Pretty and PiNk ūüíď

In the weeks leading up to my first hospital visit, I had tried everything. I was drinking liquid chlorophyll mixed with aloe vera juice (which¬†was a disgusting combo, tolerable, but not ideal).¬† I had also tried VSL#3, which I still have in my refrigerator and refuse to throw out because they were so damn expensive-not to mention it was¬†hassle trying to get my insurance company to cover it.¬† Apparently, insurance will only cover the powder packets of VSL#3 and not the pill form.¬† I had a prescription from Dr. Lee for the VSL#3 (pills)…but somehow this was an over the counter medication-go figure?¬† So, needless to say, after calling several people trying to get it straightened around I was switched to the powder packets of VSL#3…and a 30 day supply was somewhere around $50.¬† However, for the pill form it would have been around $100.¬† All this for a probiotic¬†that “might” work.¬† I wasn’t really sold on the idea that this probiotic could be my key to remission, but I thought I needed to make¬†an attempt and a probiotic couldn’t hurt.

By¬†mid June, it was getting¬†to the point where I didn’t feel comfortable leaving my house anymore.¬† I would get the urge to go to the bathroom and sometimes I couldn’t wait.¬† Ulcerative Colitis was running my life¬†one day at a time, one hour at a time and I lived each minute with worry and in distress over when I would need to run to the bathroom next. I soon realized that if I needed to leave the house, I couldn’t eat anything prior to leaving or it would become an uncomfortable nightmare.¬† Going to lunch with friends and grabbing a casual drink were no longer options-I stuck closely to the people who knew my situation and knew it well.¬† The only thing worse than having Ulcerative Colitis is having to explain to new people what it is and what it entails- 98% of the time no one has heard of this let alone understands what it is.¬† It was depressing and uncomfortable to talk about, I was sad at what my life had become.¬† I used to go to the gym all the time, that was my release. As I started to lose weight, which was¬†a direct result of not being able to eat healthy and everything going right through my system, even eating became depressing.¬† I could eat burgers without a huge problem, anything else was a risk I wasn’t willing to take.¬† All fruits and veggies were to abrasive for my colon, it seemed that almost anything I ate was irritating the lining of my large intestines.¬†¬†

I have always been a girl who could eat anything, even if I didn’t like it-I’d eat it.¬† I was never a fussy eater and I considered myself to have a well rounded diet. Sure, I loved my fast food and still do-however, even after a few fries¬†on my 30 second drive home from the drive through¬†would send my colon into spasms.¬† Eating simply wasn’t worth the pain and embarrassment anymore. I even thought to myself, I wonder if I just stop eating completely what would happen.¬† When you’re in so much pain, things cross your mind that normally wouldn’t.¬† Soup was irritating to eat, even broth…I wasn’t sure how much longer I could handle the pain.¬† The worst part was, and still is today, that people look at you like you’re fine.¬† I didn’t look sick, but my insides were screaming at all times.¬† I was in a constant state of panic-wondering where the bathroom was and if the urge hit…would I even be able to make it.¬† I was a prisoner inside my body.¬† Even today at my doctors appointment, I was weighed¬†in at 96 pounds…and the girl said to me “oh your tiny, I want to be tiny like you” and my response was “I don’t recommend this diet, it’s not worth it.”¬†¬†Do I think she meant to hurt my feelings, no, I do not. However, it sickens me to look at myself this skinny-I itch my side and all I feel is ribs, I look in the mirror and all I see are bones.¬†¬†Body image issues are also a huge part of having this disease, either your blown up on prednisone or your losing weight and nutrients because you can’t keep anything inside long enough to absorb the nutrients.

