Ok, I know you're thinking how the hell can there be perks to having an inflammatory bowel disease? The disease is miserable and there's no cure. I'm coming from an entertaining point of view. I have to make jokes about the disease, otherwise it will take control of my life. Personally, I prefer to laugh. Always laugh.
So let's see....what are the perks? First off I want to talk about gas. Normally when you're in an intimate or serious relationship you're embarrassed to pass gas. What if it smells? What if it's too loud - like tuba loud? What if it turns the other person off? Well, when you have Crohn's or Colitis it's time to get over being the shy farter. Those nasty things can sneak up on you when you least expect it.
It's especially humiliating when you're under the covers and trying to cuddle. There's just no way you can hide it from your partner. The Egyptian cotton sheets just absorb the odor and it lingers for what feels like forever! I feel like I need to sleep with a Glades air freshener next to my pillow. Now sometimes the gas may be the Crohn's; other times it may just be those pinto beans you ate for dinner.
I'm sure many of you have the "I can't wait" card. I have yet to get this card. I think secretly I don't want to carry it around because public bathrooms gross me out. I also like to think that I won't ever have an accident in a public place: denial. So I use my "I can't wait" for airplanes. If someone else is worse off than me, I will not ask to preboard. I don't want the poor blind lady next to me to be shoved aside. However, I think it would be smart to be near a restroom while up in the sky. That situation would be devastating. The entire flight would know if I was having an explosion in the bathroom. Those oxygen masks would be dropping from the ceiling ASAP! Plus, I'd miss out on getting my free peanuts.
Now this perk I don't always use...I promise (to my friends and family). The, "I can't eat that," excuse. I am being extremely health conscious since I've been diagnosed with Crohn's. There are a lot of people out there who don't understand that it can't be cured by diet. There are also a lot of people out there who think you can just have a little nibble. Rather than sit there and explain how the disease works, I just say I'm not allowed to eat it. I mean there's no food boss out there telling me what I can and cannot eat. Every person is different (for the millionth time). If I decide to splurge a little on a dessert, I will deal with the consequences later.
This one I'm sure my fiance thinks I use, but I swear I don't (wink wink)! The, "I can't have sex because my stomach hurts." On a serious note, I honestly have a very open and honest relationship with my fiance. But I guarantee there are people out there with IBD using that as an excuse! You know who you are! The medication also takes away your drive. So we have numerous things to assign blame to...mmhmm.
I know there will be more perks I will discover. I have the rest of my life to live with Crohn's. I'm sure I can find more positive with this disease. Ready, set...GO!!!
http://gizmodo.com/#!5527660/the-better-marriage-blanket-dampens-farts-to-save-lives-relationships
Friday, March 25, 2011
Wednesday, March 16, 2011
No, you're a colon!
This post was originally from my blog "What's with today, today?"
Life likes to throw darts at you…
Dodge them.
Catch them.
Don’t let them hit you where it hurts.
I’m not one who likes to complain about the deck of cards I’ve been dealt. I can accept it, come to a compromise and move on.
October wasn’t exactly the easiest month for me – turns out either were the last 3 years. I had frequent visits to doctors and the ER. I got used to hearing the diagnosis of Gastritis, Irritable Bowel Syndrome and my favorite, "it's all in your head." It wasn't until I moved to Florida that I demanded a colonoscopy. The procedure in itself is not too bad. You're put under, so the scary thought of someone staring at your bare butt isn't so bad. However, the night before is pure hell. You can forget about getting sleep. You CAN count on spending the entire night with your butt glued to the toilet. Just place some scented candles in the bathroom and a lot of books or magazines. This is generally not a typical procedure for someone under the age of, ohhhh, 40! But this can be a miracle procedure. If it wasn't for that small camera shoved up my butt, I would have waited another three years to be diagnosed. My colonoscopy discovery: Crohns Disease, with Colitis.
