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

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.

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