And they call it puppy love…..

There's not many positive things about having Crohn's Disease. In the past I wrote a blog to lighten the mood about the very few perks I could find about having a disease. Well, within the last year I found the BIGGEST perk to having Crohn's; a disease that luckily falls under the Americans with Disabilities Act. About one year ago, after my engagement ended, I found myself back to living alone. Oddly the relationships breakup didn't take much time to recover from, but living alone became challenging. I was sick off and on and missed having someone there for comfort. I was fortunate to have family nearby and I made sure that I went to visit my niece and nephew almost every day. That fulfilled a good portion of the loneliness, but it wasn't enough. I still came home to an empty apartment. I still slept in an empty bed. My mother, the wonder woman, came up with an idea that made me the happiest I had been in a very long time. You see, my mom always is on the internet looking up new research and info on Crohn's Disease. She's always looking for an alternative to medicine to better my quality of life. She's my rock. She came across a book called, Do Border Collies Dream of Sheep, by Carol Lea Benjamin and C Denise Wall. Carol suffers from Crohn's Disease and realizes that her dog is far more than just a companion. She realizes that her lovely vivacious dog can also be a service dog. It already possessed the proper qualities of one. So this got my mother thinking…what about a service dog for Carly? I was a little unsure about the idea at first. Only because I wasn't sure if I would be able to handle the work training a dog; especially from the puppy stage to adulthood. Would I be able to truly give the dog the attention it needs being a sick person? Would I be judged by other people and questioned? The answer to all of those is yes. I could handle the training and I could love the dog until the end of time. Also, I knew that I would be judged and questioned, but knew my illness stood strong in itself. No one should dare question my reasonings. My mother and I talked on the phone about it off and on for months. She realized that it couldn't just be any cute dog that could be my companion - I would always live in apartments (well, possibly until marriage); I needed one that wasn't a major barker, and I would prefer a smaller breed dog in case I had to lift them. The big deciding factor would be companionship. I really needed a people person kind of dog. We decided on a Cavalier King Charles spaniel breed. I always felt their faces and eyes made me weak in the knees, but I had no idea just how sweet of a breed they are. We read that they fit the criteria we were looking for to a "T." There were things on the check-off list that we had to consider: no puppy mills, no inbreeding, no pet stores, and no adult dogs. The Cavaliers are purebred and come with a few health risks that we had to be cautious of. This is why we weren't willing to risk having a puppy that couldn't provide its family tree and American Kennel Club certification. We were going in hardcore and it was the only way to do it right! Looking online was challenging, and a lot of places seemed sketchy. My mother would call and find out that the "breeder" wasn't even living in the same state as the dogs - sounded like a fancy puppy mill to me. We finally got lucky! Correction: I got lucky. My mom was visiting friends in San Francisco. She was telling this lady friend all about my situation and how badly I wanted a Cavalier. As luck would have it, she just happened to know a breeder down the street who bred Cavaliers about once or twice a year. She and my mom jumped in the car and took a chance by knocking on this breeders door. She happened to just have a new litter of puppies! My mom instantly found out that the mother, father, and grandfather lived with this breeder lady and her family. Right away that was a good sign. She was also a trustworthy member of the American Kennel Club and had all the proper paperwork for the puppies. My mom began texting me photos of the puppies playing, and happened to come across this female puppy who was the runt of the litter. Next she sent me a video of her playing. I instantly fell in love. I could not stop replaying the video over and over again. I was even crying just thinking about how she could be mine some day. When my mom left the breeders home, she called me instantly and asked me if I wanted her. How could I say no? I already felt this instant, intense connection to her. It just felt right and I didn't want to second guess my feelings. My mom made the deal and she became mine overnight. At the time I was living in Deerfield Beach, Florida. That's quite the commute for an eight week old puppy. I was afraid for her, but knew it had to be done. Apparently Delta Airlines ships hundreds of animals weekly on cargo aircrafts. So this was a piece of cake. The breeder was nervous because she'd never shipped a puppy before. We emailed each other constantly to get each other through it! The day I arrived to pick up Sally ( I came up with her name before I met her), I heard all the animals contained in the back crying and barking. I was SO worried that Sally had been crying the entire trip, and extremely frightened. When they brought her tiny little kennel out, she was as calm as ever. She wasn't making a peep. She was a little frightened, but took the flight like a champ. The moment I took her out, she was overjoyed to kiss and play with me. I held her tiny little body in my hand and pressed my face against hers…over and over. We took her into a grassy area and I just sat down with her, my eyes filled with tears. She was the most beautiful little creature I had ever seen. I knew that my life would change from then on…and it could only get better. Instantly I knew that she was the perfect breed. She already loved to snuggle with me. I couldn't imagine keeping her in her kennel; even though I should have for potty training. Bad mommy. I could tell that she knew I was her mama, and she never wanted to part from my side. She was amazing with my niece and nephew, and she would never hurt a fly. She's so friendly that she'll jump into anyones open car door; something to which I must work on in case somebody ever wants to take her home! She would rather be in the company of people, and never cares to have a moment alone. Most importantly, she makes me feel complete. There are days where I can't get out of bed and Sally will lie with me the entire day. She rests her head on my chest or lies her entire body in my lap. She crawls up and spreads her entire body over mine and pushes her face under my neck. Her warmth is consoling and makes me forget momentarily that I have a disease. I can see people question and judge me when she walks around with her service dog vest. I try my best to ignore them and remember that I would never cheat the system, and this is the BEST perk about having a disease. I try to remember that I deserve to have something as beloved as Sally. She's only a year old, and still has a lot of training to do to become a successful service dog. However, in this moment she is doing pretty darn well as a puppy. I've read all the laws hundreds of times to defend my case against anyone who wants to question it. She's an emotional support dog, a service dog, a companion dog, and a love bug dog. Call her what you'd like. My life with my disease would be so much more difficult without her. No one will ever take that precious feeling away from me. Even if Sally's life isn't until my end, she will have been loved and had the best darn doggy life out there! I love her so hard every day and will continue to do so. I can't emphasize to other Crohn's patients how much better you feel when you have a companion such as a dog. If you're an animal person, I wouldn't hesitate. Sometimes I think that motherhood must be a million times more intense, because I can't imagine loving something or someone else that's mine like how I love Sally. She's my baby. The next man out there better watch out. He's got a lot of competition. Ha!

