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

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.

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.