Not exactly what I was wanting to hear, but finally it all made sense! Now I have this unpleasant love/hate relationship with GI doctors. My favorite (total sarcasm) was the doctors in Santa Fe. Wow, just WOW! I had a lady GI tell me to "fuc**ing read the labels," she was convinced I had an allergy to dairy. I was "ignoring" whey in the ingredients. Also, she proceeded to tell me that I was depressed and that caused all my stomach pain. Well, heck yeah lady, of course I'm depressed. Everyone thinks I'm a hypochondriac! About four months later I had my gallbladder removed. Thank you for listening Ms. GI devil woman. Good thing it didn't explode and cause even bigger problems. I still want to write you a mean letter giving you a piece of my mind!
I'm a firm believer in the saying, "follow your gut!" I didn't make it up and I had the symptoms for a reason. Generally it takes doing your own research and approaching the doctors. They never want to take that extra step and find out what's wrong. I've been told I'm a GI doctors worst nightmare. I did watch a lot of Freddy Krueger as a child, but I don't think my symptoms were that scary to approach!
I can gladly say that I'm practically in remission and on my way to figuring out how to live with Crohns. My life will consist of medication and monthly injections, but at least now I know it wasn't all "in my head." You still have to be the squeaky wheel that always gets the grease. I still have to do all my research (with love and support from my family). BUT, I will never again accept the cold shoulder from a doctor. Demand what you want. Now I can sometimes laugh about it all and call myself a colon. Bowel movements tend to be the topic of conversation in the Camarena house...live and laugh.
Life likes to throw darts at you…
Dodge them.
Catch them.
Don’t let them hit you where it hurts.
I’m not one who likes to complain about the deck of cards I’ve been dealt. I can accept it, come to a compromise and move on.
October wasn’t exactly the easiest month for me – turns out either were the last 3 years. I had frequent visits to doctors and the ER. I got used to hearing the diagnosis of Gastritis, Irritable Bowel Syndrome and my favorite, "it's all in your head." It wasn't until I moved to Florida that I demanded a colonoscopy. The procedure in itself is not too bad. You're put under, so the scary thought of someone staring at your bare butt isn't so bad. However, the night before is pure hell. You can forget about getting sleep. You CAN count on spending the entire night with your butt glued to the toilet. Just place some scented candles in the bathroom and a lot of books or magazines. This is generally not a typical procedure for someone under the age of, ohhhh, 40! But this can be a miracle procedure. If it wasn't for that small camera shoved up my butt, I would have waited another three years to be diagnosed. My colonoscopy discovery: Crohns Disease, with Colitis.
Not exactly what I was wanting to hear, but finally it all made sense! Now I have this unpleasant love/hate relationship with GI doctors. My favorite (total sarcasm) was the doctors in Santa Fe. Wow, just WOW! I had a lady GI tell me to "fuc**ing read the labels," she was convinced I had an allergy to dairy. I was "ignoring" whey in the ingredients. Also, she proceeded to tell me that I was depressed and that caused all my stomach pain. Well, heck yeah lady, of course I'm depressed. Everyone thinks I'm a hypochondriac! About four months later I had my gallbladder removed. Thank you for listening Ms. GI devil woman. Good thing it didn't explode and cause even bigger problems. I still want to write you a mean letter giving you a piece of my mind!
I'm a firm believer in the saying, "follow your gut!" I didn't make it up and I had the symptoms for a reason. Generally it takes doing your own research and approaching the doctors. They never want to take that extra step and find out what's wrong. I've been told I'm a GI doctors worst nightmare. I did watch a lot of Freddy Krueger as a child, but I don't think my symptoms were that scary to approach!
I can gladly say that I'm practically in remission and on my way to figuring out how to live with Crohns. My life will consist of medication and monthly injections, but at least now I know it wasn't all "in my head." You still have to be the squeaky wheel that always gets the grease. I still have to do all my research (with love and support from my family). BUT, I will never again accept the cold shoulder from a doctor. Demand what you want. Now I can sometimes laugh about it all and call myself a colon. Bowel movements tend to be the topic of conversation in the Camarena house...live and laugh.
Sunday, March 13, 2011
Ch-Ch-Changes
Every morning my alarm clock goes off and I cringe. I wonder if the day will breeze by, or if I will struggle in pain. I tell myself that it's going to be a good day, and try not to obsess about the word remission. I remind myself of the things that make my life have importance. I have a wondrous fiance who is my rock. My family, whether near or far, are extremely supportive. My endearing mother does everything in her power to make my days better. Having this support system makes Crohn's a little easier.
