Remicade

Taking it One Bag at a Time

Posted on by JER

The hardest thing in the world is to learn to accept that you can’t change or control what happens to you.  Today, I’ve gained some good news–and although it’s not something I’m totally comfortable sharing with everyone today, I hope to eventually be able to share all that I’ve learned through the process of being sick.  I’ve learned that I have to be my best advocate for myself.  If I don’t think something is ok, I say so-especially when it comes to my medical care.  If I think I should have an IV in my arm versus my hand-I will say so.  Where as, in the beginning, I was more timid and unable to voice my thoughts for fear I wasn’t right. When it comes to your body and your life-whatever you think is best for you -is.  It took me many surgeries and years to come to this conclusion.

The Stress of living with this illness can be almost unbearable at times-I’ve said this before…I have to concentrate to concentrate.  It’s hard, this disease is one of the worst situations I’ve ever had to deal with.  There are days when I feel like I can do this, and then there are days when I know I can’t do it.

Lately, I’m struggling to keep weight on.  (I know, I know…poor me.)  But it’s not fun to have your clothes hang off of you–espeically when you like the clothes you own.  I’ve never known the struggle of being “thin” until I got sick.  Then I learned quickly, the grass isn’t always greener on the other side.  Even the smallest ostomy belt doesn’t fit because it’s pulled as tight as it will go-but it’s still not tight enough.  The struggle is real, and my real point is–the struggle is real for everyone.  Everyone has something, or many things they don’t like about themselves.  I’ve become extremely insecure with my body since gaining a bag.  I know most ostomates are proud and wear their bag as a symbolic badge for courage–and I commend every one of you who see it as a strength.  I unfortunately, see it as my weakness.  I’m not comfortable with it and it constantly feels foreign to me.  I’m not writing this as a “poor me” blog-but I’m writing this for everyone else who also hates their bag today.  It’s ok to hate it, and it’s ok to love it–and it’s even ok to have a love/hate relationship with it.  The bag saved us, but it also replaces a piece of us that could no longer manage to survivie in our bodies.  In a way, every day I mourn the loss of my colon and the representation of what it meant for me to have it.  Normalcy.  Having a colon is “normal”-so it would only make sense that having that creates a sense of normalcy.  On the flip side, I feel this is also why so many of us are desperate to pop any drug into our mouths that may even offer a slight chance of hope for normalcy.  The hardest thing is rembering and reminding oursleves everyday that we are a version of normal–our normal-but it’s taken me years to convince myself of this and I’m still working on it.

Along the way, through anal manometry testing, dilations, pokes and probes I’ve learned that no matter what curve ball life throws-I can do it.  I’ve had procedures that would make you squeemish at the thought, and I’ve been so close to death’s door that almost anything else seems trivial.  Yet somhow, I push through.  Sometimes it’s hour by hour and sometimes it’s day by day-but I keep pushing through.  I’m setting goals and achieving them, and I’m remembering the important things about life once again. Taking it one bag at a time, we get by with a little help from our ostomies.

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We all endure pain…but in the end-it is how we handle that pain which builds our character…

Posted on by JER

I often feel as if I’m stuck in a body I no longer recognize.  It’s as if my insides are winning, and my body’s appearance on the outside now displays all the damage from Ulcerative Colitis.   Whoever said this was an invisible illness was wrong.  If you have Ulcerative Colitis and live with the pain on the inside and behind closed doors, eventually your outside appearance will reflect what your insides are yelling at you.  The pain will ultimately wear you down so much, beating every last ounce of energy you had, until there isn’t any other options left but to choose the inevitable.  We all suffer in silence and deal with the embarrassment and daily struggles of living every single day.  What happens when you realize you have nothing left and no other choice-you fight some more.

