The Crohn's Ranger

Body Horror

2020-05-04T14:19:00.000-05:00

I have made it a habit over the past decade to do a photo shoot every time I have a major event happen with my Crohn's Disease. Why do I do this? Well, there is no simple answer that I can point to, but mostly I do it for two reasons. The first is to document what the disease has done to my body and how I bounce back from that (if I do), and secondly, to show people what it is really like to live with this disease. The commercials on TV and many Crohn's influencers only show a G rated version of the day to day struggles and also the major body trauma that we go through. The physical trauma is easier to process for those that do not have the disease. It is something visual and concrete. Which is very much unlike the psychological trauma that accompanies it. I also hope that those who see themselves in these photos know that they are not alone.

I have seen countless cries for help online, both tweets and facebook group posts, of people that are sad, angry, and lost. They feel like there is no hope, and they feel bad for feeling this way. I always try to tell them that these feelings are normal, but many times, I am the lone voice on that side of the fence. Many of the messages are: "praying for you!, You'll get through this!, Stay strong!" etc etc. Where does this need for constant positivity come from? Why do we constantly force ourselves to "fake it until we make it"? I say bullshit. Our feelings are valid, and we should never be unsure about expressing just how shitty we feel.

That is why I called this new photo series Body Horror. Because it is a horror. The tests and procedures I had to do during my 2 week + hospital stay, the surgery, the healing, the bruising, the blood, the shit, the scars, the staples, the tubes, the needles, the panic, and the fear all exploding out of a 90lb body. Be mad, be angry, be sad. It is ok. These feelings are scary and not to be taken lightly, but they are your feelings. You did not make them up. They may seem permanent, but I assure you they are not. They may return from time to time, and many times at the worst of times, but they are not permanent. No feeling is permanent. Kick, scream, cry, shout, and flail. Then get on with your life the best you can. Pushing it down or ignoring it only makes it worse for you and for those around you. Let it out and live without.

All Photos by Jake Rains

These photos were taken 2 days after leaving the hospital in January of 2020

Body By Crohn's

2016-03-29T15:35:00.000-05:00

It's been almost two years since I first did a photo shoot entitled "Body Image" with photos taken by Anthony Lanza of Lanza Photography and posted it here for the world to see. It got a lot of feedback. Some positive, some negative, but mostly positive. It has been a long and hard two years since then. Many things have changed, even more pieces of me are gone, and the journey is no where near at an end. I think this latest shoot, a collaboration with Jake Rains of Jake Rains Photography entitled "Body by Crohn's" shows me a little worse for wear. I believe that to be accurate. I've been fighting hard for over three years to survive what this disease does. I have a long way to go and I know there are many out there who have a fight even harder than mine. This disease takes not only a physical toll, but an emotional and psychological one as well. I've been to the darkest side of myself many times, but have always been able to return, however each journey there and back chips away at your very existence. I hope that these pictures have captured that and can speak to others that even the strongest among us carry battle scars and they are a heavy burden. Together we can share the load.

Girl, Interrupted

2015-12-07T14:33:00.001-06:00

Well, I'm back. At least for this post. I can never say that I'll keep a regular schedule with this blog. With this disease you never know what the future holds. Anyway, it has been a hell of a year. 2014 was the hardest year of my life with all the hospitalizations, setbacks, and losing my Dad. 2015 has been a little better, but that is a pretty easy feat to accomplish by comparison. I finally decided to bite the bullet and do the surgery they have suggested for the past 2 1/2 years. They wanted to take my entire colon and put in a permanent ostomy, but I'm too stubborn for that shit. I let them take a few feet and put in a temporary ostomy. I would be lying if I said it's been a breeze and agree with so many who say it was the best thing that they ever did. I admit I struggle with it every day. I'm not looking to have a pity party, but when you are already close to the edge it doesn't take much to push you over into the abyss. I'm not completely hopeless and depressed so don't start calling 1-800 numbers, it's just been hard.

I find myself angry a lot, and for no specific reason. I try not to be, especially around my loved ones, but it still creeps out. And don't get me wrong, i'm a tough little bitch that doesn't back down easy and I also know how to stay positive even when things are anything but, however, no one can pull that off 24/7. No one. What i'm getting at is, be mad, be sad, be however you feel. It's ok. We don't always have to be that shining example of mind over matter. We are still human after all. I'm trying. I'm trying hard to get back but it is a long road and there are many dangers. I hope to see you all at journey's end.

In the meantime, I will do my best to still be an advocate and voice for those that do not have one. This past week, December 1-7 was Crohn's and Colitis Awareness week. I was able to get the local media out to my house to do a story. So far I have had a lot of positive feedback about it. I'll put the link below if you have not seen it yet. Until next time (whenever that is), keep fighting Rangers.

Click here for news story

Gone Girl

2014-11-07T23:56:00.001-06:00

I've put off writing this for about as long as I can. I have been avoiding you on purpose. I've been gone. I didn't want to tell you, and frankly, you people have been about the last thing on my mind the past few weeks. Do not take this news as heartless or cold. My mind has been fixed elsewhere and that elsewhere has flung me to the pits of human despair. My father died fourteen days ago. Of cancer. My father died of cancer and I'm pretty fucking un-ok with that.

