I Lost All Hope: My Darkest Days with Crohn’s Disease
It’s like it didn’t happen.
Like that girl laying in the hospital bed for six months… she wasn’t me.
Many of you have asked me how I stay so positive and where I get my optimistic attitude from. Many times I have had no idea how to answer this question. I can’t find the words to describe why I feel the way I do about life, but I think the answer to this question has to do with two things: experience and acceptance. In order to explain this let me take you back to my “dark days.”
The Downward Spiral
It happened so fast. One moment I was in my final semester of college and the next I was spending six months in the hospital.
I would make up little games in my head just to get through simple daily tasks. For instance walking from my dorm room to one of my classes across campus was such a difficult thing for me but if I could make it there without having an accident, or even just make it there, then I had won.
Just one foot in front of the other…
you’re halfway there now…
you can do it…
Just to walk across campus, with my backpack on my back, was like running a marathon because I had been losing so much blood and was so terribly weak and also underweight.
In a matter of about eight months I had stopped going to all but one of my classes and started to live a lie because not going to school made me feel like a loser. When I was asked about my day I made up stories about what happened because I didn’t want anyone to know the realities that I was facing behind closed doors. I held on by a thread for as long as I could trying to work, remain living on campus, and participate in my social life.
Hope
Eventually I became unable to do it anymore and I was out of a job, school, and a place to live but I still had some hope. My hope was lost when not long after that I was laying in a hospital bed day after day in what became month after month in the worst pain I had felt in my life.
How was it that things got so crazy so fast? My body had been cut open and I had part of my small intestine sticking out of my abdomen and stool was being collected in a bag that was attached to it. My once “perfect” tummy now had a huge scar.
The ‘dark days’ that I talk about happened during this time. Nothing was going the way it was supposed to go. When I had my ostomy I was plagued by terrible pain and wound up in emergency surgery to have adhesions cut that were strangling my small bowel and causing a blockage. I spiked a fever of 106F one day and started convulsing until I blacked out and woke up in the ICU a couple days later not being able to remember what happened. I was told I had an infection from my PICC line but I have no memory of being in the Intensive Care Unit. My weight was down to 90 pounds and I was still being fed intravenously because I couldn’t gain weight and was having trouble eating. When my ostomy was reversed I was given promises of a new life with a J-pouch but my J-pouch wasn’t working the way it should.
I Was Hopeless
All I could do was lay in that hospital bed in pain being angry at the world and wishing for the end of my life.
To put it bluntly I was scared. I was scared out of my mind. When doctors didn’t have an answer as to why things were going the way they were going for me I lost any bit of hope that I still had left. I just wanted to live a normal life but it didn’t seem possible at the time.
I became a mean and angry person because I was angry at the world. All I could do was lay in that hospital bed in pain being angry at the world and wishing for the end of my life. All I wanted was for my suffering to end and I didn’t care how that came. I just wanted a break. When I was released from the hospital life had moved 6 months ahead without me.
So there I was. My circle of friends were done with school and they were starting to get good jobs. They were buying their first homes and moving into a new season of life and I was not in the same place. I was picking up the pieces of my life and trying to make sense of everything that had happened to me.
During that time what I thought were close friends stopped being my friends; one of them told me later that it was too hard to see me like that so they stopped talking to me. The six month hospitalization destroyed my credit because I didn’t have health insurance throughout all of this and I had no money left.
I was crapping my pants.
Crapping my pants!
Every night. Do you know how scary that is (yeah, you probably do)? To wonder if you’re ever going to be able to have control over your bowels again. What went through my mind… how will I date someone? How will I sleep next to someone if I am always having accidents? How will anyone find me attractive? I had decided that I would have to isolate myself even more and that relationships would not be possible because of my health. Nothing seemed possible.
I was hopeless.
A New Attitide
And then something shifted and slowly things started to get better. I stopped throwing up everything I ate and began to gain weight. My body adjusted to my J-pouch and accidents at night were no longer an issue. With the return of my health my hair started to grow back thick and healthy again. I started to have days without pain, I found a job… life went on. When I was in the hospital there were people who came into my room who helped me fill out forms in order to help me get health insurance and I was finally approved for Medicaid.
I am a positive person today because I can remember the dark days. I look back at all that I went through back then and since I know that things got better I know that it is always possible, and most likely probable, for things to get better now. when things are going wrong I have hope.
I have grown to love my scar and love my body even more than before my surgeries.
If I need an ostomy again in the future I will be more prepared to handle it.
I have a voice now and I am able to talk about my struggles which has been very cathartic.
When I am hospitalized I can see a light at the end.
I have hope and I learned to accept things. It’s as simple as that.
Because of my struggles I am thankful for my disease. As silly as it sounds it made me into a better person. Having the best job, being perfect, doing all sorts of “amazing” things is no longer my priority. I am able to take a step back and appreciate the things that actually matter in life.
When I see people around me stressing over trivial things I laugh to myself because it’s like I now a little secret. I know that those things don’t matter and I feel lucky that I am able to LIVE life.
When I see people around me stressing over trivial things I laugh to myself because it's like I now a little secret. I know that those things don't matter and I feel lucky that I am able to LIVE life.
Thinking back it’s hard for me to remember the girl I used to be and it all feels like it was a dream. My days are so much brighter and I live life so much better. I hope that if you’re not at this point already that one day you get here too because it’s a good place to be.
Sara
