Talk about a delayed reaction!

Back in late October I began taking Cimzia. This medication is generally used to treat Rheumatoid Arthritis. Like most biologics, it greatly affects your immune system. All of us with Crohn's or Colitis deal with this every day. I'm lucky that I haven't had an upper respiratory infection, shortness of breath, or an intense skin rash. However, I could theorize that my swollen ankles, dizziness and joint pain are from Cimzia. I just know those are common symptoms of Crohn's. Every medication comes with a price to pay.

Cimzia comes in a prefilled syringe. The thought of giving myself injections seemed unlikely to do. As a child I had seen several diabetic kids and adults need daily injections. I couldn't imagine the bravery it took to give yourself the shots. I wasn't needle phobic, but I always cringed at the sight of a needle. No one enjoys being poked. I'm personally not into finding pleasure in pain. No way, Jose. Being in the hospital five days is enough to never want to be poked again! At first my dose was two 200mg syringes every four weeks. This gave me enough time in between to forget the feeling. I was off Prednisone and relying on the Cimzia to help me into remission. Within time my symptoms were not improving so I began taking Imuran, 150mg daily. I also switched my Cimzia dose to 200mg every two weeks. I was so excited to only give myself one shot at a time.

So time has passed and I've been doing better with my new routine of medication. BUT (there's always a but), now I've developed a new fear of giving myself the shots. I was such a pro in the beginning. I knew I had to do it, and I was determined to get better. When the nurse came to my house she taught me all the proper steps in taking the shots. It took a few more times with assistance to feel comfortable. The nurses at my Dr.'s office were a little annoyed to help with the injection. They never have time. In the end they would always squeeze me in, because they could see I was truly scared. Scared about the disease and scared about living a life of pain. The only uncomfortable part is the thick, gel-like liquid going into your thigh. The injection time takes longer because of the consistency. Not always, but at times the substance can sting and burn. You can see your skin begin to rise and swell. I have been trying to ice the area before and after, which seems to reduce the swelling aftermath. It must seem like I have it perfected, right?

The last two or three times I've given myself my injections I've had severe anxiety. My brain tells my hand that it's scared, and my hand doesn't follow through with the "jabbing/stabbing" motion. I know what it feels like, I know what to expect. So why am I all of a sudden scared? There are technically four possible injection locations on your body: right and left thigh, and right and left portion of your abdomen. I thought the fear would be knocked out of me by switching to my abdomen. Possible thought: the thighs are dense, close to muscle, and more difficult to pull and pinch the fat. I could stand up, maybe feel less muscle or skin. Well, it didn't make a difference where I poked myself. I still was taking 20 minutes or more to give myself the shot. My fiance is usually there for support. He tells me that once it's over I can go back to my life. I listen to his encouragement, but I still have this bizarre fear. I swear my hand just won't move. I can count to three and mime the jabbing motion numerous times, but it just won't follow through.

"Antal, I swear I don't know why I can't do it. My hand just won't move!"
"Take a deep breath."

Another issue...I have suffered from generalized anxiety disorder for years. Ever since I can remember I've had anxiety. Luckily it's been a long time since I've had a major attack, but it always comes back for a brief visit. As I stand there with my needle, I can hear my moms voice.

"You really need to find the best way to handle your anxiety. Biofeedback? Yoga? Acupuncture?"

I know that breathing in and out won't take away my anxiety or slow down my pounding heart. I've already let the fear of the needle take over. Lesson learned: I need to figure out how to tackle my anxiety. Clearly it's reflecting through my ability to take care of myself. I know it's not the most painful thing I've experienced. I can get my blood drawn, piece of cake. So I need to relax. Anyone else have this problem? Maybe for now my best way to avoid this is to teach my fiance to jab!



http://www.creakyjoints.org/news/creaky-catacombs-articles/cimzia-patients-can-now-use-ra-friendly-self-injectors

The Man says I have to work!