This is the part where I'm supposed to go into detail about what he meant to me and all that he did for me, but those sentiments would fill a fucking epic novel and are too personal (if there is such a thing) for a sloppily and infrequently kept blog by a frustrated, chronic-disease riddled English major with a penchant for ten dollar words and melodramatics. I apologize for the literary vomit being spewed your way. This wasn't your fault. In fact, that's what's so frustrating. There is no one to blame. No one I can point a finger at and say, hey you motherfucker. How do you punch cancer in the balls? This frustration has been felt with my own health troubles and I can't help but think that there has to be a better way. An easy way. But I don't think there is. I don't need to be ok with this. No one has to be ok with our loved ones suffering and dying of these diseases. IT IS NOT OK.

Don't cope. Don't find closure. Fight back. Tell people it's not ok. Fight the cause, not the symptom.

Ranger, out.

The Glass Has Water In It

2014-08-25T21:42:00.000-05:00

Things have been going..........better. I've kicked my pain meds, got a little part-time job, and actually have some energy. It's been a hard transition though. When sick is your normal, normality is abnormal. My body is coping, but the mind takes longer to catch up.
A Crohn's patient should always stay positive and think positive, but sometimes that's when the rug gets pulled out from underneath you. Yes, I'm feeling better and on the road to health, however I'm not out of the woods yet. It's been only six weeks since my last hospitalization and that isn't the longest stretch I've done between admissions. The fistulas are still open, the abscesses could come back, something worse could pop up. The list of what ifs goes on and on. So what do I do? Ignore what could happen and blast forward full speed ahead? Wallow in the fear of possible maladies and more hospitalizations? It comes down to outlook. What kind of person am I?: glass half full or glass half empty? Right now all I can say is that there is water in the glass. I'm not looking forward and I'm not looking back. Every day that I feel well and have energy I will take advantage.
Remember that. There are days when we don't know which way is up, how to feel, or how to plan for the future. Just remember that half-full or half-empty, there is water in the glass. Drink it up.

Body Image

2014-07-08T09:49:00.000-05:00

Many of you know that this year has been especially rough on me when it comes to my Crohn's Disease. I've been hospitalized four times already, had a drainage tube for three months, and I currently have at least two fistulas. I am in pain all of the time and am unable to work. All of this has taken a toll on my mind and my body. I have been hinting over the past few months about a Crohn's Disease inspired photo shoot. Well, I am finally posting it. I don't know why I waited so long. Fear? Maybe. We can't all pose in bikini's on the Mexican beach. I wanted to show the reality of Crohn's disease and what it does to your body. I didn't want to look pretty. These pictures were taken in January of this year, at the height of my most recent flare. I was down 20 lbs., had not bathed in 2 days, had no make-up on, and my hair was greasy and unbrushed. I'm sharing these photos to spread awareness about Crohn's Disease and how it affects those who suffer from it. I want to thank my husband for encouraging me to do this. I also want to thank photographer Anthony Lanza for understanding my goal, taking wonderful pictures, and stepping outside his comfort zone.

If you look closely you can see the bruises on my arms from I.V.'s and blood draws

The dark spots on my legs are a symptom of Crohn's. They last for weeks and make it painful to walk.

At the time I was on about a dozen different medications

I dropped in weight to under 100lbs

I had to use a cheat sheet to remember when and how many of each medication I needed to take.

Scars on my chest from implanted port-a-caths

My biggest supporter. I would not be able to get through this without my husband, Jeremy. This photo symbolizes the love and support he gives me in dealing with this disease.

This photo really shows the weight loss. You could see every vertebrae in my back.

In this photo I tried to convey through my eyes 15 years of sickness.

Please share these photos with anyone and everyone you know that is affected by or know's someone with Crohn's Disease. I have bounced back a little from the time that these pictures were taken, but the fight is still on going. I hope this helps some of you realize that you are not alone and you do not have to be alone. Share your struggles, share your fight. It helps you and it helps others. We are joined in our battle and one day we will win this war. Keep fighting rangers!!!!!

What Am I Getting Myself Into?

2014-02-12T16:05:00.000-06:00

Well, after two hospitalizations in the last two months, my doctor and I have decided to change my primary medication from Humira to Tysabri. Some of you may be familiar with this drug, but for those who are not, I shall enlighten you. This drug has a very scary possible side effect to it that caused it to be taken off of the market a few years ago. It is now back with stricter prescribing guidelines, but still has that nasty scary possible side-effect. What is this possible nasty scary side-effect you ask? Well, it comes in the form of a nasty scary incurable virus that can cause neurological damage and a host of other things. If you follow this link it will tell you all the nasty sordid details that I don't have the energy to type out. Tysabri Information

I have been tested for the antibodies of this J-Virus and I do not have them, so I have passed the first hurdle in avoiding this side-effect. Still, I would be lying if I said that I wasn't scared shitless by this possibility. We all have to take medications that have crazy side-effects that make us question whether or not the medication itself is actually worth it, but a majority of them come down to a nuisance rather than a life-threatening event. As I sit here typing this through a pain-med induced haze I can't help but question if it is worth it. But then I have to think of what the alternative is. Do I even have an alternative at this point? Perhaps I'm just psyching myself out. The first time I had Humira I was a nervous wreck, but that was because I was scared it wasn't going to work. Hopefully that is all that I'm going through now. Just some treatment based cold feet.

