January of 2009 I got really sick, and was bleeding a lot, and having major pain. Problem was that each flare up I had, always started off just like a flu would- Fever, body aches, sick stomach etc. But I was bleeding. Why were they not helping me? I went to the doc 3 or 4 times, while I continued to work 40+ hours a week, as a chef/cook at a hotel. I was fading quickly, nothingstayed in me. Finally one morning in early May, I woke up and saw that I was bleeding heavily. It really scared me, so I phoned in sick to work and headed for the E.R. I told the nurse that I thought I had crohn’s disease. (I had been researching my symptoms). She smirked at me and said: " ya okay, we will see". I was given pain meds, blood work and was asked to please wait to see the GI on call. That was when I met my amazing G.I. doctor whom I am so lucky to have! He listened to me, and said that he was fairly certain that I had Inflammatory Bowel disease, either crohn’s disease or Ulcerative colitis. Later on that evening, I saw that same nurse again. She apologised to me and said: “I guess you were right”. Unfortunately, I was.
PICC line, TPN, IV steroids, pain meds, 6mp, and a total of a month long hospital stay. I did get our after two weeks, only to end up back in there two weeks later for another two weeks. Then came Remicade. It took a long time to work for me, but it did. It cleared up the bleeding ulcer’s in my colon. Unfortunately I had to stop taking it after 10 months, due to severe inflammatory arthritis that I had developed. A year and a half later, as I sit here and type this, I am still suffering with what they call “Crohn’s Arthritis.” My hands so painful and my fingers swell up like sausages. There have been days where my wrists and shoulders hurt so bad, I couldn’t pull up my own pants after using the restroom.
When Crohn’s Disease gets me down, all I have to do is count my blessings. I have an amazing and supportive family, A partner who loves me for who I am, and a roof over my head. There are so many other people all over the world who don’t have any of these things. I am blessed. Never ever give up hope, because without hope, we have nothing. We are never alone in this IBD fight, we have each other and its important to reach out. Reach out for support and also reach out to those who need support. You can make a difference in someone else’s life, just by sharing your story and this is my story so far. I would like to leave you with a little something that I wrote about 6 months or so after I was diagnosed, and I think we can all relate to this.
The Five Step Never Ending Roller Coaster of Chronic Illness
When I was first diagnosed with crohn’s disease I had to stay in the hospital for a few weeks. I spent hours and hours staring at the wall and thinking. I thought about the grieving process that is used to describe the steps that a person will go through after the death of a loved one. I started comparing the steps to what I was going through and it seemed to fit how and what I was feeling. The only difference is that they never seem to end, or even go in a particular order, and rather than grieving for a person, we are grieving our own health & wellness.
“I can go back to work, I’m fine.” I remember being in my hospital bed and my GP came to visit me one morning on my 2nd or 3rd day in there. The first thing I asked her was, “When can I go back to work?” Instead of answering my question, she told me just to concentrate on getting better. I really thought I’d be back there in a week or so. For months, I think i really thought this thing called Crohn's would all go away and never come back. Didn’t matter what i was told about it being "chronic" I would have my old life back and everything would be fine. To this day, I occasionally still have moments of denial and I’m sure I always will, but it has definitely gotten better.
I was and at times, I still am, so mad! not that my body is attacking me and not someone else, I don’t ask “why me”?! Its because i cant do the things i used to be able too. I’m mad that i can't make plans with my friends without disappointing them at least 50 percent of the time.\ I’m mad that my loved ones are constantly worried about me. I’m really mad that I’m letting my team down at work. Logically I know it is not my fault, but I still get angry at myself, as well as the hand that life has dealt me. I Know it could be a lot worse and I know I am lucky to have my arms and my legs amongst other things. Its just that being in pain and having no energy is one of the most annoying things to me. I want to…..but I just can’t because my body wont let me. This brings me to the next stage.….
I quite enjoy making deals with myself- “Its okay to eat that bowl of chilli because i picked out most of the beans and i will eat a piece of bread and that will soak up the bad stuff.” What? no it won't! I’m laughing out loud right now because of how ridiculous that is! I deserve this ice cream because I Haven’t had any for so long. While I may deserve it, it still makes me sick, and I know the outcome. I call it: “Eat Now, Pay Later” Once I told myself I was in remission because I had no pain for a few hours and actually had some energy, so it was okay to eat a few handful’s of popcorn. So silly, I know. Where is the step called GUILT? I think we need one of those….
Yes, I think we have all been there. I like to bargain with myself even more while I’m depressed. Well I have to lie on the couch and not move all day because I’m a sick person. When I’m feeling depressed my favourite thing to do, is stay in my pyjamas, no shower, no deodorant, messy hair. I watch TV for hours and drink way too much coffee. Sometimes I would go 3 days without a shower. Until my partner would politely say- “maybe you should change your shirt.” Then I would drag my sorry self to the shower. These days pass and I do feel better eventually. It’s a phase, just like the others.
Yes there have been many times i have told myself that it’s okay, no problem, I can handle this. Could be worse and I’m thankful that I only have Crohn's disease and not something worse. I tell myself that this disease is easy compared to what many other people have to deal with on a daily basis. I can move on, I can live my life and it will get better each day. God wouldn’t give me something that I could not handle. This is all very true, until I start the stupid process all over again!
I swear I go through every single one of these steps over and over and over again- every single day and it never ends. It feels like roller coaster that keeps on going and going and going.
The good news is, there are many positives in this. I know I am very thankful that I still have all of my body parts. I am also thankful that that I still have hope. Hope that I will be able to make it back to work one day soon, hope that I will get some energy to do the things I love. Hope, that we will one day soon find a cure for IBD. I also know that i don’t want my old life back. Only because this crappy disease has made me who i am today. I appreciate the little things in life and I try not to take things for granted (Like being able to eat). I know now who myreal friends are. My family and i talk even more now--i know its out of concern, but either way, its brought us closer together. I also have so much more faith in my relationship with my partner. He has totally amazed me, what he can put up with and handle and how sympathetic he is and how much he really takes care of me. I truly am blessed to have all of my family and friends, this life and this body.