So why do I often feel alone? Why do I want to vent about all the negativity of this disease? Well, for one, I believe that it's a way of not feeling alone. Also, I've realized how connecting with other IBD patients can bring me an energy of calmness. I'm not wanting this blog to be pessimistic. I want to be honest about the good, the bad and the ugly! If one person reads my blog and can relate, well that's enough for me.
Vent topic for today: change.
My latest struggle, like there isn't enough, is dealing with my new social life. I've always been an active person and immensely social. I would go to class all day, work in the evening, and still have time for friends. I can say with confidence that most of my friends will agree that I've always been an energetic person. Some may call me weird, funny, dotty, loving, and a real piece of work! Today I feel like I've lost my true character. I'm sure it's still under the surface waiting to erupt. Today if I had to replace the words to describe me, I would say I am: tired, grumpy, anxious, mad, and scared. Of course there are times where I'm able to laugh, have fun and be my old crazy self. I just feel that the new me is overpowering the old me. The good thing is that I can recognize that being a grouch is not my normal trait. I can hear my brothers voice right now saying, "Mmmhmm, yeah right!"
I know that several of these new traits are temporary and due to my medication. I won't even bring up Prednisone, because I'm sure EVERYONE is sick of me complaining about it. Anyway, I just am having a difficult time not being able to do what 20 somethings do. Now, I don't necessarily feel I need to go out and drink myself to stupidity. I just don't even have the energy to sit at a club or bar past 10p.m.. Who wants to be with someone who is falling asleep at a bar with ginger ale in their hand? I know there are other things to do besides "party." I just don't even have the energy to do sober, recreational activities. I get tired simply running three quick errands - sitting on my butt in the car! My fiance is always volunteering to be the driver. Probably because my patience is very minimal these days; I've developed extreme road rage. I think I should volunteer at a nursing home and do elderly activities. I probably have the same amount of energy as a 90 year-old (no disrespect to the elderly). Maybe then I won't feel so alone, or feel like I'm losing my friends.
A Glorious Day at the Nursing Home
ME: "Hey Gretchen, I really like what you've knitted today. I hope to see you later at the ice cream social."
GRETCHEN: "Same to you Carly. Thanks for playing penny bingo with us yesterday. You really know how to yell out the numbers! Oh, and thanks for bringing the sugar free candy."
So, I have to live with this temporary confinement. Become a content homebody. I have to convince myself that the old Carly will arise. Maybe I'll come back even crazier. Not as crazy as Charlie Sheen, but definitely nuttier than my previous persona. I will continue to take my Cimzia shots; instead of wanting to throw them out the window, or use them for a game of darts. I will also continue to embrace all the support surrounding me.
*I am lucky to have my fiance by my side. We're like two hobbits in the winter, and somehow it works. This man will fill my sitz bath AND keep my company. I have so much love for that Hungarian hunk of joy. He is the only one who deals with my multiple personalities on a daily basis. They are not always pretty. He never knows who's going go walk through the door!
Side note:
This thing has helped me tremendously with my fissures.
So why do I often feel alone? Why do I want to vent about all the negativity of this disease? Well, for one, I believe that it's a way of not feeling alone. Also, I've realized how connecting with other IBD patients can bring me an energy of calmness. I'm not wanting this blog to be pessimistic. I want to be honest about the good, the bad and the ugly! If one person reads my blog and can relate, well that's enough for me.
Vent topic for today: change.
My latest struggle, like there isn't enough, is dealing with my new social life. I've always been an active person and immensely social. I would go to class all day, work in the evening, and still have time for friends. I can say with confidence that most of my friends will agree that I've always been an energetic person. Some may call me weird, funny, dotty, loving, and a real piece of work! Today I feel like I've lost my true character. I'm sure it's still under the surface waiting to erupt. Today if I had to replace the words to describe me, I would say I am: tired, grumpy, anxious, mad, and scared. Of course there are times where I'm able to laugh, have fun and be my old crazy self. I just feel that the new me is overpowering the old me. The good thing is that I can recognize that being a grouch is not my normal trait. I can hear my brothers voice right now saying, "Mmmhmm, yeah right!"