We are still waiting on insurance approval for this so all my fretting may be for naught. Only time will tell. I'll make sure to keep everyone informed as I strike out on this new medication adventure, and anyone out there who has experience with this med, please feel free to either put my mind at ease or send me screaming into the night. Besides, with all the shit us Chronies go through on a regular basis, they have to expect us to go a little mad sometimes. Best wishes, rangers. Keep on fighting, and pray for my sanity to hold at least through the first infusion. Peace.

The Society of Sickness

2013-07-10T15:46:00.002-05:00

There are numerous social media sites and groups aimed to help bring together people suffering from Crohn's Disease. I myself am a member of several of these on Facebook alone. These groups are meant to bring Crohnies from all over the world to one place where they can share stories, vent, commiserate, and express their joys as well as frustrations in their journey with Crohn's. As I was perusing Facebook today I saw a young girl post about her happiness and joy with her current Crohn's situation. She was feeling great and wanted to share it with others so that perhaps that joy would give them something to feel joyful about. Many understood her post as an attempt to be uplifting to those that may not feel so lifted during difficult times. Others, however, chastised her for posting what they saw as some kind of lecture from a young girl that hadn't had Crohn's for very long and evidently hadn't suffered enough to be worthy of their respect.This pisses me off.

I may make enemies by this post, but I really don't give a shit. When people turn a public forum designed to help people with a similar affliction into a pissing contest, it makes me want to punch my computer screen. What the hell, people? It is hard enough to try and get someone who does not have this disease to understand what we are going through, but to attack one of our own for what seemed to be veiled jealousy, is sickening. Yes, what works for one of us isn't going to work for all of us, but that doesn't mean we should collectively shit all over what HAS worked for one of us. Don't be dismissive and arrogant. Be happy for God's sake that one of us has found relief. Too many of us are stuck in what I like to call "The Society of Sickness." Don't worry, I shall explain.

Being stuck in The Society of Sickness means that you are consumed by your illness and everything and every action you do is influenced and affected by said illness in a negative way. It is a vicious cycle that we have all fallen into at least once on our journey with Crohn's and many of us struggle to break free of. We get sick we feel down, which makes us feel even sicker. Also, we feel sick for so long, that feeling sick is now our new normal. This behavior isolates us a human beings and severely robs us of having any kind of quality of life. These public forums are designed to help break this cycle. And, that is why it is so important for us to always be encouraging and helpful no matter if a post is positive or negative.

Yes, we all have to live with Crohn's for, as of the writing of this post, the rest of our lives. That doesn't mean that Crohn's is our whole life. I don't know about you, but I have given too much time to this disease already to be giving it any more by sitting around and constantly thinking about how sick I am, or what this disease has done to me, or what it will do to me in the future. SNAP OUT OF IT. I know many of you are more sick than I am right now and I'm not saying that you will be cured if you just think happy thoughts, I'm saying that Crohn's does not dictate the outcome of your overall quality of life. And by quality of life I mean your general outlook on life. Take pleasure in the simplest of things, anything that can bring a smile to your face. If you are stuck in a bed somewhere, the internet has a vast plethora of amusing entertainment waiting at your fingertips that I guarantee will make the poopiest of us crack a smile.

So break free of the Society of Sickness and cheer up godammit. There are so many beautiful and amazing things in this world, and never forget that you are one of them. And for fuck's sake, laugh every now and then. It is the best medicine.

Show me the money!

2012-09-04T16:58:00.002-05:00

I have been unemployed for four out of the past six months. My husband makes a decent living, but money is still very tight. It has only been in the last month that I have been able to find employment. I work two part-time jobs and am on the hunt for a third one. I wouldn't need a third if it weren't for the medical expenses that the insurance company does not cover. This brings me to my little story.

I have an outstanding medical bill at the local hospital for some blood tests and iron infusions. It wasn't my most expensive visit to date, but with my recent unemployment, it was impossible to pay it off in one chunk. No payment of any kind had been made on it since we received it over a month ago, like I said, money was tight. Well, last week I got a call from their billing department saying that I needed to pay something on it or they would have to turn it over to collections. So, thanks to my recent employment, I was able to at least make a small payment towards the overall balance on the account. I thanked the person on the phone, hung up and went about my day. (I was at work while all this is happening, fyi) Not ten minutes later, my cell phone rings. It is the hospital again. I figured that maybe they had a few more questions or maybe the debit card over the phone didn't go through. Nope. It was the hospital's fundraising department. They were very hopeful that I would be able to make a donation so that their hospital could keep providing quality healthcare to the community. She wanted $100. To some people this may not seem like a lot, but to someone with a chronic medical condition and little in the bank, it is a lot. I said no. She then proceeded to ask me for $75. I said no. $50. No. Then she asked if she could put me down for $35 two months from now. By this time I was trying to control the pressure of my eyeballs so that they would not pop out of my head and get eye juice all over my computer screen. I wanted to tell this woman off, but I was at work and everyone in the office can hear me speak on the telephone. I simply said no and hung up.

