The message was clear…

I try not to dwell on the past but in order to understand me, this disease, and why I am the way I am today-living with part of my intestine protruding out of my body with a bag attached to my side-I have to share it.  On the days that I feel like crying, giving up, or hiding from the world…I write.  I write from the depths of my soul and I share my story to help other’s feel like they aren’t alone in this journey.  With that being said…this is the transition from Pomerado Hospital to going home.

By this point it was weeks of being told that once my platelet count was good, I could go home.  After a month and a half in Pomerado Hospital I was ready to leave.  However, my Doctors insisted that my platelet count had to be a certain number before I could be released.  Every morning, during morning rounds, I’d ask my numbers-and do my best to remember the answer by the time my mom and mother in law showed up.  Still on Dilaudid daily, mixed with Benadryl and other medicines, it was hard to recall a lot.  However, I remember the morning my Doctor came in and said that I could go home.  I was so excited to get home to my puppies and to be able to sleep in my own bed.  At this point I still had the picc line in my neck-and I remember my husband being the only brave soul in the room to stay and watch as they pulled this long tube that went in through my neck and was (for lack of better words) sticking into my heart.  It takes a lot to make a Marine weak in the knees..and twice now he’s had to endure the same displeasure of seeing his wife having long tubes pulled out of her.  Nonetheless, he didn’t faint and for his strength during a difficult time, I will always be grateful.  I remember when the tube was being removed, the Doctor asking me, “Do you want a picture of this…” and I couldn’t bring myself to look at the tube (approximately the length of my arm) long enough to get a picture.  Looking back now, I wish I had-but who knew I’d have such a long story to tell.

On the drive home from Pomerado Hospital, with my husband, I remember crying tears of happiness and sadness.  I was so happy to finally be out of the hospital, after being stuck there for so long. Everything seemed new, after a month and a half of pure hell…I was in the car and listening to the radio.  The world certainly didn’t stop because I was sick, and the new songs on the radio were music to my ears-literally.  It was the strangest feeling, but I remember getting into my car (the passenger seat) and just feeling the sunshine beam into the car as we drove home.  It felt amazing, with the sun glistening against my snow-white skin tone, I remember feeling free-finally free.  It was the little things that I took for granted before…like riding in the car…that now..felt entirely different to me.  I remember pivotal moments throughout my illness, the day I sat outside in the rain as my mom wheeled me around the parking lot while it sprinkled tiny rain droplets on my hospital gown, and the day I left Pomerado Hospital.  I remember the feeling of pure joy, that until then I’m not sure I experienced.  Pure joy, pure appreciation for life-my family and close friends.  It wasn’t a vacation (by any means).. but to me these different memories I have in and out of the hospital are some of the best memories and better than any vacation I have ever been on.

The sadness I felt was beyond words, but I’ll do my best to explain the unexplainable.  Imagine this, entering the hospital with hopes and high expectations that not only would my doctor fix what was wrong-but in turn make things all better.  I mean this is why they get paid the big bucks right?? This was not the case for me.  Not only was I told there was nothing else he could do, or offer me for pain relief, but now I was preparing myself mentally and physically for the next step.  When I left Pomerado Hospital, I already knew what was to come.  I already had an appointment with Dr. Sandborn (who came highly recommended from Dr. Lee).  I needed to prepare myself mentally as the inevitable was coming.  Through the process at Pomerado Hospital, and even into the first meeting with Dr. Sandborn-I had no idea that removing this diseased organ from my body would mean anything other than simply removing my colon.  However, it’s not that simple-and perhaps I was na√Įve, or perhaps I was in too much pain to understand all the options as they were presented to me over the past few months.  Either way, when Dr. Sandborn explained the process of removing my colon-I remember looking to my mom in shock.  With a look of fear and panic as if to say to her “their going to do what and put it where?”  As Dr. Sandborn suggested other drug therapies, which I quickly negated, the message was clear to him-surgery was MY only option and hope for relief.  Without any other solutions to offer-he provided the referral to see Dr. Sonia Ramamoorthy.

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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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