Saturday, December 17, 2011

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 fiancĂ©, 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!

Friday, October 28, 2011

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 fiancĂ© (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?????

Saturday, August 6, 2011

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!

Saturday, July 2, 2011

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.

Sunday, June 5, 2011

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

Saturday, May 14, 2011

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!

Saturday, April 30, 2011

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!

Friday, April 22, 2011

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!!!

Tuesday, April 19, 2011

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....

Wednesday, April 6, 2011

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.

Friday, March 25, 2011

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

Wednesday, March 16, 2011

No, you're a colon!

This post was originally from my blog "What's with today, today?"


Life likes to throw darts at you…
Dodge them.
Catch them.
Don’t let them hit you where it hurts.
I’m not one who likes to complain about the deck of cards I’ve been dealt. I can accept it, come to a compromise and move on.
October wasn’t exactly the easiest month for me – turns out either were the last 3 years. I had frequent visits to doctors and the ER. I got used to hearing the diagnosis of Gastritis, Irritable Bowel Syndrome and my favorite, "it's all in your head." It wasn't until I moved to Florida that I demanded a colonoscopy. The procedure in itself is not too bad. You're put under, so the scary thought of someone staring at your bare butt isn't so bad. However, the night before is pure hell. You can forget about getting sleep. You CAN count on spending the entire night with your butt glued to the toilet. Just place some scented candles in the bathroom and a lot of books or magazines. This is generally not a typical procedure for someone under the age of, ohhhh, 40! But this can be a miracle procedure. If it wasn't for that small camera shoved up my butt, I would have waited another three years to be diagnosed. My colonoscopy discovery: Crohns Disease, with Colitis.
Not exactly what I was wanting to hear, but finally it all made sense! Now I have this unpleasant love/hate relationship with GI doctors. My favorite (total sarcasm) was the doctors in Santa Fe. Wow, just WOW! I had a lady GI tell me to "fuc**ing read the labels," she was convinced I had an allergy to dairy. I was "ignoring" whey in the ingredients. Also, she proceeded to tell me that I was depressed and that caused all my stomach pain. Well, heck yeah lady, of course I'm depressed. Everyone thinks I'm a hypochondriac! About four months later I had my gallbladder removed. Thank you for listening Ms. GI devil woman. Good thing it didn't explode and cause even bigger problems. I still want to write you a mean letter giving you a piece of my mind!


I'm a firm believer in the saying, "follow your gut!" I didn't make it up and I had the symptoms for a reason. Generally it takes doing your own research and approaching the doctors. They never want to take that extra step and find out what's wrong. I've been told I'm a GI doctors worst nightmare. I did watch a lot of Freddy Krueger as a child, but I don't think my symptoms were that scary to approach!
I can gladly say that I'm practically in remission and on my way to figuring out how to live with Crohns. My life will consist of medication and monthly injections, but at least now I know it wasn't all "in my head." You still have to be the squeaky wheel that always gets the grease. I still have to do all my research (with love and support from my family). BUT, I will never again accept the cold shoulder from a doctor. Demand what you want. Now I can sometimes laugh about it all and call myself a colon. Bowel movements tend to be the topic of conversation in the Camarena house...live and laugh.

Sunday, March 13, 2011

Ch-Ch-Changes

Every morning my alarm clock goes off and I cringe. I wonder if the day will breeze by, or if I will struggle in pain. I tell myself that it's going to be a good day, and try not to obsess about the word remission. I remind myself of the things that make my life have importance. I have a wondrous fiance who is my rock. My family, whether near or far, are extremely supportive. My endearing mother does everything in her power to make my days better. Having this support system makes Crohn's a little easier.
So why do I often feel alone? Why do I want to vent about all the negativity of this disease? Well, for one, I believe that it's a way of not feeling alone. Also, I've realized how connecting with other IBD patients can bring me an energy of calmness. I'm not wanting this blog to be pessimistic. I want to be honest about the good, the bad and the ugly! If one person reads my blog and can relate, well that's enough for me.

Vent topic for today: change.
My latest struggle, like there isn't enough, is dealing with my new social life. I've always been an active person and immensely social. I would go to class all day, work in the evening, and still have time for friends. I can say with confidence that most of my friends will agree that I've always been an energetic person. Some may call me weird, funny, dotty, loving, and a real piece of work! Today I feel like I've lost my true character. I'm sure it's still under the surface waiting to erupt. Today if I had to replace the words to describe me, I would say I am: tired, grumpy, anxious, mad, and scared. Of course there are times where I'm able to laugh, have fun and be my old crazy self. I just feel that the new me is overpowering the old me. The good thing is that I can recognize that being a grouch is not my normal trait. I can hear my brothers voice right now saying, "Mmmhmm, yeah right!"

