Remicade

               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

               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!

               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

               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

               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.