I know that several of these new traits are temporary and due to my medication. I won't even bring up Prednisone, because I'm sure EVERYONE is sick of me complaining about it. Anyway, I just am having a difficult time not being able to do what 20 somethings do. Now, I don't necessarily feel I need to go out and drink myself to stupidity. I just don't even have the energy to sit at a club or bar past 10p.m.. Who wants to be with someone who is falling asleep at a bar with ginger ale in their hand? I know there are other things to do besides "party." I just don't even have the energy to do sober, recreational activities. I get tired simply running three quick errands - sitting on my butt in the car! My fiance is always volunteering to be the driver. Probably because my patience is very minimal these days; I've developed extreme road rage. I think I should volunteer at a nursing home and do elderly activities. I probably have the same amount of energy as a 90 year-old (no disrespect to the elderly). Maybe then I won't feel so alone, or feel like I'm losing my friends.
A Glorious Day at the Nursing Home
ME: "Hey Gretchen, I really like what you've knitted today. I hope to see you later at the ice cream social."
GRETCHEN: "Same to you Carly. Thanks for playing penny bingo with us yesterday. You really know how to yell out the numbers! Oh, and thanks for bringing the sugar free candy."
So, I have to live with this temporary confinement. Become a content homebody. I have to convince myself that the old Carly will arise. Maybe I'll come back even crazier. Not as crazy as Charlie Sheen, but definitely nuttier than my previous persona. I will continue to take my Cimzia shots; instead of wanting to throw them out the window, or use them for a game of darts. I will also continue to embrace all the support surrounding me.
*I am lucky to have my fiance by my side. We're like two hobbits in the winter, and somehow it works. This man will fill my sitz bath AND keep my company. I have so much love for that Hungarian hunk of joy. He is the only one who deals with my multiple personalities on a daily basis. They are not always pretty. He never knows who's going go walk through the door!
Side note:
This thing has helped me tremendously with my fissures.
Sunday, February 27, 2011
The Prednisone Rollercoaster
Most of us living with IBD have been put on steroids. I have this love/hate relationship with the drug. When I woke after my colonoscopy I instantly had a perscription for Prednisone in my hand. I had no previous knowledge of what the drug is like, nor did I realize that it was one of the most difficult ones to stop taking. I suppose when the doctor sees severe inflammation they jump right to Prednisone for a quick solution. I would have liked to discuss my options, but when you know so little about IBD, you're vulnerable.
At first I was at 40mg a day. The drug made me feel lethargic and emotional. However, after a few weeks my stomach aches and cramping reduced greatly. At the beginning I had this euphoric feeling that I was getting better. After two months I was back to the gym and able to make it through an entire work day. The only side effect I noticed was acute exhaustion.
After a month and a half I began to notice the long term affects of the drug - still mild in my mind. My face broke out in a dermatitis-like rash. My cheeks became puffy and more rounded than normal - I call this squirrel cheeks. The real name is moon face (the most difficult for me to accept). This is more of a vanity issue for me. I'm a girl! My "peach fuzz" all over my body grew darker and thicker. I noticed a mild, fatty hump under my neck (called a buffalo hump). I tried to laugh about my appearance. I would joke with people saying I was storing my lunch in my cheeks. My fiance bought me a buffalo stuffed animal to lighten my mood. I try my best to keep a sense of humor. Somehow I didn't experience weight gain - the only positive. Every other symptom listed for Prednisone, I eventually got after two months! It wasn't until I began tapering off the drug that I experienced the true fire and brimstone.
Tapering off Prednisone feels impossible. At first I thought it would be a piece of cake. I was hoping I could taper by 5mg, with trivial problems. Clearly I didn't understand how effortful this attempt would be.