I know that several of these new traits are temporary and due to my medication. I won't even bring up Prednisone, because I'm sure EVERYONE is sick of me complaining about it. Anyway, I just am having a difficult time not being able to do what 20 somethings do. Now, I don't necessarily feel I need to go out and drink myself to stupidity. I just don't even have the energy to sit at a club or bar past 10p.m.. Who wants to be with someone who is falling asleep at a bar with ginger ale in their hand? I know there are other things to do besides "party." I just don't even have the energy to do sober, recreational activities. I get tired simply running three quick errands - sitting on my butt in the car! My fiance is always volunteering to be the driver. Probably because my patience is very minimal these days; I've developed extreme road rage. I think I should volunteer at a nursing home and do elderly activities. I probably have the same amount of energy as a 90 year-old (no disrespect to the elderly). Maybe then I won't feel so alone, or feel like I'm losing my friends.

A Glorious Day at the Nursing Home
ME: "Hey Gretchen, I really like what you've knitted today. I hope to see you later at the ice cream social."
GRETCHEN: "Same to you Carly. Thanks for playing penny bingo with us yesterday. You really know how to yell out the numbers! Oh, and thanks for bringing the sugar free candy."

So, I have to live with this temporary confinement. Become a content homebody. I have to convince myself that the old Carly will arise. Maybe I'll come back even crazier. Not as crazy as Charlie Sheen, but definitely nuttier than my previous persona. I will continue to take my Cimzia shots; instead of wanting to throw them out the window, or use them for a game of darts. I will also continue to embrace all the support surrounding me.

*I am lucky to have my fiance by my side. We're like two hobbits in the winter, and somehow it works. This man will fill my sitz bath AND keep my company. I have so much love for that Hungarian hunk of joy. He is the only one who deals with my multiple personalities on a daily basis. They are not always pretty. He never knows who's going go walk through the door!


Side note:
This thing has helped me tremendously with my fissures.

Sunday, February 27, 2011

The Prednisone Rollercoaster

Most of us living with IBD have been put on steroids. I have this love/hate relationship with the drug. When I woke after my colonoscopy I instantly had a perscription for Prednisone in my hand. I had no previous knowledge of what the drug is like, nor did I realize that it was one of the most difficult ones to stop taking. I suppose when the doctor sees severe inflammation they jump right to Prednisone for a quick solution. I would have liked to discuss my options, but when you know so little about IBD, you're vulnerable.
At first I was at 40mg a day. The drug made me feel lethargic and emotional. However, after a few weeks my stomach aches and cramping reduced greatly. At the beginning I had this euphoric feeling that I was getting better. After two months I was back to the gym and able to make it through an entire work day. The only side effect I noticed was acute exhaustion.
After a month and a half I began to notice the long term affects of the drug - still mild in my mind. My face broke out in a dermatitis-like rash. My cheeks became puffy and more rounded than normal - I call this squirrel cheeks. The real name is moon face (the most difficult for me to accept). This is more of a vanity issue for me. I'm a girl! My "peach fuzz" all over my body grew darker and thicker. I noticed a mild, fatty hump under my neck (called a buffalo hump). I tried to laugh about my appearance. I would joke with people saying I was storing my lunch in my cheeks. My fiance bought me a buffalo stuffed animal to lighten my mood. I try my best to keep a sense of humor. Somehow I didn't experience weight gain - the only positive. Every other symptom listed for Prednisone, I eventually got after two months! It wasn't until I began tapering off the drug that I experienced the true fire and brimstone.
Tapering off Prednisone feels impossible. At first I thought it would be a piece of cake. I was hoping I could taper by 5mg, with trivial problems. Clearly I didn't understand how effortful this attempt would be.
I developed daily migraines, which led to seeing a neurologist. Which led to more medication, more money spent. I was constantly put back on a higher dose to relieve the withdrawal symptoms. Every few weeks it felt like I was back to square one. The lower the dose, the worse my symptoms became. Today I am still at 5mg, because tapering off has been so difficult. At this point, I'm ready to deal with the side effects and get off the atrocious steroid. To me, Prednisone is just masking my problems. Without being at 10mg or higher, my stomach pain has been severe. Right now I'm questioning if I'm experiencing adrenal insufficiency (I will know this week). I've looked at a list of withdrawal symptoms and can relate to every one. I am a Google addict. Just one more thing for me to worry about and feel like a hypochondriac.
I still have a list of questions I'm ready to present to my GI doctor this week. Especially because I started an anti-TNF treatment called Cimzia in November. How can I possibly know if it's helping while I'm still on Prednisone? If my current pain is all related to Prednisone, then I refuse to increase my dose. I know I would feel better if I was at 10-15mg, but eventually I would have to begin tapering and go through the agony....again!
Since this disease is still new to me, I'm unsure what my stomach pain means. I'm comfortable trusting my judgment, but unsure what constitutes a flare. If Crohn's means having flare-like symptoms for a month at a time, then I'll live with it. I have no other choice. However, if it's all caused by the Prednisone, I will continue to taper and never look back. I am determined to be off Prednisone. I know my life will have some normalcy once I'm off the steroid. Hope is what will motivate me to get off this frustrating drug.


