What I Deal With...

A few posts back, I had stated that someday I would write about what it's like to live in my body with Crohn's Disease (and the other disorders I deal with).  I want to warn anyone reading now that if you have a weak stomach or don't want to read about bathroom issues, stop reading now.  YOU HAVE BEEN WARNED.  I thought about censoring this, but my disease doesn't censor itself, so why should I censor what I deal with?  (Lucky you, huh?!)  :)

Anyway...

I was diagnosed with Crohn's in the fall of 2001 while in college at SIUC.  My sister had recently been diagnosed with ulcerative colitis.  She had gone through years (YEARS) of pain and suffering and had to drop out of school because she became so ill.

My whole life I had dealt with constipation issues.  I can remember as a kid having to receive suppositories from my parents, my mom making me eat a prune every day, and being miserable when it came time to go to the bathroom.  I can remember times of sitting in the bathroom, crying because it hurt so bad, gripping my mom's hands, bawling my eyes out.  I suppose that was when my Crohn's really started to manifest.  IBDs don't always mean diarrhea...unfortunately, it can also mean constipation.

Leading up to the fall of 2001, I started having stomach pains and my stool changed.  It was becoming more frequent, looser, and my sense of urgency changed drastically.  The day I saw blood in my stool, I became scared and called my sister and my mom.  They both encouraged me to talk to the doctor about it.  Naturally, he referred me to a gastroenterologist.  The GI doctor performed a rectal exam and asked 4,000,000 questions before he decided I needed to undergo a colonoscopy.  I was terrified.  What does this mean?!  The prescription for the Go-Lytely (what comedian named that drug?) scared me.  Here was this huge gallon jug of nastiness that I was expected to drink in order to prep my intestines for this test.  I will never forget that texture and that taste.  (I equate it to drinking snot that tasted like salty cherries.)  THE MOST DISGUSTING THING EVER.  It was so hard to choke down.  But, it worked.  Fast.  I can remember having to run to the bathroom every 10 minutes while I was drinking that stuff.  The next morning, my mom took me to the hospital where my colonoscopy and biopsies confirmed I had Crohn's Disease in my terminal ileum.

I was placed on a drug called Pentasa, which is a mesalamine.  Pentasa (and other related drugs) can help heal the wounds left behind by Crohn's, but it is not a cure.  (There is no cure.)  I was on this drug until I graduated college and had no health insurance.  Pentasa (and Crohn's, in general) is expensive.  Stupidly, I thought that because I had no more symptoms, I didn't need any medication.  Well, duh...it's because I was on medication.  For the next 8 years, I had no symptoms.  Of course, I had the constipation issues again and the occasional stomach pain, but I truly thought I had been misdiagnosed.

Fast forward to summer 2009 and my tummy is KILLING ME.  I would be sitting at my desk in work, doubled over in pain, crying because it hurt so bad.  I was losing weight because of the constant diarrhea and vomiting and not able to eat (or even drink) anything; including water.  The day I left work to go to the ER was the day that changed my life as I knew it.  (I lost my job due to being sick "too much", I proceeded to rack up HUGE hospital bills, etc)  While in the hospital, I had an endoscopy (since my pain was higher) and was told my Crohn's had spread to my stomach and into my esophagus, plus I definitely had ulcers.  I also underwent a Hida-scan on my gallbladder, but the surgeon told me I could wait awhile on having that surgery.  (He still doesn't think I need it removed.)  I didn't have a colonoscopy because the treatment for Crohn's in my stomach is the same as it is for Crohn's elsewhere.  I was put on Prednisone (a steroid) and Prilosec (for the ulcer).  Two weeks later, I was back in the hospital with a blood clot, but that's another story.

Over the next few months, I visited my GI doctor regularly and really thought I had things under control.  I had found a full-time job pretty quickly after leaving the hospital and started a few weeks later.  By February 2010, though, I was back where I had started.  Dehydrated, malnourished, severe pain, etc.  I had sprained my ankle a few weeks prior to this in January and was unable to let that heal properly because I couldn't use crutches the right way.  I had no strength to hold myself up on them so I wrapped the hell out of it and started hobbling around on it.  (Yeah, that's smart.)  Back into the hospital I went!  This time, it was mostly just pain management and getting me back on steroids, etc.  (Oh, and I had another blood clot two weeks after that release!  Notice a pattern?)  Once again, seeing the doctor on a regular basis, trying new drugs, trying old drugs (Pentasa again - this time, the side effects were worse than the symptoms) - so I stayed on Prednisone for awhile.  UGH...have you ever been on Prednisone?  It makes you want to eat ALL THE TIME and eat everything.  You crave everything.  You gain weight, of course.  It makes you hot, shaky, an insomniac, and after being on it for awhile, you really start to develop that "'roid rage".  I also started breaking out like a prepubscent teen and developed "moon face".  While the drug definitely makes the Crohn's feel better, the rest of my body was being ravaged by it.  Crohn's is an autoimmune disorder, which means my immune system attacks my digestive system like it's a foreign object in my body.  Steroids calm the inflammation and suppress the immune system, but they shouldn't be used long-term since they can negatively affect the adrenal system.

