my insides creating some of the worst urgency issues I’ve ever experienced with only one possible outcome.
During the game my mind wondered to this latest event. I had went for a 15 mile bike ride earlier that day – what if the monsters found me at the side of Platte River? What if I have to make a bee-line to the restrooms that are more than a dozen rows and a section away? What other precarious situations will I find myself in when another emergency pops up?
This is, in my opinion, one of the worst things about having Crohn’s disease. As hard as you try, there is always the chance it will rob you of experiences and there is nothing you can say or do to change that. I don’t like when Crohn’s starts to dictate my daily planner. I hate when I have to succumb to the will of those monsters.
Right now the best I can do is to carry the necessary reinforcements with me at all times and try to avoid any foods I know will cause undue stress. Maybe it is time to really restrict my diet. Because these monsters need to stay away.
Cute monster photo credit: Monsters Inc. Wikia
Why can’t all monsters be this adorable!?
Another year, another RunDenver winter series! This is by far my favorite race series, even though I’m usually met with frigid winter temps, lots of ice, and lots of snow.
This year though has blessed us with terrific weather to start the series. Yesterday’s above average 55 degrees made for perfect running weather by the 10am start. They changed the theme a bit this year – the search for Rudolf! As an adult, I loved it, so I’m sure all the children in the race field was overjoyed at the prospect of helping Santa Clause find Rudolf. And yes, Santa was there helping in the search!
Finishers at the Rudolf Ramble 5K 2016
I’ve been trying to recover since Thanksgiving with a horrible cold and cough so I was anticipating plenty of walking during this 5K. A couple of coughing fits pushed me to the curb but I pressed on and overall had a really great race. I maintained what felt like a pretty even pace and at no point was I ready for the stretcher to haul me to the finish. I ran without a watch but did have Christmas music in my ears, making this search for Rudolf extremely festive. Maybe it was the Christmas music, or the incredible “Rudolf went that way” signs along the course that pushed me to a pretty good finish – 34:09. Not a PR but not even close to the time I thought I would put up.
If you’re looking to stay motivated in the Denver area, I can’t recommend this race series enough. Without fail they start on time, every time. The announcers do a great job exciting the crowd, even leading us in a dynamic warm-up routine. The courses are always well marked, and well kept (especially considering that several times the temps have been below freezing and ice is everywhere). The water stops are always manned and always have a fresh supply. I’ve even walked a race with friends, been nearly the last person, could almost touch the sag wagon, and I still had water at the aid station! The finish always has great local vendors – food, snacks, massages, face painting, you name it!
It’s just nice to consistently have a great experience with this crew! I am looking forward the remaining races in the series, and maybe for once The Dam Run will actually have good weather.
In the spirit of Crohn’s & Colitis Awareness Week, I thought it would be fun to showcase what I, as a patient, look like with IBD. There is a stigma around these diseases that patients don’t leave their houses because they can’t be too far from a bathroom. We’re sometimes conveyed as hermits, just surviving the best we know how. Living day to day in misery (and even the use of the word living is a stretch for some).
There is no doubt – Crohn’s disease has taken many things from me. Especially during my childhood when I had to sit in the shade during recess because the medication and long exposure to sun caused blisters or when I couldn’t go to school for weeks or months at a time because of the pain and symptoms. (I was such a nerd too; I LOVED school as a kid. Well, and as an adult.)
However, there is no doubt in my mind that Crohn’s disease has made me so much stronger and passionate and caring and determined. I shared my story yesterday and a dear friend of mind said I was “the toughest chic” she knows. I hear these things and can’t bring myself to believe them. I don’t feel like I’m doing anything especially awesome to make me strong, or tough, or determined. But then I realize that while I just see my life as what it is, other people see the battle I have to live through. I’ve realized through the years that I can HELP people, that I can INSPIRE people. That’s the best gift I can leave behind.
Of course, actions speak louder than words and I know that portraying a happy, successful, positive image is one of the best way to help other patients and their families.
So with that, here’s what the face of IBD can look like. Obviously my point is that having an incurable disease doesn’t mean you don’t get to live your dream. (And my life is kind of awesome)
Yesterday was the first official day of Crohn’s & Colitis Awareness Week 2015.
On November 14, 2011, the U.S. Senate passed Senate Resolution 199 (SR 199): “A resolution supporting the goals and ideals of Crohn’s and Colitis Awareness Week, December 1-7.”