I developed daily migraines, which led to seeing a neurologist. Which led to more medication, more money spent. I was constantly put back on a higher dose to relieve the withdrawal symptoms. Every few weeks it felt like I was back to square one. The lower the dose, the worse my symptoms became. Today I am still at 5mg, because tapering off has been so difficult. At this point, I'm ready to deal with the side effects and get off the atrocious steroid. To me, Prednisone is just masking my problems. Without being at 10mg or higher, my stomach pain has been severe. Right now I'm questioning if I'm experiencing adrenal insufficiency (I will know this week). I've looked at a list of withdrawal symptoms and can relate to every one. I am a Google addict. Just one more thing for me to worry about and feel like a hypochondriac.
I still have a list of questions I'm ready to present to my GI doctor this week. Especially because I started an anti-TNF treatment called Cimzia in November. How can I possibly know if it's helping while I'm still on Prednisone? If my current pain is all related to Prednisone, then I refuse to increase my dose. I know I would feel better if I was at 10-15mg, but eventually I would have to begin tapering and go through the agony....again!
Since this disease is still new to me, I'm unsure what my stomach pain means. I'm comfortable trusting my judgment, but unsure what constitutes a flare. If Crohn's means having flare-like symptoms for a month at a time, then I'll live with it. I have no other choice. However, if it's all caused by the Prednisone, I will continue to taper and never look back. I am determined to be off Prednisone. I know my life will have some normalcy once I'm off the steroid. Hope is what will motivate me to get off this frustrating drug.
These are a few pictures that display the "moon face." I have seen others have it more severe, but to me it's enough to cause bother.
Before Prednisone:
After taking Prednisone (also at a lower body weight):
At first I was at 40mg a day. The drug made me feel lethargic and emotional. However, after a few weeks my stomach aches and cramping reduced greatly. At the beginning I had this euphoric feeling that I was getting better. After two months I was back to the gym and able to make it through an entire work day. The only side effect I noticed was acute exhaustion.
After a month and a half I began to notice the long term affects of the drug - still mild in my mind. My face broke out in a dermatitis-like rash. My cheeks became puffy and more rounded than normal - I call this squirrel cheeks. The real name is moon face (the most difficult for me to accept). This is more of a vanity issue for me. I'm a girl! My "peach fuzz" all over my body grew darker and thicker. I noticed a mild, fatty hump under my neck (called a buffalo hump). I tried to laugh about my appearance. I would joke with people saying I was storing my lunch in my cheeks. My fiance bought me a buffalo stuffed animal to lighten my mood. I try my best to keep a sense of humor. Somehow I didn't experience weight gain - the only positive. Every other symptom listed for Prednisone, I eventually got after two months! It wasn't until I began tapering off the drug that I experienced the true fire and brimstone.
Tapering off Prednisone feels impossible. At first I thought it would be a piece of cake. I was hoping I could taper by 5mg, with trivial problems. Clearly I didn't understand how effortful this attempt would be.
I developed daily migraines, which led to seeing a neurologist. Which led to more medication, more money spent. I was constantly put back on a higher dose to relieve the withdrawal symptoms. Every few weeks it felt like I was back to square one. The lower the dose, the worse my symptoms became. Today I am still at 5mg, because tapering off has been so difficult. At this point, I'm ready to deal with the side effects and get off the atrocious steroid. To me, Prednisone is just masking my problems. Without being at 10mg or higher, my stomach pain has been severe. Right now I'm questioning if I'm experiencing adrenal insufficiency (I will know this week). I've looked at a list of withdrawal symptoms and can relate to every one. I am a Google addict. Just one more thing for me to worry about and feel like a hypochondriac.
I still have a list of questions I'm ready to present to my GI doctor this week. Especially because I started an anti-TNF treatment called Cimzia in November. How can I possibly know if it's helping while I'm still on Prednisone? If my current pain is all related to Prednisone, then I refuse to increase my dose. I know I would feel better if I was at 10-15mg, but eventually I would have to begin tapering and go through the agony....again!
Since this disease is still new to me, I'm unsure what my stomach pain means. I'm comfortable trusting my judgment, but unsure what constitutes a flare. If Crohn's means having flare-like symptoms for a month at a time, then I'll live with it. I have no other choice. However, if it's all caused by the Prednisone, I will continue to taper and never look back. I am determined to be off Prednisone. I know my life will have some normalcy once I'm off the steroid. Hope is what will motivate me to get off this frustrating drug.