Forever In Their Debt

I was hoping that by my next post I would have good news to report. I was hoping that it would be bragging on and on about the improvements I've had with my health. However, I've decided that I can't not write a post purely because things still aren't going well. It's been extremely rough, and some days seem worse than others. So much has been on my mind that I was finding it difficult to pick one topic. I think that in my conclusion it will be about being jobless, lacking independence, and never being able to pay people back for the great deeds they've done for me - but I must say that at times I know my words will go astray. I'm feeling down. I'm having daily, correction: hourly pain. I've been given another drug, with more side effects. I'm finding it almost impossible to still lose my prednisone weight; and the moment I saw "weight gain" as a new side effect, I broke down in tears. I'm wanting to give up on these daily battles. I'm finding it hard to find anything enjoyable in life these days. Day after day is more painful than before. Yet, I'm not someone who can give up easily even if I wanted to. I fear death in all honesty, and I WANT things to improve - even when life gives me lemons day to day….. I've been finding it painful to realize that my life now depends on other people. Back in January I had to leave my job because I was missing so much work. My FMLA leaves were piled high, and my income was amounting to nothing - I couldn't survive. My mother and stepfather were gracious enough to allow me to move in with them in Santa Fe, NM. I packed up my apartment in Florida and drove to New Mexico without looking back. They told me to focus on getting better, and not stress the expectations from society. It sounded calming. But why am I not feeling calm? Why is this bringing more stress upon me then ever before? It's because I feel alone. I feel like I've completely lost my independence. I can't pay for my own groceries, let alone a toothbrush. I'm grateful that my parents give me an income, and graciously give me the things I need and sometimes simply want. But I feel guilt. I will never be able to repay them. I probably will never be someone who makes millions of dollars. I'm not saying that I don't have the potential to do great things in life. That's not it at all. I just know that if my future continues down this path of chronic pain and disease, it will be nearly impossible. I don't want to be where I am at the moment, yet I can't make change happen. Change requires money in this world. Change requires planting yourself somewhere else and being able to eventually accommodate your living expenses. Hell, how can I see change in my future? It sounds so negative, right? Yes. I'm not wanting to be negative. I'm just being realistic. I can't afford Crohn's. I can't afford Fibromyalgia. I can't afford Endometriosis. I can't afford being sick. All I want is to be able to afford it all, on my own. It's so rotten how expensive my disease and medical care is. What would I do without family help? I'm close to 30, and I feel as though I've completely failed at life - the best years of my life that is. I know there's plenty of people out there who "know" someone with Crohn's who is working and doing just fine. I know that people would just tell me to suck it up and work hard like everyone else. Little do they know that I would give EVERYTHING just to work a 9-5, 6-3 - whatever hours - job again. I would give everything to walk the halls again of The Boca Raton Resort and Club - coordinating the beautiful events! All I want is to wake up and feel the energy of an every day person. I don't know if I made a mistake picking up and leaving my life in Florida? I do know that it's made me feel lost. Being sick comes with so much emotional baggage that it can be extremely overwhelming. I know there are many people out there, just like me, who feel like a child living in an adults body. I know that I will never be able to repay my family in love or money. I'm hoping that down the road I will get a break. Something's got to give, right? As for my family and their love, I will forever be in their debt.

What do you see when you see yourself.....