The weeks after getting out of the hospital I remember feeling the withdrawal of the pain medicine, and being extremely sick and fatigued-to say the least.  It was a hard transition, as I was still taking meds for not only the pain, but also for the C-diff I had acquired while in the hospital.  I was sent home with a bunch of medicines and also a limited amount of pain medicines, as Toxic Megacolon (TM) was also a worry for my doctors.  I remember being warned repeatedly, while in the hospital, that if I asked for too many pain medicines that TM was a likely possibility.  Obviously, the pain far surpassed anything I could tolerate, and without much thought I continued to take the pain medication.   I took Dilaudid in the hospital and Hydrocodone when I got home.  After being on the pain medicines for so long, my body became used to having those drugs, and I experienced what I would later realize was a withdrawal.  I remember laying on the couch tossing and turning and feeling as if I was going to puke.  I did a few times, and it took days of feeling not well to feel “better” again.  That feeling of unbearable pain mixed with prednisone, and about half a dozen other medications didn’t help much during the withdrawal process.

I remember being at home and feeling absolutely miserable, everything was getting to me, and unfortunately for my family-no one was safe.  Life wasn’t fun for several weeks, and continued even beyond when I began to deal with the trauma of losing my colon.  It was an emotional roller coaster, to say the least.   I was lucky enough to have had my family around during such a difficult time, and it was a hard process.  A decision I had to make that wasn’t easy.  In my mind, I had exhausted all of my options.  I had tried the holistic route, I tried the medical marijuana route, and I had tried every drug imaginable.  After my Remicade ordeal, I was no longer a desirable candidate for Humira or Imuran nor was I brave enough to experiment with the drug Entyvio that was approved by the FDA in May 2014.  The road was narrowing with less and less options and the only path left, or so it seemed, was the road that would lead to the removal of the diseased colon from my body.

During my first meeting with my surgeon Dr. Ramamaoorthy (in mid August-2014), she explained everything and it all sounded relatively routine.  She explained the three step surgery to me in relatively simple terms.  Step one, go in cut out the diseased organ (colon) and create the stoma.  Step two (three months later) go in and create the “J Pouch” while rearranging my insides completely-in conjunction with tacking up my fallopian tubes out of the way (as to not create more scar tissue and keep them out of the way of the J Pouch).  Step three (3 months later) the final surgery and “the takedown” of the stoma and the reconnection of my stoma back on the inside.  It all sounded simple, straight forward, and as I mentioned earlier, routine.  However, I should have known I would be the extraordinary case that wouldn’t go as planned.  From the beginning of this entire diagnosis of Ulcerative Colitis I have been given a hard time-from the Doctor’s misdiagnosis, to the lack of proper medical treatment at Balboa Naval Hospital, to my stay at Pomerado Hospital that, certainly did not go as planned.  It took me awhile to understand the process and what would be happening to me.  In fact, I feel like I was in such a whirlwind of pain and anticipation that I couldn’t even recall what she said to me-lucky for me…my family was right there to remind me.

I can’t describe the pain well enough to help any of you who don’t have UC understand what it’s like.  All of my life, I’ve eaten whatever I wanted…without much consequence- be it weight or anything else…and now I could only eat bland food.  As everyone’s suggestions were taken under advisement-the message my body was giving me was clear…there wasn’t anything I could eat and no magical recipe of foods that would make the pain stop.  Coffee, my love for coffee, was a distant memory in the weeks leading up to my first surgery.  So on top of the physical pain, and the continuous embarrassment, was the daily emotional stress of figuring out what to eat and when to eat it.  If I had to leave the house (for a doctor’s appointment), I would refuse to eat anything several hours before and while I was out of the house for fear of an accident.  At times I considered starving myself, hoping that would help my colon relax and feel better.  Emotionally, I was a wreck.  I was angry, sad, fearful, hopeful—but angry.  The prednisone didn’t help my anger (that’s for sure).  Everyone in the world can think they understand…but until you’re walking in the shoes of someone who has UC…you have no idea the pain we’re enduring.  Depression usually follows a diagnosis of UC (and I wasn’t the exception).  You realize that a part of your life is over; the part where you can eat and not worry-have a drink and not worry…or do anything and not worry.  Car rides became scary, and even trips to Target became scary (as it’s a huge and overwhelming store).  Anywhere I went, where I didn’t know if there would be a public restroom close by would send me into an anxiety filled panic.  There’s a saying, “You know you have UC when you choose where to shop and eat based on their public restrooms.”  This was how I lived my life for 8 months before I realized, this wasn’t the kind of life I wanted to live.