One day last June, I thought, I’m going to try medical marijuana-and in the state of CA it’s relatively easy to obtain.¬† I was hesitant, as growing up in NY I was always told drugs are bad, don’t do drugs, avoid the crowd of people who do drugs.¬† Here in California, it’s somewhat the norm.¬† So, I looked up the local dispensaries in the area and called one.¬† I told them I had UC and I was looking to buy some medical marijuana-the man who answered the phone was very nice (I found this company called Raw on yelp)…he told me where I could go to get a Medical Marijuana Card.¬† So I¬†drove to the facility paid my $40 dollars and went into a private room with a computer screen.¬† The receptionist told me that a¬†doctor would come on the screen momentarily and that I would talk face to face with him (like facetime). So I waited nervously, and the doctor came onto the computer screen and¬†asked me what my symptoms were.¬† I told him I was diagnosed with UC and I have a lot of pain.¬† Which, was all I needed to say apparently because his response went something like this, “Absolutely, you should be taking medical marijuana-it has been proven to help patients with UC and it is especially helpful if ingested.”¬† AKA…pot brownies.¬† After, obtaining my MM card I asked my friend Kelsey if she would go with me to pick out some pretty smoke pieces.¬† She agreed and we made plans to¬†go to Pacific Beach, CA (otherwise known as the mecca for smoke pieces in SoCal). There were probably half a dozen smoke shops within a two block radius.¬† So we went into two different shops before I found the perfect pretty in pink smoke pieces that I had to have.¬† They screamed my name-as anyone who knows me knows my kitchen is pink themed and cupcakes.¬† I loved the concept “cook for the cure” that KitchenAid does in support of breast cancer awareness, now if only I could get someone to endorse “cook for colitis”-we’d be in business!

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The Medicine Mix ūüíäūüíČūüíä

The days following my first colonoscopy, I remember having very mixed emotions.¬† I was almost immediately put on the drugs Aprisio, Prednisone (Pred), and Mesamaline enema’s.¬† The Aprisio didn’t seem to have any side effects on me, however the Pred absolutely did.¬† Most people say that Pred makes people very hungry, I didn’t experience this side effect at all.¬† Almost the opposite, although I could¬†contribute the lack of¬†appetite to the fact that every time I ate, I had to run to the bathroom in immense pain.¬† However, Pred did make me¬†extremely irritable.¬† I can look back with certainty and say, for sure, that Pred made me a miserable person¬†in an even more miserable situation.

Right after I received the confirmation call from Dr. Lee on April 8, 2014 confirming his suspicions for Ulcerative Colitis, he had me start with 40mg of Prednisone.   He told me during this phone call that he thought I should attend a seminar that upcoming Saturday at UCSD.  This seminar was hosted by the CCFA (Crohns & Colitis Foundation of America) and he thought it could be helpful to learn about this disease and gather more information from other professionals.

Well, has¬†anyone ever heard¬†that too much information is a bad¬†thing?¬† I’m here to tell you it is! I walked out of there that Saturday in a complete panic.¬† I remember seeing a girl with a mask on, she said she was on 6MP (a chemo drug¬†for leukemia) that is also known to help with ulcerate colitis.¬† Needless to say, both my husband and I walked out of that seminar after approximately five hours of listening to everything that can and might go wrong later on in life-from colon cancer to death.¬† The only thing I took from that seminar was that I was as good as dead-no joke.¬† This was precisely what I told my husband when I got into the car that afternoon.¬† My head hurt from absorbing so much negative information that afternoon.¬† I mean, not a word spoken in that classroom setting was positive-nothing.¬† So my advice, if you are offered by your doctor to attend one of these “informational seminars”- Politely decline.¬† Nothing good can come of panic and stress–except more side effects of ulcerative colitis.¬† In fact, I remember at one point during the seminar having to run out to go to the bathroom because whatever information they were describing was sending me into crampsville and panic mode-big time.¬† I guess I should also mention, that when I would get the urge to go to the bathroom…there wasn’t always stool coming out with the blood.¬† It was as if I was passing blood clots, and all the while, in excruciating pain.