This may be one of the most difficult blogs I've ever written. It's an immensely sensitive subject, but one that I know other IBD patients face on a daily basis. I want to talk about body image and self esteem. Please don't read this and think that I'm fishing for compliments, or exaggerating about my emotions. I want this to come off as pure honesty. Please see my vulnerability as genuine. Once you are diagnosed with a chronic illness a lot of things change. I always felt that I was a pretty confident person. In high school I was energetic and full of so much life. Of course I had my moments of insecurities, but nothing like today. Not even close. I grew up dancing. A lot of times you'd think that your body image would be distorted because a dancer is supposed to have this perfect, ideal physique. I suppose there were times that I would look at other girls and wish I had their skinny, ballerina thighs. However, I was literally dancing five days a week, and I was in great shape. I never could see myself eating cotton balls, or throwing up in the bathroom. I was more concerned about other teenage topics - especially boys! During college it was difficult because I had gone all those years having my parents take care of me. I gained the freshman fifteen, but always tried to do something physical to stay in shape. The extra weight never bothered me too much. However, my last year in college I fell in a deep depression. I didn't know what I wanted from life, my heart was broken several times, and I didn't love myself. I gained 40 pounds quickly, and almost went into a trance about it. When I looked in the mirror I didn't see a fat person. I was too involved with being unhappy about everything else. When I left college I worked hard to regain my self-esteem. I wanted to feel worthy of life. I began exercising often and focusing on truly loving myself. All of my self. I was in the best shape of my life. When I would go for a run I felt jolts of positive energy through out my entire body. It was amazing. It was amazing that I could look in the mirror and see what I've become. October 2010 I got the news that I was diagnosed with Crohn's disease. Ok, this is something I can live with, I told myself. I can do my best to carry on with my normal life. I never imagined that so much medication would suck the life out of me. Moving from the bed to the couch, or to the car would be exhausting. I lost a lot of weight from barely being able to eat. My mother would come take care of me, and force me to eat a slice of toast, homemade chicken noodle, or at least one egg. She knew how important it was for me to put nutrients into my body. I easily could have gone weeks with nothing but sips of water. I was so weak I wondered if I could ever be myself again. Could I laugh with my family and be the "crazy" Carly everyone once knew? I was furious as to what Crohn's had done to me. Then I fell in love. When you're in love, you kind of put aside all the bad things you feel about yourself. I had someone telling me I was beautiful. It was enough for me to get by, and not completely dislike myself, just the disease. When the relationship ended I went back into my hole. I was willing to stay there and hibernate….forever. My darkness got the best of me, and I'll never know if that contributed to my flare, but I do know that it didn't help. I was again put on steroids and gained 10 pounds in two days; then an additional 2-3 shortly after that. Prednisone is a terrible drug, but during desperate times you will take anything. My face swelled up, and my stomach bloated. I couldn't fit into any of my clothes. I felt guilty, as if I had let myself go. I would get angry, then the next minute cry at what this disease has done to my soul. I didn't want to see my reflection. I would look at my shadow and think, wow, even my shadow has big thighs. It was life changing. The depression sticks, and it doesn't just fade away once you're off the drugs. It's a challenge that IBD patients deal with constantly. We never know if our pants are going to fit. We never know when the next day will be where the doctor hands over a prescription for more steroids. We never know when our bowels will give up on us, and vanish all the nutrients we need to survive, making us skin and bones. We just hope that we wake up and have enough energy to love ourselves, just for one day. It would be beautiful to look in the mirror and not see a distended, bloated stomach. It would be nice not to focus on my thinning hair from my medication. It would be nice not to feel guilty for being concerned about ones vanity. Gosh, it just would be nice to wake up and truly love the body you've been given; in its entirety. But this is the the way I will live forever….there is hope…and one day there will be a cure. *I would like to thank my fellow Crohnies: Christina and Jeremy. They've always given me the courage to move on each day. Thank you for always thinking I'm beautiful, and understanding the moments when I don't see it.