The message was clear…

Posted on by JER

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 naïve, 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.

🇺🇸 The Pinning Ceremony 🇺🇸

Posted on by JER

One of the proudest moments for a military wife is when she is asked by her husband to pin him to the next rank. I barely remember Josh coming in to tell me (when he found out for sure) that he would be pinned on August 1, 2014 for Sergeant.  I was so happy for him-in fact I remember asking Dr. Lee weeks prior, “Do you think I’ll be out of the hospital by August-I have to pin my husband he’s going to be promoted.”  Looking back now, his response was always the same, “Let’s try for then, we will see though.”  I now realize that this was his very gentle way of saying, “probably not.”  Nonetheless,  I was beyond proud of my husband.  I wanted to attend that pinning ceremony on base more than anything!  That’s what kept me going was having things to look forward to.  Unfortunately, I missed two important events in both my best friend, Andrea, and my husband’s lives.  I had been waiting years to be Andrea’s matron of honor and I waited even longer to pin my husband to the rank of Sergeant.  These were huge milestones for both of them-and ulcerative colitis took both of those special days away from me.  For that, I will always be both sad and upset that I wasn’t there to partake in their special events.

I remember when my mom, my mother in law and Josh came to the hospital and told me that we would have our very own pinning ceremony in the hospital for Josh.  I was determined to pin my husband to the next rank, in a way-I earned it too.  Some wives will say you should never wear your husbands rank and I agree-but when you stay with you husband from the rank of Private all the way up through–there’s something to be said for that.  It was a happy time for us both, and I was excited and nervous for my husband’s co-workers/friends/fellow marines to see me in the state I was in.  Unfortunately, from the plateletpheresis treatments along with my body enduring so much trauma in such a short period of time, everyone was able to look into my eyes and see the pain-literally.  It was an odd vision, I’ll admit, but it was scary to look into the mirror-even for me. How could I expect anyone else to be able to look at me without wincing.  From what I remember of the pinning ceremony that we held in Pomerado Hospital for Josh, no one looked at me strangely.  They all had this open warm heart that wasn’t judgmental, however I remember not being able to look anyone in the eyes.  I didn’t want to scare anyone and I also requested that no pictures be taken.  I didn’t want anyone being able to look at me later on, nor did I really want to necessarily remember that I wasn’t able to pin my husband on base in front of his command and superiors in that patriotic outfit I had envisioned in my head.

Instead, I wore this very cute leopard print ensemble my mother had put together for me.  With all the IV’s that were in my arms and neck it was hard to wear anything other than a hospital gown.  However, my mom had purchased this leopard print dress and matching flip flops-an outfit I will never forget.  It was beyond sweet, and only aided in creating a memorable evening.

Our mothers and friends did a great makeshift pinning ceremony for us though-I remember being so highly medicated that when I went to pin Josh I actually put it on upside down.  Newhouse quietly whispered to me, “It’s upside down.”  I remember snapping back into the reality of what I was doing at that moment and nervously giggled-as I think prior I was in a fog of pain medicine and uncertain feelings.  Although everyone was supposed to be staring at Josh, in that moment, I could feel all eyes on me.  Ethan Newhouse, Katie and Greg Hartig along with Diane and Alec Stoddard and their son stood around us as I pinned my husband.  Without the help and support of our military family members as well as our mothers, I wouldn’t have the wonderful memory of pinning my husband.  I will always be grateful and feel blessed that as my illness grew worse I had the support of other military families along the way.