S. Res. 199 expresses appreciation to the family members and caregivers who support people in the United States living with Crohn’s disease and ulcerative colitis. It also commends health care professionals who care for Crohn’s disease and ulcerative colitis patients and biomedical researchers who work to advance research aimed at developing new treatments.
I would be amiss if I didn’t start by sharing a little bit of my history with Crohn’s Disease. I was first diagnosed with Crohn’s Disease when I was seven years old. I was sick for a long time before receiving my diagnosis. We drove us all over North Carolina and Georgia, being shaped like a rag doll and carried by my family. I was malnourished and, at that time, the arthritis was the worst. Then came the Crohn’s symptoms: diarrhea and excruciating pain. I took steroids and aspirin by the handful. I was carried by my teachers during second grade and missed many months of my third grade year. It was impossible for me to go to school so I stayed with my grandma most days. There were a lot of tears…from everyone. Finally all the meds came together and I was “healthy” again. One thing I still remember is the delivery of hand made get well cards from my classmates. I’m sure no one in my class remembers those and I’m not sure if Mrs. Sharkey will remember them, but it meant more to me than anyone could possibly know.
Other things I remember as a child:
- Having to share one bathroom as a family of five (and two brothers). And hearing my mom plead with my brothers to let me in.
- Having to use a towel in class in third grade to wrap up my legs because they ached so bad.
- Getting to eat french fries anytime I wanted at school because I rarely ate anything at all.
- Colonoscopy preps never got easier. I had to do a prep one day while working with my grandma and I just remember sitting on the golf cart (she worked at a golf course) trying not to puke my brains out.
- During the great “blizzard of 93” I tried to build a snowman but it ended up being so tiny because my stomach hurt so bad I couldn’t stay outside any longer.
- Figuring out that if I laid on my stomach with a pillow underneath me, the pain wouldn’t be so bad. Still my go-to!
- The chipmunk face, but only if the chipmunk stored pool balls instead of nuts in his face. And so much weight gain. After I finished one round of steroids and lost the weight, my mom said something like, “she looks like my baby again.”
- The world not getting it. I was all alone. In my small town no one else had this problem, no one else was around to talk to. There was no Camp Oasis. No support groups. It was just me, little seven year old me.
I’ve had many small flares since being first diagnosed but there are two major ones that stand out. The first came in college. I was having a really hard time getting around and my sciatic nerve pain was debilitating. I finally went to the doctor and after many xrays and an MRI the diagnosis was “I had the back of a 50 year old woman.” I was 20. That MRI revealed spondylitis, degenerative disc disease, and a partially collapsed disc among other things. I immediately started therapy which helped with the pain but like before, the Crohn’s symptoms appeared. I tried to live with it but the pain became too much to tolerate so I went in for a colonscopy. The doc’s words: “I don’t know how you’re still functioning.” My colon was so bad they couldn’t even get the scope through. I started to wake up part of the way through so they juiced me up and I don’t even remember leaving the hospital. At that point my insurance was terrible (aren’t all college students?) and I wasn’t covered for treatment. A doctor found a drug trial at the University of Kentucky and after enrolling I was placed on the study drug, Imuran and an aggressive steroid treatment. It turned out to be a life saver. My immune system was shot but my Crohn’s symptoms disappeared.
During the study I was accepted to the University of Hawaii for graduate studies so had to leave the trial. I clearly didn’t mind since I was moving to Hawaii! The first thing I did when I made it to Oahu was get insurance but because of the pre-existing condition clause I wasn’t covered. It started with small red bumps all over my body which I thought were bed bugs. Then I started to get this weird eye irritation. Then my knees started to ache and my achilles tendons were miserable. Then my back. Then every joint in my body. Then huge welts on my legs. At this point the doctors were dumbfounded and I was depressed. They thought I had some weird disease or infection (from swimming in the Ali Wai Canal, they had a sewage spill). I became bedridden, completely dependent on my husband (who was only my boyfriend at the time). When I had to use the bathroom, or take a bath, or eat – he was there to do it for me. I can’t even begin to descibe the pain I was going through. Every single movement I made brought me to tears. Finally my meds came together and I was on the right track. There came a turning point when I started to walk again, first with a walker (seriously, I was 20 years old and with a walker!), then crutches. Then I started to run. The first place we went when I could walk on my own for an extended period of time? The zoo and then the beach.
After graduation we moved to Denver where we really began our life together. I had another flare after moving but thankfully was in a position where multiple medications were tried and Remicade finally became my saving grace. Every six weeks I sit in my recliner with a pillow and blanket while Diane gives me my “hulk juice.” For almost four years now, it has been my miracle drug and kept me in remission.