The second time my life changed completely

It was now October 2015.  I had just been promoted at work, after missing almost a whole week of work due to the flare up and had just finished my training for my new position.  My plan was to go to the doc, find out the meds were working, go back to work and get back to normal.  My body had other ideas.  I had ignored it again, when it was trying to tell me something was wrong.  And this time, it was going to teach me a lesson.

After a week in the hospital, I felt an intense and horrible pain in the middle of the night.  We (the nurses and I) thought it was just part of the flare up.  After my morning MRI, the doctor on staff at the time came rushing into my room and while she was trying to appear calm, she had a very concerned look on her face (which I didn’t notice at the time).  I remember most of that day pretty well.

My mom had taken the day off for another reason.  She had visited me that morning.  My cousin and grandmother were coming up that afternoon to visit.  My mom took off to go spend some time with my sister before their concert that night (they had tickets to see Noah Guthrie live…he is awesome btw).  I remember I was having a really hard time focusing, while my grandmother and cousin were talking to me.  It was during this discussion that the doctor came in.

With a worried look on her face, she informs me my bowel has perforated and they are transporting me to another hospital, if the ambulance can get there in time, to perform surgery.  But she assured me, if the ambulance didn’t get there in time, they had a surgeon at their hospital who could perform the surgery.  I, on heavy pain meds, still didn’t quite grasp the severity of the situation.  I texted my boyfriend to find out if he still planned on visiting after work.  He said he did, so I told him he’d need to contact my mom because I was being moved to a different hospital but I wasn’t sure which one (it would be almost three weeks later that I would realize where I had been moved to).

My grandmother frantically tried to gather things up and coordinate what should be done and what I wanted to take with me.  They had given me another dose of pain meds at this point, “and one more for the road.” And I told my grandmother to call my mom, I couldn’t make any decisions.  They loaded me into the ambulance and I proceeded to make jokes with my paramedics.  They were nice guys.  We joked all the way to the new hospital, me blissfully unaware of the gravity of my situation.

I started to sense something was really wrong, while at the new hospital.  The pain meds were either starting to wear off or something.  I wasn’t sure what it was.  But something wasn’t right.  They got me into the prep room and this is when things started going fuzzy. I remember crying with relief, as soon as I saw my mom walk up to meet me on the gurney. I also remember she needed signatures of witness to make a document legal.  I think it was the document that says she can make medical decisions for me.  It was tragic because the doctors weren’t allowed to sign it, legally.  So she had to ask strangers in the waiting room.  She came to me and handed the document to the surgeon.  While we listened to him tell me what he was going to do, I could feel myself slipping a bit and I remember just shouting, “I don’t care what you have to do, just fix me!”

I also remember telling my mom to go to the concert she had planned to go to.  I knew she needed some kind of distraction or the next four hours (how long my surgeon thought it would take) in absolute agony.  She wasn’t sure she was going to go, but I demanded she do.  She did end up going, with my sister.  They had some teary moments and at one point, my sister got to meet Noah’s father who then introduced her to Noah, as she told them the story of what was going on.  To this day, I don’t think Noah truly knows how much he helped my mom and sister.

At some point, while I was in surgery, my boyfriend showed up, in the waiting room.  He was the only one there, when the surgeon came out of surgery.  He revealed to my boyfriend (of only 3 months) that surgery was done, I had pulled through, but had that surgery been a half hour later, he probably couldn’t have saved me.  Yeah, it was that close.  I was literally dying, when I felt something was not quite right.  Oh yeah, and that little tidbit, I wouldn’t hear about for almost two months.

When I woke, my entire large intestine had been removed.  My colon had been so infected and so diseased that every time he tried to fold over and staple my rectum, it fell apart.  Finally, he had to attach to the base of what would become my scar line and create a fistula, so the infection would have a way out and that bit of rectum could heal.  I had an ileostomy bag and a mucous fistula.

For the next two months, I would get four drains inserted into my abdomen because of the amount of infection that had poured into my abdomen.  The nurses and my surgeons would be amazed that I never went septic and they never had to reopen me.  I would blow their minds with an amazingly up beat attitude about the whole thing.  My son would make them all smile with his adorableness, when he visited, and I would recover at a rate much faster than my surgeon had originally planned.

I’ll be honest, what kept me going and kept me so up beat was knowing my boy wanted me home and I wanted to be home.  I won’t lie, there were some days when I fell apart.  My mom’s birthday would come and go and I missed her terribly.  My son would call me and ask me to sing him to sleep, something we used to do every night and I could barely get through “You are my sunshine” without my voice cracking.  I would spend the next few hours balling my eyes out.

But the majority of the time, my positive attitude is what got me through my two months in recovery.  If you ever have to go through a major, life-changing event, remember to stay positive.  If that means you need to seek counseling just so you can find the positive in your situation, then do it.  The power of positive thinking is amazing.  My surgeon and almost every single one of my nurses attributes my recovery to my attitude.