These are a few pictures that display the "moon face." I have seen others have it more severe, but to me it's enough to cause bother.
Before Prednisone:
After taking Prednisone (also at a lower body weight):
The Core
The center of my body is the core to my existence...
It radiates through to the tips of my fingers...
When it's twinged, it creates my body to spiral into mystification...
I'm at a loss for explanation...
I'm at a loss for alleviation...
The center of my body consumes my daily timetable...
It causes a hesitance to my joy...
It causes arrest to my character...
I'm in control of how it manipulates me daily...
I fight its actions...
I govern my reactions...
The center of my body has a diagnosis of forever...
When it's cordial I welcome its presence...
When it's harmonious I walk on water...
My bond with the center of my body is everlasting...
I can welcome its companionship...
I can be calm toward its boundless grip...
My core,
My center,
My life foe,
My flame.
It radiates through to the tips of my fingers...
When it's twinged, it creates my body to spiral into mystification...
I'm at a loss for explanation...
I'm at a loss for alleviation...
The center of my body consumes my daily timetable...
It causes a hesitance to my joy...
It causes arrest to my character...
I'm in control of how it manipulates me daily...
I fight its actions...
I govern my reactions...
The center of my body has a diagnosis of forever...
When it's cordial I welcome its presence...
When it's harmonious I walk on water...
My bond with the center of my body is everlasting...
I can welcome its companionship...
I can be calm toward its boundless grip...
My core,
My center,
My life foe,
My flame.
Sunday, February 13, 2011
F is for forever
The moment you are diagnosed with Crohn's, your life changes. All of a sudden you have to come to a realization that this disease will be forever. You've lived with it probably for years before your diagnosis. Yet, the official declaration does not make it easier.
I distinctly remember waking up after my colonoscopy and seeing the doctors pensive expression. He didn't want to perform the colonoscopy in the first place. His exact words to me were, "a little diarrhea is no reason for a colonoscopy." He proceeded to tell me he was sorry that I have Crohn's, especially when he saw the tears stream down my face. He said that most likely I had been living with the disease for three years, easily. Of course I was immediately upset. I had been going to gastro doctors for years trying to figure out what caused my stomach pain. Why was it that it took a nurse in the ER to recommend a colonoscopy? She was also the one who felt I had some kind of auto immune deficiency. I was wasting a significant amount of money going back and forth to the ER. A cat scan here, an endoscopy there - nothing. Even after the ER nurse requested an emergency colonoscopy, I had to argue with the doctors. The next day all the nurses in the gastro office were demanding to the doctors to perform the colonoscopy. A nurse named Judy said, "Look at her, she has a ton of canker sores in her mouth. She definitely has something going on in there." Judy went to each doctor personally trying to squeeze me in for the procedure. She was determined to find a solution to my daily obstacles. She handed me a free container of Movi-Prep. Off I went to my brothers to spend the night...on the toilet! My mom told me to make a bed near the bathroom. Instead I decided the living room was close enough. I lit some candles and dimmed the lights in the bathroom. If I was going to spend the entire night in there, I wanted to be somewhat comfortable. If only there was a toilet built into a recliner - now that would be amazing for Crohn's patients. The entire time I was drinking the Movi-Prep I was hoping it was worth it.
Days after my procedure I was still in shock. How do I live with this disease? What does this all mean for my future? Do I always have to be on medication? Then came every ones opinion's. The thing I had to remember is: people care. Everything they tell you is out of love. No one can truly understand what it's like to have this disease. People can read literature and experience someone close to them living with Crohn's. However, you're the only who has to live with it every day. Some days I feel great and have no symptoms at all. Other days I feel like I've swallowed shards of glass. People will see you feeling better for a moment. As soon as you're not well, they think, "Well, I thought you were doing better? You seemed ok the other day?" I'm exhausted, which makes me feel lazy. I barely have enough energy to cook (thank goodness for Antal), clean, shower and exercise. I have to tell myself that this is all NORMAL. I believe there are stages a person goes through after being diagnosed. I'm still lingering between the denial and anger stage.
