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!