I could not believe that they had the balls to contact a patient that has recurring visits and is struggling to pay their very expensive medical bills. I'm sure the person on the phone had no idea about my account, but I was just pissed. I've dealt with insurance companies and monthly medical bills that number into the hundreds of thousands of dollars and here is an institution trying to squeeze out the last remaining drops from me. I just couldn't believe it. It made me feel embarrassed. I contacted the hospital via their Facebook page. The exchange went as follows:

Me: Just writing to tell you that I just got off the phone with one of your representatives and they were asking me to donate money. In most cases this would not upset me, but in this case it did. I am a frequent visitor to St. Luke's as I have medical issues that require a lot of attention. Therefore, I receive bills from you on a regular basis which can be difficult to pay at times. You might want to make sure not to call your patients that struggle to pay their very expensive medical bills to try and squeeze them for and additional handout.

Them: Please accept a heartfelt apology for the ill-placed call. You are absolutely right, and I appreciate you bringing this to our attention. I will pass your comments on to the appropriate hospital leaders to correct. Thank you for being a loyal St. Lukes patient.

My point to this story is this: Stand up for yourselves. If you do, you will get results. You are not just a patient or an ID bracelet. You are a person, and if you have struggled with Crohn's, you are my favorite person. Be strong and stay strong.

Love,

The Crohn's Ranger

It's Been Too Long

2012-06-26T15:03:00.004-05:00

Hello rangers. It's been quite a while since I've posted on this blog and oh so much has happened in my life. I've been doing "okay" Crohn's wise and life has been pretty good. I got married to my wonderful husband almost a year ago. It was a beautiful ceremony and the wedding and the honeymoon was not interrupted at all by the disease. When I returned from my honeymoon I was fired from my job. Those of you with Crohn's knows what stress does. I was unemployed for almost three months, but luckily my husband has excellent insurance. Three months worth of Humira only costs me $20 with his insurance, which is very good because a single Humira pen can cost over $1,000 and I get 2 of them every other week.

I worked again for a few months, but left that job to chase a dream. I went to Miami to pursue modeling and acting. I was there for a little over two months, but came back because my father's health wasn't that great. He's doing better now, but the doctor's can't tell us much. I'm now back home and trying to figure everything out. I have been cast in a film that I auditioned for in Miami, but like everything else in life, it's not a done deal yet.

The past month my Crohn's has flared and my blood counts have been less than spectacular. Luckily, they haven't had to hospitalize me, but I have had numerous infusions of both blood and iron. I have one more iron infusion to go in the series that they prescribed and then they will take a look at my blood again and go from there. I tell you rangers, it's not always easy to keep fighting, but I know that there are lots of you out there having a tougher time than me and you keep on fighting. That keeps me strong. I will do better to share my story. I'll share it with you and anyone else who cares to listen. Our stories are the most powerful thing that we have, so spread the word rangers. And, never give up.

Battle Fatigued

2010-09-16T12:05:00.000-05:00

               I'm tired. I'm tired most of the time. The biggest difficulty I face with Crohn's is that the fatigue keeps me from doing things that I want to do. My mind is going a million miles a second, but my body cannot keep up. This has gotten in the way of school, family functions, work, and pretty much every aspect of my daily life including simple household chores.

               I've talked to many people with Crohn's disease who have had people call them lazy. We are definitely not lazy. Our bodies work harder than most, and some people say that our bodies even work too hard and that is why we are sick. Well I'm here to set the record straight on those that would see us a lazy. I do anything and everything that my body allows me to do. Many times, it gives out on me and there is nothing I can do about it but lie down and try to recharge my battery. When I am unable to do things on a daily basis I feel useless and weak. I am a pretty independent person and it makes me feel bad that I have to rely on someone else that much. Luckily, I have wonderful and amazing people around me who understand, for the most part, what I am going through and that I do need help once and awhile.

               Even though I do get this awful fatigue on a regular basis, I still push myself as much as I can. My biggest pet peeve is when people tell me I can't do something because of my Crohn's. They think I'm too weak, too fragile, or not strong enough. All of their talk is just fuel to make me want to try even harder. Even if I do fail, at least I tried. Also, when I say that I can't do something: I really cannot do it. It is hard to admit when something is beyond my means, but I only tell people I can't do something when I absolutely positively am physically unable to do it. Sadly, not everyone understands this and sometimes they keep prodding at me to do it.