Oddly, as I'm writing this my stomach begins to grumble. At least no one can see me jump from the computer and run to the bathroom.

So within the past few months I have noticed a change in my ability to work. Currently I am working as a concierge at a spa which requires me to stand on my feet eight hours a day. The most difficult part is standing still and hunching over the computer. I've tried numerous things to decrease the aches and pain in my legs: support hose, Dansko clogs, shoe inserts and walking tennis shoes (forgot to mention pain medication here and there). Sadly this is not the only difficult part about working. I generally have my stomach attacks between 8am to 1pm. I will literally be in a discussion with a client and my stomach will decide to ruin my moment! I have a short window of time to hold it before losing control. However, when a client walks in they are generally undecided about choosing a service. Not good for someone who can't hold it. I'd like to whip out my "I can't wait" card and shout to the client:

"Sorry, but either you make up your mind about what you want, or I'm going to crap myself...literally. I know both you and I don't want to experience that. Come back or call when you KNOW what you want."

I know it's not their fault. I'm really not frustrated with them as much as I am with not being in remission. I haven't had an accident yet, but those moments are the ones where I feel like it's going to become a reality. I would be humiliated to have an accident at work. I can hear my mother's voice,"Carly, you better put an extra pair of underpants in your car. Just in case." Plus the nearest bathroom is not a hop, skip and a jump away. I have to power walk to make it on time. Most of my fellow coworkers are aware of my situation. They can joke with me about how I log my daily BM's.

COWORKER:"So Carly, did you log your poo for the day? Was it rough, or smooth as a mudslide?"
ME:"So far so good. Definitely going to stay away from the cafeteria food today. That place is a diarrhea trigger if I've ever seen one."

It's difficult enough when you're trying to relax at home and having to spend the evening on the toilet. But it's even worse having to hide from guests. I feel bad when my coworkers are left alone at the desk. There is no way I can give them a return time when I'm having an attack. I've tried numerous times to rush...not a good idea - it comes back with a vengeance! The most comfortable place during a flare is your home! I come to work every day with a positive attitude (ok I lied...most of the time). Some days are more difficult than others. I don't want to have an attack. I want to be that dependable employee. It's hard knowing that most people expect you to be sick, or to call out. I don't think it's funny either to use Crohn's as an excuse to get out of work. I want to work. Heck, I need the money, the benefits, and the social advantage of a work atmosphere.

At the moment it's difficult for me to accept that I'm not fully capable of working full time, on my feet. I know that I would like some extra energy to live a life. I have so many things to be excited about. Currently they are being shoved aside. My exhaustion is so extreme, I'm wasting away in bed. I know he loves me, but my fiance is constantly reeled in to the affects of my exhaustion. I'm unable to spend a lot of active time with him. I'm sure movies and naps get tiring. He is truly an amazing man. If I want to push myself at work, he knows it's something I have to do. If I need to take the day off, he's by my side making my breakfast.

So, I know that there are options. There is no true need to put yourself through hell. Yes, disability or social security is almost impossible to get. Our recovery partially (replace "partially" with mainly - truthfully) depends on health insurance and amazing doctors. However, I'm realizing that with this disease it's all about fighting. I'm unsure as to what my future will bring with my career, family life and disease. I know that I look forward to being married and beginning to pathe my path. Right now the main thing I need to "fix" is my health. My job will work itself out the way its meant to be. I'm fortunate enough to have the support of my loving family. There are so many people out there with IBD who are financially struggling. They are unable to get the medication they need and are suffering with the outcome. Healthcare is a whole other issue! I am just grateful for having my support system. I know if I need to take a step aside from the typical work-woman role, so let it be...I'm getting into remission!

P.S. I'm expecting this in the mail. It's like waiting for Christmas!

When is it ok to panic???