I think it is extremely important that I talk about the Mesamaline enema’s I was given, because I do¬†feel in my¬†heart, that this only escalated my symptoms.¬† An enema, for anyone who may not be familiar, is inserted into a person rectally-approximately 60ml of liquid that has to be held in for an extended period of time.¬† Just to give you a comparison,¬†a shot glass holds about 43ml.¬†¬†With that being said, I’m sure you can sympathize with me and how uncomfortable doing the enemas were. Prior to starting the enema’s I was having slight discomfort when¬†passing a bowl movement (BM)…but it¬†wasn’t until after I started the enema’s, that I feel things got increasingly worse.¬† I would do the enema at night, and as instructed by my doctor I would have to try and hold it in as¬†long as possible.¬†¬†So not only was the process of¬†doing the enema uncomfortable (as the tip of an enema bottle is about two inches long), but the pain following-once the enema was in-was excruciating.¬† I remember thinking if I can just get through one episode of Sex and the¬†City¬†I can go push this¬†liquid out immediately after. I will admit, after about ten minutes of torture my body would¬†acclimate to the pain and it became tolerable for the remaining twenty minutes of the episode.

The side effects listed for the Mesamaline Rectal Suspension Enema¬†are as follows: mild nausea, vomiting, stomach cramps, diarrhea, and gas.¬† Where as the more serious side effects are the following: severe stomach pain, cramping, fever, headache, and bloody diarrhea.¬† Although I did not have¬†all of the side effects, I did have a few.¬† I had¬†severe stomach pain, cramping, and bloody diarrhea.¬† I mentioned this to my Doctor, and he didn’t seem highly concerned, as I’m sure¬†no one¬†had reported to him that¬†enema’s are fun.¬† Again, it was as if we were pouring gasoline onto hot embers-and the enema was the match.¬† I think it was hard for my Doctor to comprehend that nothing was working for me.¬† None of the medicines seemed to be doing any good.¬† By the end of April, I had been on Prednisone for several weeks and my doctor thought it might be a good idea to weaken the dose.¬† As everyone knows you can’t stop taking prednisone cold turkey-you have to decrease by 5mg each week.¬† In fact, I remember a four day stint in late April¬†where I had no bleeding and no issues and I thought-things are finally getting better.¬† Until that fifth day when the symptoms came back at full force.

As April turned into May, and my¬†symptoms were worsening I quickly became discouraged.¬† I thought by now, something would have started¬†to work for me.¬† It was in¬†May that the urge to run to the bathroom became more frequent-and at times it was hard for me to make it.¬† This disease had begun to take its toll on me.¬† I remember in¬†May thinking-ok as long as I’m off Prednisone for my birthday I will be happy.¬† I held onto this hope for most of¬†May.¬† That is, until I was down to about 20mg of Pred and Dr. Lee upped my¬†dosage.¬†

By the end of May, I lost hope that I would be able to have a drink to celebrate my birthday.¬† I¬†gave up the idea that I would be ok by June 12th.¬†¬†It was at this point, that I¬†began setting short term goals for myself.¬† I knew by the end of May I wouldn’t be celebrating my birthday as I traditionally had, but I¬†was determined to be ok by¬†July¬†because I was the Matron of Honor in my best friend’s wedding in Chicago.¬† I had looked forward to¬†being in her wedding for years, and the thought that I wouldn’t be able to attend never entered my¬†mind.¬†¬†Even when I entered the hospital for the first time on June 28, 2014-the thought that I wouldn’t be able to attend her wedding still didn’t enter my mind.¬† I was in denial, obviously.¬† However, not only would I not be¬†able to attend her wedding but I wouldn’t even know my own name by the¬†time her wedding day would arrive.

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…The result was Ulcerative Colitis ūüí©ūüí©ūüí©

I remember arriving to the surgery center in Escondido and feeling anxious, not nervous, but anxious.  I was ready to get some answers-something concrete.  At this point I knew something was wrong, but I wasn’t ready to think the worst.  I thought he would find something simple-something that could easily be handled with a medication.  I arrived with my husband, and sat down to fill out the necessary paperwork.  They had The View on the television in the waiting room, so I watched and waited for my name to be called back to be prepped.  Finally, it was my turn.  The nurse called me back, and as she was putting the IV into my fresh, practically virgin veins, I remember her asking me why I was in today.  When she asked me this, there was almost a judgmental tone to her question.  As if, I was way too young to be having a colonoscopy.  Which, in retrospect, I can understand because as I recall the waiting room was full of much older individuals-at least in their 50’s.  But here I am-no makeup, pale and looking about 15 years old to this woman…and I’m getting prepped for what many people won’t experience until they are in their 50’s.  Speaking of experiences, let me back up to the night before.

