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.