Since October, I have struggled with understanding Crohn's disease. The information is overwhelming. Sometimes I think I know the appropriate amount of information to live wisely with this disease. Then I panic about a new symptom and jump on Google. All previous knowledge fails me. I know the internet is filled with nonsense, but still, I need some relief. I know it's a 50/50 coin toss. When I Google, I may see the most terrifying information pop up. OR maybe it will be no big deal - stop stressing Carly! I'd like to constantly think that it's all in my head. After all, I have been told for years that my symptoms are because I'm depressed, anxiety-driven, and just suffering from irritable bowel. How could I not wonder?


There are so many things to take into consideration when having Crohn's. The list is extensive when you look up "chronic diarrhea." Same applies to all medications. I read the side effects list and see myself having ALL of them. So here is my confusion:

1. I live with Crohn's which means: daily diarrhea (for most).
2. Symptoms for Crohn's alone can also be symptoms from medication.
3. Symptoms for Crohn's can also be similar to dehydration from chronic diarrhea.
4. Simple body malfunctions can be similar to serious complications with Crohn's.

My problem: how do you differentiate all of these symptoms? How do you know when to be concerned, or when to think you're okay?
It's no fun feeling like you're a hypochondriac. Currently I have this soreness near my left ankle. The tenderness and pain shoots up near the left portion of my chin. Now, I've had a blood clot before, so I'm aware of the feeling. I did nothing physically to pull a muscle or bruise my muscle. This is where the panic sets in quickly. Diarrhea can cause joint pain or tenderness from dehydration...check, I do have chronic diarrhea. Crohn's as a disease can cause joint pain...check, I have Crohn's! Dehydration can cause tenderness in the muscles or extreme joint/leg fatigue...check, I'm probably still dehydrated from chronic diarrhea! Crohn's disease can cause a person to be susceptible to blood clots, same with medication...check, I've had deep vein thrombosis AND I'm taking plenty of meds.
Wow, I think I've stressed myself out enough for today. This debate is enough to drive anyone crazy.

Of course the simplest thing to do is call your doctor and hope he's available for a response. I'm sure we've all experienced going into the ER or an urgent care of some sort and getting a dense doctor. Most general doctors don't specialize with the digestive system. This makes it so difficult for an IBD patient at times. It's never fun having to explain your disease to a doctor - let alone anyone!

Confession

I have a sweet tooth. I can go without eating wheat and dairy easily. But when it comes to a nibble here and there of candy/sugar, I'm weak.
I confess (with such guilt) that the other day I decided to eat frozen yogurt (dairy and sugar) and a few cow tails candy (more sugar). Darn you Cracker Barrel! Boy did I ever pay later that evening. Why, oh why can't I just accept that I CAN'T eat things like that? I might as well get a blow up mattress and start spending the night in the bathroom. OR I can do what my mother suggested and get a mini TV installed on the bathroom wall. I think I need a plastic, comfy toilet seat for "old" people. Oh dear, this disease is really A PAIN IN THE BUTT!!!

I just want a little sugar...