The day before anyone does a colonoscopy they have to do this terrible, awful, disgusting prep for the bowels.  That’s right, a bowel prep, or as I’ve also heard it called-colon blow.  Not only does this stuff taste bad, and as I’m writing this I can feel my throat start to recall the horrible taste, but it also makes you have explosive diarrhea.  So here I am, home alone…it’s the day before my colonoscopy, and it was about 2PM and all I’ve been able to have that day is clear liquids.  So I start the prep, trying to go into this situation with an open mind-despite all the negative things I’ve heard over the years, when I literally start to gage.  (I guess this is where having a stoma later on would be considered a blessing.)  No colon=no colon blow!  So anyways, I’m sitting there gagging trying my best to be strong, when I start vomiting.  So I call Dr. Lee, and he allows me to have some saltine’s if I can get this colon blow down.  I must admit this did help a lot, although still extremely unpleasant.  I also remember facetiming with my mom in order to choke this down, as I mentioned I am home alone and my husband is still at work.  I was crying, in pain from the cramping and gagging- the whole bit.  Finally, after several hours of choking that crap down and having to run to the bathroom every four minutes, I am done for the night.  That is, until the next morning when I had to attempt to choke down another 8 ounces of the colon blow.  Which, by this time I was basically peeing clear out of my bum. So I only drank half of the dose recommended.  I figured, that was good enough!  I remember telling myself, you will only have to do this once.  A little na√Įve, I admit, but I never expected that I would have to take colon blow twice more before September.

So, I’m sitting in this mini prep room, when the nurse had asked me what brought me in today.  I told her I was there to have a colonoscopy and she asked what my symptoms were.  I explained about the bloody stools and I remember her response being, “Your too young to be sick, what do you do-is your job stressful?”   I thought for a moment and replied, “Yes, I have high sales goals and it is a stressful environment.”  I remember feeling stupid, because anyone who knows where I worked would think it was a dream job.  I, at the time, was employed by a luxury jewelry retailer.  So retail alone is hard, standing all day, constantly crouching down to get into small spaces-it’s hard on you mentally and physically.  Keep in mind when I first started having symptoms it was just after the hardest, and busiest sales Holiday of my career.  I was extremely stressed out, working six days a week and my husband had just returned from a 9 month deployment that had been exended twice.  So needless to say, yes, I had gone through a very hard and stressful December and sales Holiday.  However, did I ever think to blame either my job or my husband for the strss-absolutely not.  I chose both my job and my husband.  To this day, I sill wish I was working-and I wish that I was able to be at work instead of home and sick-however…we’ll save this topic for another blog day.  After I responded to the nurse she explained the procedure going forward.  I kissed my husband goodbye as he went into the waiting room.  I remember walking back into the surgery room and laying down on the bed that they had so nicely laid out for me.  It wasn’t long now until I was under local sedation and I remember, in a dazed state, seeing the screen to the side of me and seeing my insides on the TV.  Shortly after that I woke up.   As I was groggy and attempting to wake up, without having my glasses on everything was a blur, I could not see faces but I knew their voices.  My husband was next to me and so wasn’t Dr. Lee.  Dr. Lee explained that he had done biopsies, but he suspected it was Ulcerative Colitis.  I will never forget the tone of his voice, it was very kind, very soft and very empathetic.  It was as if he was giving me a life sentence he didn’t think I deserved, and later I would realize he was.  He said, I’m so sorry Jerica.”  Again, without my glasses I couldn’t see their faces but I heard my husband start to cry.  For the first time, I knew it was serious and I also knew that no test result would have to confirm Dr. Lee’s suspicion.  I had bleeding ulcers on my colon and the result was Ulcerative Colitis.

