On my journey, single and unaware of what I'm about to face. They've taken my gallbladder out when I was 17. This secret pain that is affecting my body has now taken over my stomach area. Still no answers, still in pain, they blamed my birth control. Why do I have this pain? It is not every day but enough to knock me to the ground and nothing will help. Long story short I moved to Kingston where I was diagnosed with Crohn's and UC. Finally, my answers to all those questions, I thought. So I didn't get any further in Kingston, so I moved back to Alberta, got my first specialist Noel Perkins, went to him on a regular basis, but just could not realize what is actually happening to me. I begged my specialist, but he kept telling me the tests don't lie; you have a mild case of this disease. Looking back i wonder why this demon is coming to life in my guts. I've already tried Tylenol with codeine just to find out that I'm allergic to both. Wow... sick of the pain that would increased because I was allergic to it. Night after night, not knowing what's going on. I barely made it to the year 2000. That was the year it started to hit me hard. I have always been tiny but this went to extreme, decided to take a holiday with my mother and sister. Well there we're good days, days I was fatigued, thank goodness only two days in a lot of pain. For so long I wondered what this monster was and how do you fight something that is unknown for all these decades?I started losing weight, enough that by the end of 2003 I was 78 lbs, sick, cold all the time, no circulation, no appetite, sleep was rare, mental breakdown. As I looked in the mirror at myself, I started to cry. Why is this happening to me? Why do I get to carry this burden?It was the beginning of 2004, one night before bed; it was the night that my struggle really began. I went to bed only to be so cold, that I went and hopped into the hot bath to warm up. After getting my body warm again I went back to bed. Not even five minutes later, I am freezing again. Woke my husband at the time and off to the hospital we went. As we pulled to the front of the entrance of the Black Diamond hospital, I was unable to walk into the hospital on my own, so my husband went and got a wheelchair. I remember waiting in the ER and finally getting into bed; I was in so much pain I could hardly move. I remember asking for something for the pain, the nurse says sorry have to see a doctor first. That took at least another 45 minutes. Doctor takes an x-ray of my stomach area and couldn't believe how much damage my guts printed out. The surgeon told me my toxins are rewashing back into my bowels and stomach area. When the doctor took the X-ray he was baffled at what she was seeing. I'm finally going to get relief from this pain; someone is going to believe me. For so long, nobody did; they said it was all in my head.
I ended up in an ambulance to the Rocky View Hospital in Calgary. I knew this would be a battle, I had to face and had to win; my poor body was tired fatigued and hanging on by a thread. Spent the next two weeks with a tip line, so I can gain the weight because you have to be a hundred pounds to have surgery or you will not make it. Finally made a hundred pounds, actually 98 but they said close enough. Wow, second surgery in my life, one of the scariest moments of my life.
My mother was there for me right until they wheeled me into the operating room; we talked and said a prayer. I didn't want to, I was scared, I didn't know if I would make it, didn't want to close my eyes; still have the fear to this day.
I woke up after surgery hoping I can go back to sleep; so much pain and I feel worse than ever before. I looked at my mother and she said the same thing; nothing's working, not even surgery. I feel the pressure of the unknown, still that they didn't get it all. Nothing felt right; why are you doing this to me? Why do I deserve this hell?My surgeon came in and explained things to me, how much my guts were screwed up. I thought to myself, wow, Crohn's and ulcerative colitis, you're really doing a number on me. I found out I had a new specialist. I couldn't handle being in the hospital because once again they didn't solve the mystery that still lingers in my gut. I started to see my new specialist complaining about the same pains but he kept telling me my markers were low. I told him there was something else going on. My specialist asked, what do I want from him? I literally told him either put me in the hospital or a pine box, I am back down to 78 lbs with no answers again. So, the struggle keeps going through 2004 to 2007.
August 2004 I went into the ER and waited for 7 to 8 hours in pain. Finally getting admitted I spent the night in the ER at the Foothills Hospital in Calgary. The next morning my specialist came and saw me. I got taken out of the ER to be put in a wing where they were painting until I got a bed in the main hospital. Next step is a feeding tube. Some reason why my food is not absorbing. Wow, talk about being homebound, 23 hours a day to start, I was stuck to an IV of liquid food. The nightmare, I spent for almost 4 years with a feeding tube, had to sleep sitting up because if you lie flat you can choke yourself to death. Great to know, not so great on the sleep. Cleaning bags, sterilizing products. The few times I went out around in Calgary or Black Diamond (where I lived) just to have human stare at me and asked me a thousand questions. Why do I have a tube coming out of my nose? You don't know how embarrassing it is, or how strong you are until you face your inner demons while life throws so much at you. You have to know how to deal with the foreign enemies with the tools of knowledge and experience. How do you cope? What's the answers to all these questions? It's like you think you're on the right track and life throws you a curveball. Who has all the answers? Nobody does, but with the knowledge you acquire will help you succeed in the long run. In the next blog I go through the motions of life with the mystery still to be revealed, how I love to have all the answers.
Crohn's and UC Warrior since 1988