These are a few pictures that display the "moon face." I have seen others have it more severe, but to me it's enough to cause bother.
Before Prednisone:









After taking Prednisone (also at a lower body weight):

The Core

The center of my body is the core to my existence...
It radiates through to the tips of my fingers...
When it's twinged, it creates my body to spiral into mystification...
I'm at a loss for explanation...
I'm at a loss for alleviation...

The center of my body consumes my daily timetable...
It causes a hesitance to my joy...
It causes arrest to my character...

I'm in control of how it manipulates me daily...
I fight its actions...
I govern my reactions...

The center of my body has a diagnosis of forever...
When it's cordial I welcome its presence...
When it's harmonious I walk on water...

My bond with the center of my body is everlasting...
I can welcome its companionship...
I can be calm toward its boundless grip...

My core,
My center,
My life foe,
My flame.

Sunday, February 13, 2011

F is for forever

The moment you are diagnosed with Crohn's, your life changes. All of a sudden you have to come to a realization that this disease will be forever. You've lived with it probably for years before your diagnosis. Yet, the official declaration does not make it easier.

I distinctly remember waking up after my colonoscopy and seeing the doctors pensive expression. He didn't want to perform the colonoscopy in the first place. His exact words to me were, "a little diarrhea is no reason for a colonoscopy." He proceeded to tell me he was sorry that I have Crohn's, especially when he saw the tears stream down my face. He said that most likely I had been living with the disease for three years, easily. Of course I was immediately upset. I had been going to gastro doctors for years trying to figure out what caused my stomach pain. Why was it that it took a nurse in the ER to recommend a colonoscopy? She was also the one who felt I had some kind of auto immune deficiency. I was wasting a significant amount of money going back and forth to the ER. A cat scan here, an endoscopy there - nothing. Even after the ER nurse requested an emergency colonoscopy, I had to argue with the doctors. The next day all the nurses in the gastro office were demanding to the doctors to perform the colonoscopy. A nurse named Judy said, "Look at her, she has a ton of canker sores in her mouth. She definitely has something going on in there." Judy went to each doctor personally trying to squeeze me in for the procedure. She was determined to find a solution to my daily obstacles. She handed me a free container of Movi-Prep. Off I went to my brothers to spend the night...on the toilet! My mom told me to make a bed near the bathroom. Instead I decided the living room was close enough. I lit some candles and dimmed the lights in the bathroom. If I was going to spend the entire night in there, I wanted to be somewhat comfortable. If only there was a toilet built into a recliner - now that would be amazing for Crohn's patients. The entire time I was drinking the Movi-Prep I was hoping it was worth it.



Days after my procedure I was still in shock. How do I live with this disease? What does this all mean for my future? Do I always have to be on medication? Then came every ones opinion's. The thing I had to remember is: people care. Everything they tell you is out of love. No one can truly understand what it's like to have this disease. People can read literature and experience someone close to them living with Crohn's. However, you're the only who has to live with it every day. Some days I feel great and have no symptoms at all. Other days I feel like I've swallowed shards of glass. People will see you feeling better for a moment. As soon as you're not well, they think, "Well, I thought you were doing better? You seemed ok the other day?" I'm exhausted, which makes me feel lazy. I barely have enough energy to cook (thank goodness for Antal), clean, shower and exercise. I have to tell myself that this is all NORMAL. I believe there are stages a person goes through after being diagnosed. I'm still lingering between the denial and anger stage.

It becomes difficult to stay positive. I wake up each morning unsure if it will be a good or bad day. I know that eventually I will get back to being the energetic, crazy Carly everyone knows. I've been known for joking about bowel movements. Well now I truly have a reason for this humor. If I don't laugh, I won't stay positive. This journey requires an ocean filled of humor. So here I go...let's laugh about poop, farts, stomach grumbles and belching! I'll end this note with a toot.

Tuesday, February 8, 2011

Here's My Gut Feeling

This blog is my way to express my personal experience with Crohn's as an individual. I'm still learning and do not claim to be a medical expert. I want this blog to reflect the comedic and serious side of living with Crohn's Disease. At times you have to laugh at the embarrassing moments. At others, you feel sorry for yourself - which is totally acceptable in my opinion!
My fiance and I will be writing a book about our intimate relationship with Crohn's Disease. I'm more than excited to begin writing. I will discuss our adventure gathering information and putting together every chapter. I hope this blog will allow others to not feel alone living with IBD.
More to come....