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The Sooner the Better! ūüĎćūüĎć

As I returned to¬†my job¬†at the end of February, it became increasingly difficult to be at work and continually bleed.¬† However, at this time I was waiting for yet another Doctor’s appointment at the end of March.¬† I received a referral from my primary doctor who said this doctor was the only one she trusted and that I should really look into seeing him.¬† When I called to¬†make the appointment, I had lost hope that this Doctor would be anymore helpful than the previous handful of¬†Doctors that I had¬†already seen.¬†¬†Much to my surprise,¬†I arrived¬†at Dr. Lee’s office at Pomerado Hospital where I was taken seriously for the first time.¬† He listened to what I¬†had to say, and could see the look of panic and pain in my eyes.¬† His response to my symptoms,”When¬†is the soonest you can do a colonoscopy?”¬† My reply was “The soonest you can schedule one.”¬† As I recall, my first appointment was on a Thursday and just a few short days later on April 2, 2014 I would have my first colonoscopy where¬†I would find¬†out¬†some answers.¬† Finally, I thought, my mind would be put at ease after months of not knowing what was wrong.

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The search for answers…ūüõÄ

As I anxiously awaited my appointment, the thought that anything could be seriously wrong never entered my mind.¬† I thought it would just be something that would go away-boy was I wrong.¬† When my primary doctor came into the room I told her my symptoms, which at the time only consisted of slight discomfort during bowl movements and blood.¬† She examined me rectally-which was less than comfortable and said she thought it could be an internal hemorrhoid that was bleeding.¬† But to be sure she referred me to a specialist in La Jolla.¬† So I left that day not feeling any sense of urgency to the situation.¬† When I received the referral to go to the specialist in La Jolla, I made the appointment as quickly as I could (no more than a few days after seeing my primary doctor).¬† I walked into the appointment hoping to find answers, and boy was I wrong.¬† This doctor’s “office” looked more like an at home office, with a plethora of ebay auction items, than an actual doctors office.¬† There were¬†vintage guitars and what looked to be like a 1970’s old brown examination¬†chair (which clearly was only there for looks).¬† After I explained my symptoms he suggested we do a sigmoidoscopy-and in the same breath he¬†said, “But I’m going to Germany for 10 days so we’ll have to wait until I get back.”¬† I walked out of that office thinking what a total idiot this guy¬†must be if he thinks I’m going¬†to wait 10+ days for him to get back from his vacation (all the while bleeding rectally).¬†¬†I couldn’t believe the¬†nerve of this guy, needless to say I left that office and never went back to¬†him again.¬†

As¬†we all know by now,¬†stress can certainly affect Ulcerative Colitis-and after leaving Dr. Idiots office¬†I was beyond stressed out.¬† It¬†was as¬†if no one in my life was taking me or symptoms seriously.¬† So the¬†next day I went to the Emergency Room at Balboa hospital, I thought that quite possibly I may be able to get some¬†assistance-NOPE!¬† Only to¬†get a scope shoved up¬†my bum¬†and be told to come see a “specialist” on Monday.¬†I was also told that the following day I would receive a phone call to schedule the appointment for Monday-all day Friday I waited for a call that would never come.¬† So as the weekend passed, I called the specialist early Monday morning. At which time she explained that it must have been an oversight.¬† I made the appointment for the very next day. And when I sat down with the third doctor¬†of¬†the week, the remedy they gave me (which still to this day blows my mind) was beyond ludacris.¬† After telling them I have been bleeding rectally for about half a month consistently-their remedy was to do sitz baths three times a day!¬† Looking back now, I can’t believe I allowed them to provide me with this solution. If I could give anyone advise, it’s if your bleeding demand a colonoscopy-that’s it.¬† Simple.¬† Might I mention that after 2 weeks of sitz baths their next idea was to increase my fiber intake.¬† Now we’re in the beginning of March, and my little amounts of blood went from slight to moderate and adding fiber to my diet was like pouring gasoline onto hot embers.¬† Which¬†at this point had¬†sent me into a full blown flare.