New Path

I will be 30 after the new year. I know 30 isn't old. It just feels like I will be an official adult, and officially a WOMAN. In my twenties I see myself as a young adult, but when I look in the mirror I see a teenager . I am starting to think that maybe age won't really hit me until I see those wrinkles. I also think my perception of my age stems from my insecurities. I am 29 and living back at home with my parents. I am currently unemployed, and I'm struggling every day to live with my diseases. I don't have a husband, a child, or a booming profession. I always classified those things as adulthood, and womanhood. But lately I've learned that there is no right way to walk into adulthood. Sure there's guidelines that we all follow to be perfect in society: school, hobbies, high school, SATs, college, travel, more college, husband/wife, kids, more kids, big house, nice car, and buy a family dog. But we all know that it's impossible for everyones path to go like that. My path was pretty by the book until after college. A chronic illness like IBD can definitely stop the direction of your path. It definitely did for me. Recently I've been having to deal with my new path. I know this isn't going to be the last, but the first of many. That's life. I didn't want to necessarily be sick, indigent, alone, and have to go back to living at home. It made me feel weak and embarrassed. These past few months I have been so angry at Crohn's. I'm not taking money from my parents, and mooching off their groceries because I think it's a fun, free ride. Every day I wake up and wonder when I'm going to be able to be something again. When will I be able to buy my family dinner? Better yet, the day that I can pay my medical bills without any assistance will be the best day. But right now, I'm still going to blame the disease. I'm also going to rise my fists and say it's not fair. Pity party. I'm trying hard to have a clear vision of my future and what it can be like. In my mind I will factor in Crohn's, but it will not be top on the list. I am extremely grateful to my family for their support. I think when you're experiencing a new path, the people you surround yourself with is VERY important. I can happily say that my mother, stepfather, father, brother, and three sisters (Kyara you ARE my sister), all understand my disease, and understand that I'm struggling. I don't have to give them big explanations as to why I'm not feeling well. They don't try to force me to do anything I'm not up for. It's truly amazing how families work. There's no other love like it. Then there's that amazing Crohnie friend that knows exactly what you're going through. That person can literally relate to everything. I have that special bond with my fellow Crohnie Christina Ray. She's my rock. Where I struggle, is with outside support from strangers, acquaintances, and friends. I'm not wanting any of this to come off like I dislike people or even dislike my friends. Also, saying struggle is not meant in a negative tone. I just want to express all who surround and affect me during my new path. Not everyone knows info about Crohn's Disease or Fibromyalgia. I completely understand that. I had only heard of it once while in college, and even then I still had no clue how it affected a person. So I know it's not easy for someone to have a friend recently diagnosed with this disease, and not understanding what she's going through. You can maybe pull up a Google search and scroll to Webmd.com, but even that info will just give you the Cliff's Notes. It's not going to have a breakdown of an average day for a Crohn's patient (particularly a bad one). It won't tell you that the medication used for Crohn's is a form of chemotherapy, and in some rare cases can cause lymphoma. It doesn't say that your hair can fall out or thin drastically, or that you can develop ulcers all around the anus - feels like chards of glass when you're trying to have a BM. They don't tell you that Crohn's can trigger so many other terrible things, like arthritis, or colon cancer. Sometimes patients like me, end up with 3 conditions: Endometriosis, Crohn's Disease and Fibromyalgia. Crohn's can affect a person from their mouth to their anus. People don't know about the other parts of the body being affected, not just the colon; it involves the skin, joints, eyes, spine, liver, and ulcerating skin. The list goes on. They call this the invisible disease because a person can physically look normal or "healthy." When we're at our sickest and unable to hold in food, people love to say, "oh you're so thin, you look great!" That comment would make a Crohn's patient run in the bathroom and cry. She's probably trying everything in her power to gain weight, and get nutrients into her body. We always get the comments of "well, you don't look sick." The worst is when people tell you they know someone who has irritable bowel syndrome - so not the same thing. Or they like to tell you how they know someone who has Crohn's and is PERFECTLY healthy. Well, good for them. I don't need to hear it. Whoever that person is who is telling you that, is most likely lying. Sure, maybe they are having a good run, but they still have those bad days, and they sure as hell remember the flares like it was yesterday. They also probably didn't want to get into a Crohn's conversation with you. Also, people don't realize that when we say we're not feeling well, we MEAN we're not feeling well. Let it go and don't take it personal. I've never in my life had to cancel so much with friends, doctors, and family since I've had Crohn's. Oh, and if you see that I was out at the zoo with my niece and nephew one day, that doesn't mean I'm cured. Maybe I had a good day, or maybe I had to pop so many pills just to get out of bed. So I was walking around the zoo, thinking the animals were speaking to me. I'm not perfect, and I know other people do make an effort to understand what I'm going through. I do truly, and deeply respect my friends who try their best to understand my bumps in the road. Because hopefully they remember that the other Carly is still there. My soul hasn't died because of this disease. I may not be the fun, loud, obnoxious Carly who likes to shake her booty, at this time. But that girl will come out…..even if it's once in a blue moon, I'm still going to be that girl. So I just hope that people respect my necessities to get through this rough patch, and to voyage onto a new path. I am just done with feeling guilty for being sick. I'm also done explaining myself. If I can accomplish those two things, I think my first few steps are on the right path.

Time to deal

It's been a challenge to begin a new blog entry. Part of me feels the depression of Crohn's had taken over my life, and I couldn't imagine writing a blog that was anything but negative. Who wants to hear someone bitch and complain for paragraphs on end? During this time, I've felt that no one would want to hear it. I mean, in the past I've told myself that these entries would be an outlet for ME. I shouldn't care what other people think, and I should't feel judged. Blogging allows a lot of freedom with writing. However, sometimes the dark days take over and all I worry about is what other people think; even though there are a select few who truly understand and care what I'm going through. I just know that the fastest way to lose friends is to get sick. I don't think that people intentionally disappear from your life. I just think that it's an uncomfortable subject. Most people are used to hearing about their friends relationship problems, or family issues. But most people don't know how to handle a friend whose life consists of bad days, doctors visits, and an immense amount of physical pain. They just simply don't know what to say to them. Plus, I imagine it's difficult to see your friend in a different state. I remember when I was extremely outgoing and energetic. I always wanted to be on the go. I know that person is still somewhere inside of me, but physically it's exhausting trying to be a fraction of that person. I know eventually my medical issues will settle and allow me to be myself again. Right now it's just not happening. No matter how hard I try. If it isn't Crohn's, it's something else. Since February I have been struggling with terrible joint pain. It's been so bad that it's debilitating. After seeing several specialists, even in different states, I've been diagnosed with Fibromyalgia. Some people may think it's an illness made up in someones head. But it is truly a real disorder and it's not fun. I've been working with doctors to be sure that it's something not relative to my Crohn's. It appears that it has accumulated over time and separate from my IBD. I guess I'm just one of those people who are lucky to have both. Aside from Crohn's symptoms affecting my life, Fibromyalgia has put a huge damper on my social life. The fatigue is endless, and the aching is constant. It's just easier to stay home. But now I have to deal. I have to deal with cards I've been given, once again. I have to deal with reality and not hide out from the world. I'm starting again on this blog in hopes that it will progress as I do with my life. I want to see improvement and changes in my life. I don't want to cast it aside and hide from everyone. I know there will be bad days, and plenty of days where I whine, whine, whine! But my hope is to have more of the positive days where I've defeated the obstacles.