               So take heart my rangers. You are not lazy and don't let anybody ever tell you that you are. Remember to push yourself, but don't overextend and make yourself even more sick. I am pretty guilty of that myself. I guess it's that German stubbornness that I get from my Father's side. It comes in handy, though, every now and then when I feel like I should just give in to the disease and stop trying. I'm never quitting the fight, and I hope you can say the same for yourself. Fight on, rangers, fight on.

Test Anxiety: Colonoscopy

2010-09-13T10:41:00.000-05:00

               I usually have to have a colonoscopy every year. This doesn't make them any easier to cope with. I detest everything about them: the prep, the time commitment, the discomfort, the awkwardness, and the fact that it takes me a day or two to get back to normal because I always get ill after them. Usually, there is puking and a fever spike, but it has more to do with the anesthetic than the procedure itself. For some reason I wake up during the procedure under a regular sedative, so I get to have general anesthetic. Also, I don't have to completely finish the prep. What they give me is the gallon jug-o-nastiness which, no matter what you do, tastes like how I imagine Lance Armstrong's bike seat tastes after the sixth day of the Tour De France. I'm pretty small to begin with so if I don't eat too much the day before I can get by with only drinking about 1/3 of the prep. This gives me at least some comfort. My heart hurts for those of you that have to choke down that entire thing.

               I will say one thing about them though. I find farts hilarious, and it makes me giggle like a seven year old when, at the end, I have to expel all of the air that they pumped in. Luckily, my fiance thinks its funny too, so we have a good laugh about it on the drive home. I feel no shame in talking about this, it is not like people with Crohn's have any control over what their bodies decide to do, and we have to learn how to cope with all this stuff that we have to go through. We really don't have a choice. If we want to be as healthy as we can be and fight this disease then we have to do these tests on a regular basis.

               I find comfort in the fact that I can laugh about something that many find too embarrassing to even mention. And, I am glad I have someone to laugh with me. I hope all of you out there have someone you can laugh with. It is such a cliche, but: laughter is the best medicine. So, I hope this helps you laugh at yourselves. Don't take it so damn seriously all of the time. There is a time for serious and a time for silly, and when you're farting more in a 30 second time period than most people do in a month, it is time for silly.

A Hymn for Humira

2010-09-09T09:45:00.000-05:00

               At my lowest weight I was 84 lbs. My hair was falling out, my potassium was so low that my heart was in danger of stopping, and I was hardly able to take in more than 500 calories a day on the good days. I had been seeing a new doctor for about a year, and they were at their wits end trying to find a medication that would keep me alive. Luckily, the new doc doesn't give up without one hell of a fight.

               They decided to put me on Humira, which was originally intended for patients with Rheumatoid arthritis. It was an injection that I would have to get every week. Many people give it to themselves, but the doc wanted to closely monitor the situation, so my mother, sometimes my father, and I would make the hour long drive every week. The first trip down I was a nervous wreck.

               I can remember most of the truly scary moments in my life, but hands down, the scariest in my life has to be that day. I was sitting in the little room of the doctor's office, that sterile paper crunching underneath my minuscule buttocks, and I was terrified. Terrified that it wouldn't work. Terrified that without it I would just waste away and disappear. The nurse came in and started preparing the injection. I wish she would have prepared me for how much it was going to hurt. Having Crohn's disease, one develops a pretty high pain tolerance, but I was sorely equipped to handle that burn.

               The injection went pretty smoothly, despite my white knuckle ride on the examination table. I didn't feel any different, but after the appointment my father and I went to eat at a chain restaurant that specializes in bbq and being famous. I was actually able to eat! It was satisfying and I was ecstatic. The drive back home was long, but it was definitely hopeful. Hopeful that the fear would go away, and that I could start doing something that I hadn't in a long while: start living.

The Curious Case of Ecuador

2010-09-07T12:53:00.000-05:00

               Ever since I was a little girl I had dreams of going to the Amazon and the Galapagos Islands. My father was a science teacher, so I learned about Darwin and his voyage to the Galapagos at a very young age. In May of 2009 I got my chance to make both of these dreams come to fruition. The college I was attending was offering a two-week trip to the Amazon and the Galapagos Islands. I made sure I was one of the first in putting down a deposit to secure my seat on the trip and started the ball rolling on getting my passport and required immunizations.

               Due to my Crohn's disease, there were a couple of shots that I could not get because they were live virus vaccines. If I were to get these shots I would ultimately develop the affliction that the shots were meant to inhibit. However, I was able to work with my doctor and the travel company to make sure I had the shots I could get and the proper paperwork, in both English and Spanish, to make sure that I did not end up in quarantine. Even though I was being extremely proactive and making sure every possible precaution was taken, there were still people around me saying that it wasn't a good idea and I shouldn't do it because I might get sick down there. They thought my Crohn's would hold me back to checking off two giant items on the bucket list. Not gonna happen.

