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Today is world IBD day…a day to educate one another about the different types of inflammatory bowel diseases.  I stopped to think about what world IBD day really means to me.  Some of the words that came to mind were brave, purple, strong, support, steps, courage, fear, strength, pain, and awareness.  What I write, the world might read.  Words are powerful.  The day I was diagnosed-with just one word, my world changed.  Colitis.  I’m going to do my best to get through this blog post without a tear today-and so far so good.

 

What I believe a few of my IBD friends would want me to say…we are strong.  Mentally and physically we’re fighting all the time.  We’re fighting to make it through the day, and in a way we’re magicians too.  We hide the problems so no one else can see.  We pretend most of the time that everything is ok-when really we are counting down the hours until it’s an acceptable time to crawl back into bed.  In fact, most days-my biggest accomplishment might be staying awake all day long (usually this doesn’t happen-which is why it’s an accomplishment).

We take pills, and meds and more pills until we’re blown up on prednisone.  This is the reality of an IBD patient.  Since no one knows what causes it–truly–and everyone’s body is unique, there isn’t one clear cut way to manage IBD patients.  So typically, I’ve found, doctors treat the symptoms instead of the disease (but not before giving  Apriso and Lialda whirl).  You’re bleeding-try Prednisone.  You’re tired-take iron.  You’re nauseas-take Zofran.  You’re in pain…now wait a minute…how much pain..on a scale of 1-10.  Ok, so my answer is usually 7/8…because in my opinion there’s what we call “tolerable” and “intolerable pain.”  IBD patients know, pain is inevitable –it just is.  Therefore, if we’re in pain and we’re actively seeking out help it’s for a reason.  If we had a slight pain, we’d be out doing something we enjoy.  Ok, so the pain is a 7…take Hydrocodone or Dilaudid.  Your back hurts… try Lidocaine patches.  Things still aren’t going well…let’s try 6MP..it’s a chemo pill but it’ll be ok.  All the while, we keep swallowing pills and trying to keep the symptoms at bay.  Have you ever met those people who say, “I don’t like to take pills”–and you think…they don’t know how bad a pill is until they’ve tried to swallow a potassium pill.  Those potassium pills are no joke!  We’ve also met those people who cringe at the sight of blood or getting an IV put in…and again we think…they don’t know pain until they’ve had to have potassium intravenously pumped into them (which burns like fire in your veins).  Oh and by the way, I’ve had/used all of the above.  So you can’t sleep because you’re up going to the bathroom in conjunction with the Prednisone that (had I known in college keeps you awake-I might have been able to pull an all nighter better–kidding mom)…but seriously…Prednisone is the devil in pill form.  It keeps you wired…so…try Ambien they say–it’ll help they said.  HA!  If I had a dollar for every time a doctor told me to try something, I’d have enough money to have a lab created colon made.  I could go on for days, the point is…IBD is hard.  They can pump all these miscellaneous drugs into our veins but at the end of the day–we’re stuck.  We’re at the mercy of all these doctors and specialists.  At times, it feels like the blind leading the blind.  Oh…you’re also feeling sad/miserable/depressed because you have a disease that you didn’t plan for and you’re life now revolves around where the closest bathroom is…take Zoloft, Lexipro or Wellbutrin (dealer’s choice really).  If you think I’m utilizing humor mixed with a side of sarcasm to lighten this blog up–you’re right.  The funniest things are true…and I am by no means even stretching the truth.

Awareness is crucial to the success of discovering a cure.  One day, one step at a time we’re all trying to help solve what seems unsolvable.  Through support groups I’ve made friends, we all have similar symptoms have taken similar drugs and understand the affects–but we’re all different and we don’t understand how this happened to us.  All diagnosed before the age of 30 with different backgrounds, different genetic makeup, yet we all have one thing in common-IBD.


 

 

My 1st Hospital stay- Pomerado ūüŹ•

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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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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