*(photo not taken by me. Found through Google)

The C Word

I woke up from my colonoscopy completely dazed and wondering how my rear would feel. I remember receiving the anesthesia and thinking, “I can’t believe this doctor is entering through my ass.” Little did I know that I would have years to come of several moments like that morning. When I woke up the doctor gave me the diagnosis and handed me a prescription for a thousand pills. Of course there was no discussion as to what to expect while taking these meds. Within the first few days I began noticing that I walked around with a polluted mind. I was so drugged when I had my first follow-up appointment after my colonoscopy. I had so many questions to ask about the medication and disease; however, when I arrived I blew it. I could barely focus, let alone read the list of questions I had written. The doctor and nurses found it amusing that I was so stoned. My mother came to the appointment with me, but still didn’t know much about Crohn’s either. When we left she told me that we would have to begin our own research. I would have to arrive to every appointment with a list of my concerns and demand answers. I had no idea what the plan was after Prednisone. I knew that the steroid seemed to bring down most of the inflammation, but was not a good long term drug. After my first hospital stay the doctor recommended Cimzia. The doctor gave me a brief explanation about the biologic. He was in a panic to administer my first shot. Still being on Prednisone, Bentyl, and Apriso, I agreed to anything. It wasn’t until after my first dose that my family and I began reading the details on Cimzia. The biologic was still fairly new, and the drug seemed to present a lot of hope for Crohn’s. I briefly read over the possible side effects; I agreed to take the medication. With some time I began to realize the impact these drugs would have on my life. I began joining several IBD forums to hear what others had to say. I heard all the positive and negative views on all biologics. Then I began reading comments about lymphoma, hair loss, and liver issues. Ok, so maybe doctors don’t tell you about lymphoma because it’s such a small percentage? Maybe they don’t give you the load of side effects, because they don’t want you to freak out every time you don’t feel well? It wasn’t until my first CCFA seminar that I felt the full reality of this disease. I heard about death rates, lymphoma, colon cancer, and ostomy bags. I realized that the few biologics out there have a caution list the size of Texas. I later moved on to Remicade. Man, did I ever hear horror stories about Remicade. People on the forums either loved the drug or hated it; no one was on the fence. I went along with the routine blood work, and I always crossed my fingers for positive results. Every infusion I went in thinking that it was a piece of cake. I would be tired or flu-ish for a few days, but the pay off would be worth it. Now I am experiencing my recent scare. If I had to compare it to my fistula experience, I’d say it was similar anxiety and panic. No one likes when something bad occurs for the first time and is an unknown symptom. I woke up with an enlarged lymph node in my neck. For over a month I have also been experiencing night sweats. The kind of night sweats where you HAVE to get up and change your clothes. I always feel fatigued: even though my B-12 and vitamin levels are close to normal. Certain days I have hot and cold flashes; however, some days I’m completely normal. You would think I was still taking Prednisone! It was time to call the doctor. At first Amoxicillin seemed like the fastest solution. I was convinced I had mono. After all, the symptoms matched perfectly. The blood work showed I was a carrier of Epstein Barr Virus, but that it was presently dormant. Phew! My specialist in Miami didn’t like me taking the antibiotics because it can trigger a flare. I went ahead and finished my dose and went in for an ultrasound. I felt like death. I almost cancelled the appointment, because I noticed my lymph nodes swelling had gone down. I went ahead with the appointment, because I thought it couldn’t hurt. The ultrasound tech can never tell you what she believes to see, or what she KNOWS she sees. She just kept saying, “Is this the area that it was very swollen? The doctor will probably call you back into the office, just incase.” I left the office a little disturbed. I thought everything was fine. That lady was beating around the bush like no other…just give it to me straight! So then I had the discussion with my nurse: my GI doctor and the radiologist are sending me to an oncologist. I’m sorry, don’t they deal with CANCER?! You can’t be serious? Ok, well clearly this is all a precaution because I’m taking Remicade. Oh no wait…I’m taking Remicade and Imuran. They are two lovely drugs that both can cause lymphoma – just a small percentage (as the doctors say). It’s one thing taking these drugs to help my Crohn’s; however, it’s another taking them for life and having constant scares of its side effects. It sure does feel like one thing after the other. I will have a biopsy this week, unless the oncologist really feels like it needs to be removed, according to the nurse. I am positive that the results will be negative. I just can’t help but to be nervous…just a little. I think it’s time to try those worms!!

Too bad my shit isn't invisible!