  

What remicade did to me..and the result was TTP

Posted on by JER

Please watch the video of myself in the hospital and take it as a warning of not only what Remicade can do-but how different drugs can severely affect you.  When you have a weakened immune system, the chances are significantly higher that some of these drugs can negatively affect a person.  I read all the time that people are going to try this drug or that one-but seriously…do your research and know all your options.  Doctors aren’t fortune tellers and they can’t predict how your body could react.  They can give you the options at hand,but it’s up to you to decide if the benefit outweighs the risk.

This will be hard for some of you to watch-and I am forever grateful to my husband for taking these videos. Without them, I don’t think I would truly understand what happened to me.  I am told stories but until I saw it with my own eyes-I don’t think I could have ever realized how bad things really were.  When your sick, really really sick-you don’t remember the details.  You remember the last memory and the first one if/when you’re lucky enough to return to a somewhat normal state of mind.  When you watch this video I want you to notice the “moon face”…which was a result of being on the drug Prednisone for so long.  A picture is with a thousand words-but a video speaks for itself.

My 1st Hospital stay- Pomerado 🏥

Posted on by JER

As I checked into Pomerado Hospital on June 28, 2014 I had no idea what I was in for (and neither did my family for that matter).  I checked into the Emergency Room after an entire day of running to the bathroom.  I believe when I checked in I had gone to the bathroom approximately 12-15 times that day…and by that time all that was coming out was blood with immense pain.  After the normal ER questions, blood pressure and blood draw I was admitted into the Hospital.  Admittedly, I can’t recall every detail of my nearly two month Hospital stay-but I can recall most of it in bits and pieces.

After I was admitted we tried every drug possible (and by we I mean my GI doctor-Dr. Lee and I).  One of the last drugs I tried was called 6-MP or Mercaptopurine which is used to treat leukemia and is known as a chemo pill.  Ingesting this drug scared me more than anything, little did I know that taking Remicade would be what almost killed me.

I had my first Remicade infusion on July 7th and with little to no relief, my doctor assured me that after the second Remicade infusion is when most people start to feel better.  So, slightly earlier than two weeks from the first Remicade infusion, on July 18th, I had my second Remicade Infusion.  It was at this point that I think I started to blank out quite a bit.  I do know that my Doctor’s colleague came in for morning rounds, as Dr. Lee was on Vacation that week, and when he yelled into the bathroom all I spoke was jiberish.  He then looked at my husband and said, “What did she say…” and my husband responded with “I have no idea.”  I have no recollection of this…but it was then that my husband knew something was wrong.  At first, my husband was suspicious of a drug overdose…as I wasn’t making any sense and speaking in what he would refer to as “chipmunk” talk.  I was speaking fast but making no sense.  I would know where I was born, but not my birthdate.  It was as if my mind was battling for reality.  I remember my friend Kelsey visiting me, but only later on when I was conscious and talking would I ask my family, “Did she dye her hair blonde?”  Everyone was impressed that even in my state of anaphylactic shock I could recall such events.  I also recalled things that were untrue…I could have sworn I had something taken from me and put on a plane.  Later I would realize that my peace of mind about the future was what would be taken.

I was diagnosed with TTP (Thrombotic Thrombocytopenic Purpura) by a kidney specialist approximately four days into the darkest time in my life-up to this point.  For those of you who have no idea what TTP is-it’s an extremely rare blood disorder where the platelets form like spider webs and when red blood cells pass through it cuts them in half which caused small blood clots all throughout my body.  As a result it looked as if I was having mini strokes (or so my mother would tell me later on).  It took my bone marrow being affected, my liver and kidneys almost shutting down for someone to figure what was wrong.  I almost died because TTP was not a listed side effect of the drug remicade.

It took a pic line in my neck and ten plateletpheresis treatments where everyday for three hours through the pic line all the blood was drained from my body spun in a machine to take out all the bad platelets and replaced with donor platelets.  So the next time you donate blood, plasma, or platelets think of me-it takes a lot of people to help one person.  And if you’ve ever donated…maybe you saved my life!

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