I thought I had kicked all of this again and thought (foolishly), I could manage this through diet and Prilosec.  I am such an idiot!!!  NO I CAN'T!!!!

Starting in the fall of 2010, I began to develop the classic signs of a flare once again.  Diarrhea, nausea, vomiting, severe stomach pain, loss of appetite, tiredness, achy body, fevers, dry scaly patches all over my body, etc...the weight loss was very noticeable this time.  People started telling me I looked "great", even though I was slowly dying.  I guess in our society, as long as you are thin, you are ok.  What was happening on the inside, to some people seemed to be diminished because I was getting thinner.  "Part of you has to be happy that you are losing weight without trying!"  "I wish I could have Crohn's so I could lose weight!"  "You look amazing!"  Thanks, people.  Thank you for telling me that even though I am so sick I can barely function, but I am losing weight that you think I am doing well.  Thin DOES NOT equal healthy (in some people).

If you have read my blog previously, you know what happened...I went back to the hospital.  I had very low blood pressure, a high heart-rate, etc...I was very, very sick.  My husband made it known to the nurses and doctors that he wanted ALL of my specialists consulted.  I had been seeing a cardiologist for a few weeks prior to this hospital stay because of my blood pressure and heart rate.  He had diagnosed me with cardiomyopathy (weak heart) and put me on heart medication.  Turns out, the Crohn's had taken such a toll on my heart, that it was causing it to become inflamed and weak.  I was starting to get fluid around my heart (congestive heart failure) and it was slowly shutting itself down.  Because I was unable to really eat anything (and everything I did eat was quickly expelled from my body), I was severely malnourished.  The doctor likened my condition to that of an anorexic/bulimic.  This time, my GI doctor wasn't messing around.  He was pretty pissed at me for not taking care of myself properly and letting it get so out of control.  They did another endoscopy and a colonoscopy and confirmed that my Crohn's was now mouth to anus and a severe case, at that.  They started me on Prednisone (AGAIN) and Imuran (an immunosuppresant).  The heart condition leveled itself out - it was because of the Crohn's and not a heart condition - great news!!!

That brings me to today.  The Imuran causes severe headaches and back pain, so I have stopped it without my doctor's permission.  But, I am starting Cimzia soon, so I figure it's ok.  The Crohn's is back in full force, but I know it's going to be short lived.  I just can't wait to start these injections and get this shit under control!!!

So...the point of this post was to tell you about what I go through.  Crohn's sucks, obviously.  It gets to the point sometimes that you need serious medical help.  On a day to day basis, though, during a flare (that's what it's caused when your disease starts acting up), it is hard to deal with.  If you have made it this far into the post, thank you.  Now, I'm going to get detailed and the gross details are going to come out.  I understand if you never want to talk to me again or read this blog again.  :)

Crohn's is an inflammatory BOWEL disease.  I have sores throughout my digestive system.  You know how a canker sore feels?  Yes?  Ok, I get those in my mouth, but they are Crohn's.  They last anywhere from a week to a few weeks at a time and they spread like wildfire.  Nothing takes care of them (salt water gargle, etc), but I have a topical ointment I can put on them to numb the areas.  I get those in my throat, as well.  I have severe heartburn and acid reflux.  The acid causes me to have this dry, nagging cough.  I wake up coughing most mornings and sometimes I vomit because of all the acid.  You know how it feels when you eat something that really makes your stomach hurt and you have to go to the bathroom right away?  That's how I feel all the time.  Even when my stomach isn't killing me, there is a dull ache there.  Oh, and it makes lots of noise.  I liken the sound and the feel of it to a pot of boiling water in my tummy. Then, comes the lower abdomen cramping.  It's like someone is stabbing in the guts over and over again.  By this point, I usually have to go to the bathroom.  Hopefully, I'm close to one!  I've had to stop in a dead standstill in stores, my bathroom, my bedroom, at work, etc because if I move, I will poop my pants.  The sense of urgency is ridiculous.  Once I have to go, I have to go right away.  There is no holding it.  I get very cold when I have to use the bathroom, so that coupled with a blood thinner and anemia...well, I'm generally freezing all the time.  If I make it to the bathroom (yes, I have pooped my pants many times), it's an all out war.  Modesty in a public restroom left me a long time ago.  I am that girl that goes in there and makes all sorts of noise, because that's my disease.  My stool is watery, bloody, and painful.  On top of all of this, I have hemmorhoids and I'm usually fighting "diaper rash" because I wipe so often.  Not to mention, the inflammation and the straining (because even though I have this type of stool, sometimes I still have to strain because of my stricture in my small intestine) have caused me to have vaginal inflammation, too.  So, I consistently feel like my ass is going to fall off my body.  These are the digestive effects Crohn's has on me.  It makes me sick to eat most of the time, even to drink water is a challenge.  Smells make me nauseated, so eating lunch in our lunchroom at work has become impossible.  Red meat and pork aggravate me more, as do yeasty breads, excessive amounts of sugar, caffeine, and "roughage" (romaine lettuce, broccoli, etc).  Because of my clotting disorder and my medicine for that, the diet restrictions between these two disorders leaves me mashed potatoes, cereal, foods that are low residue and don't offer a whole lot of nutritional value.  Thank goodness dairy doesn't bother me! Outside my body, Crohn's has also affected me.  I have a large "rash" on my upper back.  It's dry, scaly, red, and SOOOO itchy, and looks like ringworm.  This is Crohn's.  It's spread to my shoulders and neck, now.  I also had it on my scalp at one time (causing me to start to go to bald).  I have itchy sores (that look like bug bites) on my shins - this is Crohn's.  I have arthritis in my hips, lower back, and knees - this is Crohn's.  It can manifest anywhere on/in the body, including your EYES.  Luckily, it hasn't affected me there, yet.  My energy level is zapped.  Many days, I feel like a zombie because I need rest.  Part-time has been helpful in that...I don't get run down as easily as I used to.  I am cold constantly and my heating pad has become my #1 vice.  Fevers on a weekly basis are pretty common for me.  It usually doesn't get too high - around 101, but it's still a fever.