People often refer to Crohn’s Disease as the “Invisible Disease.” I couldn’t think of a more perfect nickname. Invisible refers to the internal pain that we deal with daily. People don’t see any dramatic, exterior changes like those who are in a wheelchair, or use a walker daily. I believe that I’ve learned to deal with every day pain. I can probably tolerate pain better than most, mainly because there’s not a day I live without having pain in some form. I do my best to carry on and appear “normal.” People then like to make the assumption that I must be 100% better. The infamous, “you don’t look sick!” “Look, she’s playing with her nephew. She doesn’t look that sick.” “She did her hair and makeup…she must be feeling better.” “It’s all in her head. She seems fine.” “She just needs to be very strict with her diet.” “She needs to just get off all those medications. I know someone who did it, they’re doing great!” The best is when people judge what you eat. When you mention Crohn’s they automatically assume that it’s ALL in the diet. So if they see you take a nibble of something they believe is bad, well, they assume you eat like shit every day! It’s like us Crohnies feel sick because we’re making ourselves feel that way. That’s my favorite: being judged. Invisible means that most of us can carry on with life, work a full-time job, and have a social life. However, for me that requires eminent effort. I have never been able to just jump out of bed. In fact, I can sleep until the cows come home. I will wake up and feel like I’ve never even slept. Most people my age have the energy to climb mountains and party in Vegas. That’s where I struggle. I want so badly to be an average twenty-something, single woman. Before my medication and treatments I was far more outgoing. I was in better, physical shape. Once I began Prednisone, Apriso, Cimzia, Imuran, and Remicade, my energy deflated. Slowly I started watching it decrease. At my age it has an impact on my future. I want more than anything to maintain a career. I want more than anything to have a successful relationship and someday raise children of my own. Some people think they can handle dating a person with Crohn’s, and then later see that it’s not that easy. I know for a fact that my ex-fiancé wanted a more eventful life. He was too young to realistically settle, and my disease was a lot to handle. I did my best to keep up at times. I knew that he secretly felt I would always exaggerate my symptoms. Men like to think we use Crohn’s as an excuse to get out of intimate situations. That’s far from the truth. When I experience pain, there’s nothing I want more than to take it all away. I’d rather be camping in Big Bend, or swimming in the ocean. Trust me. If anyone in the world needs to realize it’s an invisible disease, it’s your partner. The reality is that people don’t know about Crohn’s Disease. It’s not something that comes up in conversation, nor is it studied in the classroom. A lot of people don’t even feel comfortable discussing their disease. Crohn’s isn’t exactly something you can bring up for conversation at dinner. “Can you pass me the beans?” However, it’s not just the physical aspects of Crohn’s that affects our daily lives. Your friends and family may not even realize that Crohn’s causes depression. Depression can definitely be invisible. Some days you’re physically and emotionally drained from having this disease. Some days I get so angry having to deal with pain, and other days I’m just sad. Sometimes I don’t have the energy for anger. It’s easier said than done to take charge of Crohn’s and not let it rule your life. I would like to have a t-shirt for every day that explains how I’m feeling…. Monday: Dehydrated. Dizzy. Weak. Don’t talk to me! Tuesday: Body feels like it’s bathing in needles. Wednesday: Feeling ok…don’t tell me I don’t look sick! Thursday: Lunch didn’t sit well. Don’t talk about food. Friday: My gas will blow you away…literally. Saturday: I can’t party. Sunday: Sunday is not fun-day. Just sayin’…

Double whammy!

Every time I go into the doctor, I have to hear that I’m a difficult patient. I know my doctor has a great sense of humor, but I also know there’s still some truth behind his statement. Now, I live in the Boca Raton area; which means there are A LOT of older, retired people within the community. I have sat in the waiting room and can hear his visits with other (older) patients. I can’t imagine I’m REALLY the worst! Just because I walk into the office with a list of questions, does not mean that I’m difficult. Most of the time I forget to even ask half of them. I feel like they’re always so rushed – I get nervous. I’ve only had this disease for one year. There’s still a lot I can learn. Ok, that spiel was just to preface my recent doctor’s visit. I finally got the approval to proceed with my endometriosis treatment. It was delayed because I developed a perianal fistula. Now that the Remicade has temporarily closed the fistula, I’m ready to party! Me=liar. Anyway, as my doctor said, I’m lucky to have a double whammy! I have both Crohn’s Disease and Endometriosis. I deserve some kind of metal. Maybe this is why I’m a doctor’s worst nightmare – too much to handle?


I will give you a quick Wikipedia definition of Endometriosis: a gynecological medical condition in which cells from the lining of the uterus (endometrium) appear and flourish outside the uterine cavity, most commonly on the ovaries. Anyway, I’ve done my research which suggests that several women out there have both. Endometriosis still isn’t classified as an auto-immune disease, but is identical in physical symptoms. Most patients with Endometriosis experience symptoms similar to Irritable Bowel Syndrome, Crohn’s Disease, Gastritis and other GI issues. This makes it difficult for me to determine which of the two is causing me pain. The profuse pelvic pain is often confusing. At times, it feels as if it could possibly be abdominal pain – which would be my Crohn’s….right? You’d think I would know the difference between the pain in my female organs and my bowels. BUT they are practically neighbors, come on! Before I was diagnosed with Crohn’s, I always blamed my pain on endo (my new abbreviation for endometriosis). I thought it was the only true issue I had. Fatigue, diarrhea, cramps and constipation are side effects of endo as well. So why wouldn’t I think those every day symptoms were nothing more serious?
I had a laparoscopy back in 2008. It was an invasive procedure, but definitely felt like the worst period I’ve ever had. However, it wasn’t until this last year that I’ve noticed my symptoms coming back. It was such a nice relief to have no pelvic pain for close to 3 years. Sadly, endo is like Crohn’s in the sense that there’s really no cure. I could do a million laparoscopies and it would still come back; maybe four months after surgery, or maybe five years. There’s medication out there to slow down the process, such as Lupron Depot that decreases the amount of estrogen your body produces. All right, so what’s another medication? Well, treatments such as Lupron come with a bundle of fun side effects: hot flashes, increased sweating, night sweats, headaches, breast changes, acne, trouble sleeping, and joint/muscle pain. Wow, sign me up! As if my Crohn’s medication wasn’t bad enough. I’m 27 years old and I really don’t feel like going through fake menopause. I can just see myself at 3am running into the kitchen, sticking my head in the freezer. No thank you. I love my mother, but I saw the crap she went through. I am not ready for that. My time will come. For now, give me a break. I already had the mood swings with Prednisone. I want to keep my fiancé, if you catch my drift.
It will be nice to see if there are any improvements with my daily symptoms after the laparoscopy. I know the pelvic cramping will diminish, which is rewarding in itself. But I can’t wait to determine if the endo has been bringing my GI pain as well. The New Year is upon me and this surgery will be a piece of cake…I hope. Cheers (non-alcoholic beverage kind of cheers), to feeling better!