   The trip was filled with more amazing moments than I have space on this blog. It was filled with incredible feelings and overwhelming experiences such as swimming in the ocean for the first time, snorkeling with a penguin, and eating lemon ants. One thing that I didn't realize while I was down there, but have come to see more and more as I look back, is that I had no Crohn's symptoms during the entire trip. Nothing. I've wracked my brain to try and come up with a logical and legitimate reason for this. What I deduced was that it was because of the food. Nothing down there has preservatives and they do not use hormones in their livestock. Most everything is grass fed. I was even able to enjoy a medium rare steak when I was down there! Everything was fresh and organic, not processed and packaged. They also rarely use corn syrup, but instead use natural cane sugar as a sweetener. It seems that a radically different diet gave me a radically different gut.

   I've read many studies talking about how Crohn's disease is virtually non-existent in third world countries. Why is this? Is it the food or something more. One popular opinion is that these countries don't sterilize and clean things as much as we do. This over-sterilization cause natural bacteria to be destroyed before it can serve its purpose. They also do not eat the same kinds of food that we do. Nothing is processed, pasteurized, or injected with hormones. Of course there is no definitive answer on what causes Crohn's and why it is only prevalent in certain types of societies, but my experience in Ecuador has left me puzzled and wanting to know more. Hopefully more research along these lines will be done and the answer can be found. Until then, I am going to save for a return trip to South America.

Here is some more info on Crohn's and third world countries and also on parasite treatments for Crohn's:
http://www.ncbi.nlm.nih.gov/pubmed/10973934
http://www.ehow.com/facts_5660901_crohn_s-disease-parasite-treatment.html

Disabled: Volume 1

2010-09-03T15:30:00.000-05:00

               For over eight years of my life I was legally disabled due to my Crohn's disease. Very few people know this about me. It was one of the most difficult, humbling, and shameful decisions I have ever made in my entire life. My parents were struggling to keep me on Cobra insurance and I was so ill that I couldn't work in any arena and regardless: no one would hire someone who was in and out of the hospital all the time and would have to call in sick on a regular basis. Anyways, I swallowed my stubborn pride and filed with the Social Security Administration for SSI benefits. It was a long and arduous process that included miles of paperwork and various doctor evaluations. I was approved almost 6 months later and started receiving checks once a month and healthcare through the Medicaid program. Over the course of the eight years that I received these checks, they averaged around $625. This amount was plenty when I lived with my parents, but turned into a stress test every month when I moved out on my own. Needless to say I got very good at stretching that almighty dollar.

               No matter what my Crohn's was doing, the one thing that always brought me down was having this stigma heaved upon me because I was on government assistance. I would hear people on the news, friends in public, acquaintances on Facebook, and others talk about how people on these kinds of programs are just lazy. That they are just looking for a handout and a free ride. I just wanted to be able to get treatment and keep my family from going broke. I never lied about my condition to receive benefits, and I never took for granted anything that I was given. I know that there are people out there who do abuse the system, but those of us who need it shouldn't be punished and persecuted for the actions of a reckless and irresponsible few. Every time I had to go into the Social Security office or the Department of Human Services I would little by little be made to feel like a completely worthless human being. Once and awhile I would interact with a case worker that had a genuine sense of caring and empathy and I owe them a great thanks, but mostly I was treated like a second-class citizen and piece of shit. Someone once said to me that my disability check was "free money." It wasn't free. My soul and my heart paid a high price.

   There is much more to tell about my experience of being on disability, but I cannot go into them now. That is why this post is titled "volume 1." There is much more to come, including a few surprises and a cameo by a U.S. Senator. Until then, all I ask is that you hear me when I say that I am not lazy, I do not want a free ride, and I am a strong and capable human being that deserves some dignity and respect. But, even the strongest of us need help sometimes. If you are on disability, or know someone who is, you have my respect, and I hope that you are able to one day get on your feet and be healthy. Also, never stop fighting. Healthcare is a human right. None of us are expendable. Good day rangers.

For more information about the Social Security Administration and SSI please visit the following pages:

http://www.ssa.gov/disability/
http://www.social-security-disability-claims.org/
http://www.disability-advocate.com/

Reefer Madness: Up with Hope, Up with Dope

2010-09-02T13:33:00.001-05:00

               First of all, I am not condoning any illicit or illegal activity on this page. I do not encourage you to break the law. This is merely an anecdotal sharing of my past experiences. That being said, let the blog post continue. After my experience with Remicade several years ago, I was put back on a number of different pills, including Prednisone, Imuran, Pentasa, etc. I was steadily losing weight and it seemed like my symptoms were getting worse by the day. By this time I had a port-a-cath implanted in my chest and was receiving I.V. nutrition five nights a week. Due to repeated blood infections, which I will discuss at a later date, my port had to be removed permanently. This left me to rely on my own gut to give me the nourishment that I needed to survive. The problem was that the inflammation was so bad that my body wasn't absorbing enough nutrients out of the little food that I was taking in, due to a severe lack of appetite. At my lowest weight I rang in at a measly 84lbs, which is bad for anyone let alone someone 5'5". It got so bad that I was afraid to go to sleep for fear that I would not wake up. I was constantly on websites looking for alternative treatments, or at least something to get me through until something else could be found that would work.