It becomes difficult to stay positive. I wake up each morning unsure if it will be a good or bad day. I know that eventually I will get back to being the energetic, crazy Carly everyone knows. I've been known for joking about bowel movements. Well now I truly have a reason for this humor. If I don't laugh, I won't stay positive. This journey requires an ocean filled of humor. So here I go...let's laugh about poop, farts, stomach grumbles and belching! I'll end this note with a toot.
I distinctly remember waking up after my colonoscopy and seeing the doctors pensive expression. He didn't want to perform the colonoscopy in the first place. His exact words to me were, "a little diarrhea is no reason for a colonoscopy." He proceeded to tell me he was sorry that I have Crohn's, especially when he saw the tears stream down my face. He said that most likely I had been living with the disease for three years, easily. Of course I was immediately upset. I had been going to gastro doctors for years trying to figure out what caused my stomach pain. Why was it that it took a nurse in the ER to recommend a colonoscopy? She was also the one who felt I had some kind of auto immune deficiency. I was wasting a significant amount of money going back and forth to the ER. A cat scan here, an endoscopy there - nothing. Even after the ER nurse requested an emergency colonoscopy, I had to argue with the doctors. The next day all the nurses in the gastro office were demanding to the doctors to perform the colonoscopy. A nurse named Judy said, "Look at her, she has a ton of canker sores in her mouth. She definitely has something going on in there." Judy went to each doctor personally trying to squeeze me in for the procedure. She was determined to find a solution to my daily obstacles. She handed me a free container of Movi-Prep. Off I went to my brothers to spend the night...on the toilet! My mom told me to make a bed near the bathroom. Instead I decided the living room was close enough. I lit some candles and dimmed the lights in the bathroom. If I was going to spend the entire night in there, I wanted to be somewhat comfortable. If only there was a toilet built into a recliner - now that would be amazing for Crohn's patients. The entire time I was drinking the Movi-Prep I was hoping it was worth it.
Days after my procedure I was still in shock. How do I live with this disease? What does this all mean for my future? Do I always have to be on medication? Then came every ones opinion's. The thing I had to remember is: people care. Everything they tell you is out of love. No one can truly understand what it's like to have this disease. People can read literature and experience someone close to them living with Crohn's. However, you're the only who has to live with it every day. Some days I feel great and have no symptoms at all. Other days I feel like I've swallowed shards of glass. People will see you feeling better for a moment. As soon as you're not well, they think, "Well, I thought you were doing better? You seemed ok the other day?" I'm exhausted, which makes me feel lazy. I barely have enough energy to cook (thank goodness for Antal), clean, shower and exercise. I have to tell myself that this is all NORMAL. I believe there are stages a person goes through after being diagnosed. I'm still lingering between the denial and anger stage.
It becomes difficult to stay positive. I wake up each morning unsure if it will be a good or bad day. I know that eventually I will get back to being the energetic, crazy Carly everyone knows. I've been known for joking about bowel movements. Well now I truly have a reason for this humor. If I don't laugh, I won't stay positive. This journey requires an ocean filled of humor. So here I go...let's laugh about poop, farts, stomach grumbles and belching! I'll end this note with a toot.
Tuesday, February 8, 2011
Here's My Gut Feeling
This blog is my way to express my personal experience with Crohn's as an individual. I'm still learning and do not claim to be a medical expert. I want this blog to reflect the comedic and serious side of living with Crohn's Disease. At times you have to laugh at the embarrassing moments. At others, you feel sorry for yourself - which is totally acceptable in my opinion!
My fiance and I will be writing a book about our intimate relationship with Crohn's Disease. I'm more than excited to begin writing. I will discuss our adventure gathering information and putting together every chapter. I hope this blog will allow others to not feel alone living with IBD.
More to come....
My fiance and I will be writing a book about our intimate relationship with Crohn's Disease. I'm more than excited to begin writing. I will discuss our adventure gathering information and putting together every chapter. I hope this blog will allow others to not feel alone living with IBD.
More to come....
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