Broken Record. I know..I know

I haven’t blogged in quite a while; mainly because I’ve been feeling better. Even though Crohn’s is on my mind daily, I try my best to move on with life. My focus was to not let it consume the lives of those around me – especially my fiancé (I know I say this a lot). I don’t want him feeling like he’s living with Crohn’s! It’s bad enough that he sits with me every 4-8 weeks for my Remicade infusion. I pass out, totally drugged on Benadryl; while he is wide awake observing all the IV patients. Not exactly the most pleasant way to spend your morning. But at least he gets to drink my apple juice and eat my free turkey sandwich. It’s really quite tasty! I sound like a broken record…..
This past month I’ve had a lot on my mind. I may not have every day jolts to the restroom, but I’m still experiencing medication side effects – this is generally why I’m reminded daily of having Crohn’s. So it seems like even if my colon is semi in remission, I will always be suffering with something else. It’s this awful chain reaction of side effects. It’s a coin toss really. One week I will experience bad headaches, another I will be a walking zombie because I’m so fatigued. Now between the medication side effects I still experience the encyclopedia symptoms of Crohn’s: stomach cramps, bloating, gas, constipation and exhaustion. However, I feel living a life with any kind of daily symptoms is annoying enough and hell. Now, does this mean that I need to get off ALL medication in order to feel normal? If I asked a doctor, the answer would be: no. I know that going untreated may result in more colon damage and inflammation. We’re supposed to trust in our doctors that they have weighed the benefits and risks of giving you these medications. However, they can’t predict how your body will react to them at any given moment.
I’ve been on the maximum dose of Imuran for a while now. Reading any literature on azathioprine is intense. I can’t focus on the positive, because all I see is Hepatosplenic T-Cell Lymphoma. As of 2011 the FDA is now updating the number of cases of IBD patients who have been affected. I’m just crossing my fingers it hasn’t increased. At the CCFA seminar, my Crohn’s doctor spoke about new upcoming treatments and current therapy. She believes that having someone on a TNF blocker and Imuran greatly helps the patient stay in remission. So clearly she believes that the benefits outweigh the risks. Personally, I’m on the fence. I trust and confide in my doctors. But they will never fully take away my fear. I would like to know the results of longevity taking these medications. It’s common for IBD patients to eventually need to switch medications. I haven’t heard of one Crohn’s patient being on the same medication since their diagnosis. So I want to know the reports on what happens to people taking these medications long-term. Are the ones developing liver toxicity and lymphoma ones who have been on the medication 10 plus years…or those 2-5 years? Or is there really no correlation between longevity and extreme side effects? I’m sure there are numerous articles out there about Imuran and TNF blockers. I won’t give up on my research. It just really feels like the people you should get the answers from (doctors) never really want to spend the time going through details.
Food for thought…chill pill Carly. So how about those baby wipes?????

Weighing Your Options

Even though it has not been a full year since my diagnosis, I have already approached a point where my medicaiton has stopped working. I know everyone is different, but I still feel like it's too early to have already eliminated one option. Yes, there are a few biologics, immunosuppressants, and alternative therapies still out there to use. However, this disease doesn't have cure...yet! So there are only so many medications to try in my lifetime! I personally plan to live until I'm about 100, but I may be shooting for the stars.

Prednisone seems to be the go to drug when a bad flare occurs. I know from my
experience of being on it for 7 months, I hesitate to take it again. I would rather take it for a short period of time; only if it's necessary. The withdrawal process is tormenting. The biologics tend to be successful for certain people. However, your body can still develop antibodies. This may cause you to stop having a positive respnose from the anti-TNF drug. If later down the road you decide to try the biologic again, your body may still have those dismissive antibodies. In that case, the drug will never be an option again. That's a freaky word: NEVER! I've heard wonderful stories of people being able to take the same biologic years later and having success. Let's all cross our fingers we don't run out of options. Otherwise we'll all result to plain ole' steroids. Which give us beautiful, fuzzy faces, puffy cheeks and fatty tissue where it doesn't belong. Where no body wax, or cleansing facial can do justice.

I've been taking 400mg of Cimzia, since October 2010. I've had a positive response to the biologic until these past few months. My stomach pain has been settling; however, I've developed a fistula. Fistulizing disease is common within Crohn's patients. I thought that it was unrelated to my current treatment. Especially since the fistula is a totally different pain than I'm used to having. But according to my GI doctors, it seems like the Cimzia isn't working to it's full potential. A fistula shouldn't have formed. So there goes the ease of at home, administered shots! Also, I am taking 150mg of Imuran. This drug tends to help inflammation with fistulas - not necessarily close them completely, but help with formation and healing. The last bloodwork I had showed a lack of a therapeutic response to the drug. I'm hoping my next test will show a positive response. So with the fistula, the next best medication seems to be Remicade. It has had a low-risk safety profile for extended use. I've also tried the "quick fix," by taking 500mg of Flagyl and Cipro for 30 days. The two drugs will bring down the inflammatiion and kill bacteria, but never close or permanantly heal a fistula. Definitely not something you want to take long-term. By far the foulest antibiotics known to man. I felt like I was sucking on a penny all day. I also had constant shakes and chronic diarrhea (without the stomach pain...that's the only plus). I had the time of my life on those antibiotics - more like horse pills!