                 In a forum for Crohn's sufferers I saw a post about using marijuana to stimulate your appetite. I decided that this was an avenue I needed to try because nothing else was working and I was dying. Well, I had dabbled a bit with pot in my high school days, so I knew enough about it to know where to get it and what to do with it once I got it. I started out only smoking it a few times a week. While it stimulated my appetite, it wasn't doing anything of enough significance. So, I upped it to everyday and then to a few times a day. It worked wonders. Not only was I able to eat on a regular basis, but it alleviated some of the pain that I was having. I got my weight up to about 95lbs, which is no miracle, but it was enough to keep me going until other medications kicked in.

                 There are many funny aspects to this part of my journey with Crohn's disease: tales of munchies induced flavor combinations and buying a 20 sack with my disability money, but it was a very serious decision I made to use an illegal substance to keep myself alive. And I truly believe that it did save my life. I have no regrets. We should not have to break the law to help ourselves. Laws need to be changed and more research needs to be done. Overall, what is needed for a person to be well should be available to them. Smoke 'em if ya got 'em? Smoke 'em if ya need 'em.

Prednisone: to dance with the devil

2010-09-01T08:15:00.001-05:00

The one good thing that I can say about prednisone is that it works. Every time that I have been on it my symptoms have subsided, but at what cost? The major dilemma I personally have with this medication is that it's side-effects are usually an even trade for my Crohn's symptoms. In exchange for the pain, discomfort, fatigue, frequent bathroom breaks, etc., I got sleepless nights, a scatter-brain, moon-face, an inability to focus, night sweats, and an overall feeling that I was teetering on the edge of sanity. The taste was uniquely awful as well: I took to using pudding to help choke them down.

I haven't had to take prednisone for more than around a year at a time, most recently tapering off of it this past Spring, but it has left a mark on my subconscious that makes me shudder whenever it is brought up by the doctor. I would not recommend refusing prednisone if it is recommended by your doctor, I am merely relating my experiences with it to you. The same can be said for any other medication or treatment that I discuss on here. Still, I can spot "prednisone-face" or "moon-face" at thirty paces. This drug is also prescribed for a myriad of other conditions. So for those of you out there currently prescribed this much loved and much despised medication: I feel your pain and can sympathize with the puffiness.

Remicade

2010-08-30T16:20:00.001-05:00

Remicade was the first heavy-hitting drug I was put on to treat my Crohn's disease. I was on a pretty high dose of Prednisone along with Imuran. My first treatment made me feel like a brand new person. My symptoms completely went away, my energy came back, and I started to put on a few pounds. After several weeks, however, they started to come back so I had to schedule my next infusion soon. I rode the elevator with my mother to the fourth floor of the hospital to the infusion center. They got me comfortable and got the I.V. started with much more ease than normal. The nurse brought in the bag and hooked it up to my line and walked back out of the room. I barely had more than a few cc's of Remicade when my chest became very tight and my vision started to tunnel. In less than a minute I was no longer able to breathe. They had given me Benadryl before they started the infusion, but I was still having a severe allergic reaction to the Remicade. My blood pressure bottomed out and the nurse frantically pushed buttons on the pumps as another put an oxygen mask over my face. It was one of the scariest moments of my life. One second I was fine and the next I could not take in a breath. They were able to stabilize me and sent me home a few hours later. The doctor I was seeing at that time wanted me to try the infusion one more time a few weeks later.

That next infusion triggered an even quicker allergic response and Remicade was forever checked off the list of possible treatments for my Crohn's disease. I know many people that thrive on Remicade and it has done wonders for their symptoms, keeping them in remission for years on end. My main point in this post is that there are so many different treatments and medications for Crohn's disease and new ones are coming out all of the time. What puts one of us into remission could cause a near fatal reaction in another. We all react differently and our Crohn's varies in intensity from month to month and from person to person. When asking others about how it will be to receive a certain medication make sure you ask a wide variety and get many different opinions before you decide. Ultimately, put that trust in yourself and go with your gut.

Support System

2010-08-29T19:51:00.001-05:00

I am very lucky to have a support system of family and friends to be there and help me when I get sick. This wasn't always the case. My friendships from high school were the first casualty of my Crohn's disease. Some people, especially teenagers, find it hard to stick around with someone who is very sick and doesn't completely understand what they themselves are going through. My biggest support has been my parents. They were there when I had no friends and no one else to turn to, and this was the case for a few years. Today I have amazing friends that know about my disease and are there when it hits hard. The strongest link in my support chain is my fiance. He is there every day and sees what no one else does and is there to hear what I wouldn't be able to tell anyone else.