A healthy diet for Crohn's can be immensely complex. I would say that I'm knowledgeable when it come to eating the right foods. However, when you're struggling to stay in remission, all your knowledge gets thrown out the window.
Just because certain foods are healthy, does not mean that it won't upset your stomach. I can easily determine the foods that are known to cause bloating and gas. I know I will blow up if I eat a plateful of steamed broccoli. On the flip-side, broccoli is good for you. It's bizarre that nutritious vegetables can cause problems for people with IBD. Now that I have Crohn's almost all of my food intake has to be evaluated. I know that everyone reacts differently to foods. However, there are certain foods that are on the "eat with caution" list - which generally applies to most Crohn's patients. I do my best to stay away from dairy, raw vegetables, gluten and high fat foods. The only dairy I will allow myself is yogurt. This is the only dairy product that doesn't cause me pain. I can have other dairy products here and there, but not in excess or large portions in one sitting. Also, I know I'm taking a risk. If I have gluten, I know I need to balance the rest of my meals for the day. Before I had Crohn's I ate bread products for almost every meal. Gluten is in everything!
For six months I have been experimenting with my diet. I'm still on my way to remission. So I know that certain foods will affect my stomach. For a short period I was in denial about my disease. It still happens from time to time. I thought I could handle a nibble of dessert after dinner. I have such a sweet tooth. I should have known that I can't just have a nibble. I was off to CVS to buy packs of marshmallow Peeps. I don't think I can emphasize the operative word: packs. I convinced myself that it was OK, because it's almost Easter. Eating Peeps is festive, everyone knows that. I told myself that I was allowed one Peep a night - obviously it never happened that way. After scarfing one row of Peeps, I would go to bed bloated and in pain. I knew I was eating too much of the wrong things. I didn't need a doctor or nutritionist to tell me what caused the nightly pain and bloating. I had to take a step back and evaluate my diet.
My main concern is my future with Crohn's. I know that diet won't determine if I have a surgery down the road. But I do know that it can decrease my pain and keep me nourished. Having chronic diarrhea is another way to easily lose all your nutrients. I have to drink more than the suggested amount, because every morning I have diarrhea. I'm not just talking once...or twice...
What I'd really like is donuts for breakfast, pizza for lunch, and a bean burrito with cheese for dinner. I would love to have dessert every night. Whether it be Peeps or a bowl of sugar cereal. I need to face my reality. Maybe now I will really appreciate having sweets once a month. I supposed going without lots of sugar and cheese is a positive change. My body is already attacking my colon. That should be enough in itself to eat healthy and stay away from toxic, processed food! I need to give it all the proper nutrients. I'm the only one that is in control.
For now I will dream of a world of Peeps....

Help is ALWAYS needed

Living with Crohn's can make you feel isolated from the rest of the world. Everyone else can go grab a quick bite to eat, have drinks at a bar, scarf down their Easter candy, and stay away from the hospital. Now, most people with IBD can do these things as well. However, we know that there will be severe consequences. I can't go to Charm City Burger and indulge because I know I will be spending the rest of the evening in the bathroom. I can't go to Chucky Cheese with my nephew and share a small, greasy cheese pizza. But I can join for good company. Yes, it's awful watching people eat what you know will turn your body into a hot air balloon (filled with the smelly kind of gas). Easter will be extremely difficult without my candy-filled basket. Those close to you will try to understand and feel sympathy for you. Maybe they will even partake in your healthy diet. Family is always a superior support system. Right now, living with this disease, you need all the support you can get!
I am a firm believer that knowing someone else with IBD is a great advantage to a healthy future. People with IBD can say with honesty, " I know how you feel." This is why I appreciate organizations like the Crohn's and Colitis Foundation of America. After my diagnosis I gathered so much information from their website: www.ccfa.org. The non-profit organization is dedicated to finding a cure and bringing the IBD community together. They have numerous events year round that allow you to be involved. The seminars are immensely beneficial and informative. Medicine is constantly changing and it's important to keep up with the latest research. The organization gives you the tools to gain knowledge and truly understand what's happening within your body.
My absolute favorite offering from CCFA are the support groups. There are different chapters depending on your location. Right now I am speaking of the South Florida chapter. The group meets the first Tuesday of every month. A CCFA volunteer generally leads the group discussion, but everyone has a voice during the session. You can ask all the embarrassing questions you want. Finally you can see faces of your fellow survivors. This makes you realize you're definitely not alone. People are nodding their heads in agreement, because they've all been there before. Even though the disease affects people differently, it's still nice to hear opinions and recommendations. Sometimes it's even nice to be with other people who can laugh and find the positive in life with IBD.
For me, I leave the group feeling motivated. I'm ready to control the disease and not let it take over my life. I feel ok with feeling sorry for myself from time to time. I feel lucky to be in love, lucky to have a life. I look forward to the next support group session. I feel like I've gained new friends who will greatly influence my life. I feel comfortable with the word Crohn's.

The Perks of Crohn's...como whaaaat???

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