So now that I've gotten the list of my medications out of the way, I can now discuss my issue. Don't we always have an issue living with IBD? My list of medications may not be as massive as other people living with IBD for a longer time. For me, it feels as if I've taken enough medication for a lifetime. I like to weigh the pros and cons of every medication before I begin the treatment. I'm a Google freak. I will obsess and read as much information that my brain can process. I will go through a cycle of emotions reading the medication guide: content, scared, freaked, anxious, relieved and bitter. There is an odd catch-22 that happens when you first start a medication. You are hopeful that it will ease your disease, but fearful of all the side effects and long-term damage. When I began taking Imuran I was still in a terrible flare. This made me jump on the medication without blinking. I don't think I would have been happy to go back on Prednisone, but I was more than willing to try Imuran. I was aware that it could affect my liver, pancreas, and hair growth. Most doctors give you a quick recap of the risks. So quickly that words like: cancer, toxitcity, tumor, lymphoma, infection, and tuberculosis breeze through your ears. The only word I hear in the end is: death! So then you're left to comtemplate the true benefits of taking the medicaiton. I want to feel good NOW, but I don't want to jeopardize my health for my future (a friend of mine said those exact words to me too - us Crohnies think alike). Sounds like I want a lot, right? A doctor can't predict your bodies reaction to these medications. They can only see if they feel it's safe to begin. Sure, they'll gaugue your bloodwork and ask how you're doing every 6 weeks. They just won't understand the daily side effects that take a toll on your body. I remember asking my doctor, a Crohn's specialist, if Imuran was causing my hair to thin. She said it was just from being sick. Almost every Crohn's patient I talk to taking Imuran has hair loss or thinning. Coincidence? I think not! Statistics may present one thing, but hell, we sure experience a million others. We're the lab rat...guinea pig...the medical fields experiment.

I suppose it's always the right time to start asking your GI a million questions about OTHER options. I've been studying on helminth therapy (hookworm, or whip worm treatment). The positive aspect of this treatment is the little side effects, and close to 75% of people experience remission. The worms can be killed instantly if there is an issue. However, that is still a controversial issue among U.S. doctors. Because it's not FDA approved, they can't necessarily recommend the treatment; however, some doctors will verbalize how they feel it's pure bullshit. My main concern is having a doctor who is willing to stil treat me for Crohn's and acknowledge the worm therapy - doesn't matter if they accept my decision. Now, do I do the biologics for life? Have these drugs truly had accurate findings of long-term use? Especially since some are fairly new.

I'm officially dizzy. Maybe the dizziness is from the Crohn's, or the medication, or my confusion...? Maybe someday I won't have to take any pills, never give myself shots, and never have to step foot in a chemo whard for infusions! Now, is that really too much to ask for? Nah, I think everything is possible!

That Normal Feeling (for the most part)

It's a wonderful feeling to be close to remission, or in remission - my awaited bloodwork results will tell me soon! This will be my first time since being diagnosed October of 2010. I'm not aware as to how long remission will last, but I'm crossing my fingers it's years. Being able to go an entire day without abrupt stomach aches and chronic diarrhea can completely change your mood. I would dread each morning, and fear breakfast - my favorite meal of the day. The diarrhea would cause severe dehydration and joint pain. After my morning "attack" I had such a difficult time functioning the rest of the day. All I wanted to do was sleep and regain my energy. Today is a brighter day.
I am able to have a regular diet, for the most part. Of course it's important for me to maintain a balanced diet. I am still staying clear of gluten, because I have found that it causes extreme bloating. I also try to limit my sugar intake and eat clean, organic foods. BUT if I decide I want a few nibbles of something sweet I will not hesitate. Eating a well balanced meal including all food groups assists me in having formed bowel movements (was that too much info?). Now that is a reward. Sometimes a movement can still cause pain because of my anal fissures, but at least it's solid! Strong like wood! Also, I'm spending less time in el bano. The toilet and I don't see each other too often. I'm not too broken up about our new relationship.
The other benefit of remission is less doctors visits. This has also helped my monthly budget...greatly. When I'm in a flare I see so many doctors in a month. That's a lot of copays! Now I can go for my monthly check-up and not have a list of things to talk about. Sure I could alawys ask a million questions. Like....
"Are you really sure that I have Crohn's (denial)? When am I due for another colonoscopy? Am I taking the right amount of supplements? Is this hair loss normal? Where has my energy gone? Again, are you SURE I have Crohn's?" I could easily drive my doctor crazy talking about all the symptoms I feel with this disease. I also drive myself crazy.
There are always current things that arise with Crohn's. I was just diagnosed with a perineal fistula. I was put on Flagyl and Cipro, which are strong antibiotics. However, I'm still not having the attacks. Most likely the flu-like symptoms are from the fistula. Next week I'll have a boost of Cimzia, and see my Crohn's specialist. I am hopeful and remaining positive. The hiccups that occur in Crohn's will never be easy, but how I deal with them will make the difference. Hope sounds so cliche, but it's something that I must have...always.

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

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.