If you are fortunate enough to have a great support system, make sure they know how much you appreciate all of the late nights, insurance battles, doctor's appointments, tests, hospital stays, ER visits, prescription runs, picking up the slack during a bad flare, carrying us when we can walk no farther, helping us out of the tub, and putting up with us when we are on Prednisone. This are just a sampling of what they do for us. For those out there who do not have a support system, we are out there. Reach out and we will find you. We are on the net, on Facebook and Twitter. Some of us even write a blog! We are there for you to share in your lows and congratulate and praise your highs. None of us are alone, or at least we don't have to be. Another good idea is to ask your doctor about local support groups. And, I call on all of the rangers out there to be there for one another. Even though this disease affects each and every one of us differently, we all will live with this disease until they find a cure. Keep fightin' my fellow rangers. Fight for those who do not have the strength to fight for themselves. We will overcome.

Everybody Poops: Down with Diarrhea!

2010-08-27T15:15:00.002-05:00

Frequent trips to the bathroom is not the only symptom of Crohn's disease, but it is safe to say that it is the most embarrassing and troublesome. All of us Crohnies have horror stories about our bathroom experiences, but don't always have someone to share them with. These not-so-glamorous side effects can make it hard to not feel completely alone and misunderstood. It affects every aspect of our lives from work to dating to just going out to have a good time. How do you broach the subject when you meet someone new? I've had the disease long enough that I'm not too shy about telling people what's what. When I first started dating my fiance I would spend quite a lot of time at his house. Hiding my "problem" came to be more and more difficult as I was spending longer and longer periods of time with him. Finally one night, when I knew there was no avoiding spending a considerable amount of time in his bathroom, I just flat out told him: "Look, I'm going to blow up your bathroom occasionally. There is nothing I can do about it." Luckily, I picked a good one and he took it pretty well. We still laugh about it to this day.

What I've learned over the years is that if you are not embarrassed by what your body does, no one else is going to be embarrassed for you. Just be honest and upfront with people. You condemn yourself to a lonely existence if you don't. If you can't talk to someone, hell talk to me. I will help you laugh at yourself. Don't take it so seriously and I guarantee the people around you will come to understand what you are going through even more. In the meantime, familiarize yourself with websites that show where public bathrooms are located, such as www.sitorsquat.com and also print yourself off an "I can't wait card" which are available on the net from many Crohn's and Crohn's related organizations. Another little hint: I sometimes carry pocket spray air-freshener in my purse. So, my fellow rangers, shout it from the rooftops: "Everybody poops! But probably not as much as I do!" Trust me, you will feel better and freer. Don't let this disease confine you any more than it already has. Honesty, that's my policy.

Humira Injections

2010-08-26T11:42:00.001-05:00

OUCH!!!!! My homehealth nurse was just here and she gave me my Humira injections. I get two at a time every other week. She always tells me how much her and the other women hate giving me the shots because they hurt me so much and so they feel bad. We've tried everything to get them to not hurt as much, but there seems to be no rhyme or reason to why sometimes they will just pinch a little and other times I almost come out of the chair swinging. The pain is worth it though. Humira saved my life and has kept me alive when no other medications were working. I just hope it stays that way.
http://www.youtube.com/watch?v=MZ-9vDeJWu0

Diagnosed

2010-08-25T14:59:00.001-05:00

I'd had stomach problems as long as I can remember, however the catalyst for my diagnosis had nothing to do with my stomach or intestinal fortitude. It began with pain in my chest. I was still in high school at the time. The pain started during the fall and continued for several months. I thought it was just heartburn, but it turned out to be esophageal ulcers. Next, I started to drop weight. A lot of weight. I was never fat, but I was thick and bordering the realm of chunky. I went from around 140 lbs down to 120 lbs in the span of a few months. That is where the stomach issues came in. My appetite had always been extremely good: I could polish off frozen pizzas without batting an eye. My desire to eat had now dwindled to around 1000 calories a day, and I was in the bathroom every twenty minutes. I was only seeing my primary physician up to this point with only sporadic visits to several local specialists. One specialist decided to do a full scope: upper GI and a colonoscopy. They found severe inflammation around the terminal ileum, which is where the small intestine and large intestine come together. This is also where they discovered the esophageal ulcers which had now spread to my mouth and gums, making it even more difficult to eat.

So there I was, two weeks away from graduating high school, three weeks away from my 18th birthday, and I was told I had an incurable disease that was going to affect every aspect of my entire life. Kind of put a pall on things. I can't even remember the name of the pills they put me on to start with, all I can remember is that I had to take 20 or so of them every day, along with several doses of Prednisone, a medicine I have done battle with many times since. Appointments were made with more specialists and a trip up to Mayo Clinic in Rochester, MN was the next step. I don't remember much of that trip, except being wheeled around through various tunnels and corridors. A few weeks before I went up there giant red spots began to develop on my legs. They were hard, warm, and the pressure in them made them feel like they would burst if I stood up. Walking became extremely difficult, and the reliance on my parents became almost complete dependence. That is the biggest thing I have to stress about this disease. No one can go through it alone. Talk to people, answer their questions. Even if it's the same bullshit you've heard 20 million times, answer it. Hell, start a blog! Trust me, it helps. Much more to come, I promise. There is Remicaid, infusions, port-a-caths, and embarrassments galore. Keep on fighting my rangers. I know I am.