And remember, it’s okay to fall apart sometimes. You’re allowed to feel overwhelmed and despair and pain.  Just don’t let it consume you.  It’s okay to scream in your head, or into a pillow, “Why me?!?!”  Allow yourself to grieve.  Especially if the reason you’re reading this blog is because you’re an ostomy patient.  You have literally lost a part of yourself.  It is okay to grieve for that loss.  Just don’t let it consume you and drag you down all the time.

And always remember, you are not alone.

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How it started

So, I’ve decided to just dive right into how this happened.  For over a year, I had been dealing with gut wrenching pain that would drive me to tears.  Due to a combination of my ignorance about FMLA, my stubbornness about going to the doctor, and my company’s attendance policy, I did not go to the doctor about my problems.  I would have bloody diarrhea for about a month and it would go away.  I would lose a bit of weight, but never really thought much about it.  I didn’t recognize the  warning signs that something serious was going on.

Among the diarrhea, I had decreased appetite (because of the pain), my hair had started to thin and get dried out and brittle, weight fluctuated more than is normal, and I was pretty anemic.  That started probably around February of 2013.  It wasn’t until March of 2014 that I went through a pretty bad break up and was stressed at work and had been taking a few too many Advil and Aleve for back pain, that the stress finally pushed me so far I ended up in the ER.

I had been having the bloody diarrhea for just over two months.  I could barely get through my days because I was hardly eating.  I was losing a lot of weight, but when I started throwing up on an empty stomach, I realized something else was wrong.  I was already on attendance probation because I had been sick earlier in the year, so I was afraid to leave work early to go to the doctor.  By that time I’d already had some bad dizzy spells and then the vomiting.  The head of my department was useless as all he said to me was, “You know what options you have available to you,” and went back to texting on his phone.

I really didn’t know what options I had available to me.  I went back to my desk, afraid and disheartened.  I didn’t know what to do.  The supervisor sitting next to me had come back from a meeting, saw how bad I looked and suggested I apply for FMLA, especially since I looked bad enough for her to suggest the ER.  I called the numbers she provided (she had an FMLA case open) and found out that I would qualify.  I immediately left work and drove myself to the ER.  Only to find out later, I shouldn’t have driven myself.  They found I was severely dehydrated and there was clearly something going on with my gut that was not right.

I was kept over night, which turned into a week.  My mother was terrified that first night, because of how clammy my skin was, how ashen my face looked and how little energy I had.  After a few days of IV therapy and some hospital food I was forced to eat, the color started to return and my energy started to increase.  I had a colonoscopy after a few days and they discovered many ulcers in my colon.  Turns out, I had ulcerative colitis.  The bad news was, it wasn’t going away, ever.  The good news was, with medication, I could keep it under control.  So, they got me started on a medication, got me to the point where I could go away and put me on steroids to help fight down the flare up I had.

Unfortunately, I had a reaction to the medication that caused me to feel like I was having a heart attack.  After putting off the symptoms of UC until I was in the ER, I decided not to mess with this and went back to the ER.  I wasn’t having a heart attack, but I was having an allergic reaction to a medication almost no one has an allergic reaction to.  Yes, I am that kind of special butterfly.

So, after another week in the hospital (the cardiac section this time), they determine I’m okay, just need a different medication and send me home.  After much discussion with my insurance company, they accept that I can’t take the meds I’m allergic to, and accept the new medication.

This post won’t go into details about what UC is or my day to day bits.  This is simply this overview of how I got to surgery.  So we’ll skip over most of 2014.  I missed over half my scheduled shift for the year, due to flare ups, while we waited for the steroids and therapy meds to level out.  By December, I had one last flare up and then it seemed everything was normal.  Or as normal as I could be.  Unfortunately, that last flare up caused me to end up on attendance probation at work, because I had used up all the FMLA time I had available.  I missed one more day and ended up getting fired, losing my insurance.

I’m not sure why I didn’t apply for the Oregon Health Plan at that point, but I didn’t.  I couldn’t afford the medication that was over $500 a month and went without therapy meds for just over 6 months without a flare up.  We thought the stress of my previous job was what was causing the problems.  Then another flare up hit me, hard.  By then I had was on OHP so I tried to go the same route as before, therapy meds and steroids.  Unfortunately, when I went in to see if the meds were doing any good, I was barely able to walk, due to severe dehydration and physical exhaustion.  I wasn’t allowed to go to work that day, and my doctor told me I could either drive home (yes, he laughed when he said that) and try aggressive fluid therapy, or I could check myself in to the hospital (which was across the parking lot).  I opted for the hospital.

I am going to cut this post off here.  The next part of this story is a story all on its own.  And you probably need to rest your eyes before continuing.