Crohn's is an ugly, nasty disease.  It manifests differently in each patient and each patient is different in what affects them, what works for them, and what makes them feel better.  They used to perform surgery on Crohn's patients, removing the diseased portion of the intestines.  I am not a candidate for that as they would have to remove EVERYTHING, which is impossible.  I am slowly learning what I have to do when I am flaring and how I have to treat it.  This isn't just a stomachache as some people like to tell me.  This isn't going to go away.  Crohn's is permanent and progressive.  I am a severe case.  I can never go back to moderate or mild and it will not leave my body alone until I die.  It's somewhat genetic, they think.  I hope my daughter does not develop it.  There are many things that I don't do anymore.  I have to use my Crohn's as a reason to slow down.  It has prevented me from doing a lot with my family or friends.  I can't do as much around the house anymore without getting very tired.  It has even affected my sex life with my husband.  Believe me, you don't want to have sex when you are sore and have been using the bathroom all day long.  It's hard to feel sexy when your ass feels like it's going to fall off your body.  Crohn's has caused me to develop anemia, so once a week, I go to my hematologist's office and have an iron infusion.

I hope this post explains better what I (and many other patients) deal with on a daily basis.  I liken Crohn's to the worst stomach flu you've ever been through and having it every day for the rest of your life, plus hemmorhoids, psoriasis, arthritis, etc.  Nothing pisses me off more, though when someone tells me "well, it could be worse, you could have X (cancer, usually)".  Please do not diminish the severity of my disease, especially if you haven't lived it yourself.  I am NOT belittling cancer in any way, shape or form; but sometimes, I think it would be easier if I had cancer.  Cancer can be treated and it can go away.  Cancer can be stopped (of course, these are in the ideal situations and if it's caught early on).  Cancer receives a lot of funding and a lot of sympathy.  People don't "get" Crohn's (including many medical professionals).  Many people have never heard of it.  It is hard to look sick when you have Crohn's and therefore, people forget you are and think you are just being lazy.  There isn't as much money for research for it, or press for it even.  The drugs to manage the symptoms and slow down the progress of it are very expensive.  Luckily, several of the BIG drugs have programs to help defray the costs.  If you have Crohn's, most private insurance plans will deny you coverage.  It is a preexisting condition on major medical.  It's hard to live with and I have to live with it for the rest of my life.  My daughter has seen the effects of this disease first hand.  At the age of four, she has convinced herself that she also has Crohn's and will not eat anywhere except at home for fear of getting sick in public.  She complains of frequent heartburn and tummy aches because I do.  She worries about me quite a bit and tells me all the time she misses me (she is afraid I will go to the hospital again).  She is very interested in the field (as well as hematology) and has decided she wants to be a doctor or a nurse to help people.  Still, it's sad to know that my disease has caused her to develop...well...almost an eating disorder.

In case you haven't noticed by now, I hate Crohn's Disease.  I hate what it does to me and so many other people.  I hate that it has become such a big topic on my blog, rather than my life outside of my disease.  I hate that people don't understand it.  I hate that it has affected my family.  I hate that my little sister has a very similar (but different) disease and suffers from that immensely.

If you made it through this post, thank you.  If I disgusted you...well, good.  It is disgusting...and it's a reality for almost a million Americans.