I never mentioned on this blog but I am now the co admin of a facebook support page called The Crohns and Ulcerative Colitis Diaries: Living with IBD which has really helped me to stay more up to date on the latest research that is out there and also feel a little more connected to other patients in the community. I wasn’t planning on writing a post today but I know there are a lot of people who are dealing with the emotional side of IBD right now.
Two years ago tonight at around 1 in the morning, I was ready to give up. After having three major surgeries just in 2011 alone, being in the hospital at least five times (and it was only September) and winding up with a permanent ileostomy in the blink of an eye after spending so many years fighting it, I just had enough. I had no idea what more could be done to help me with all of the emotional and physical pain I was experiencing.
I was a little less than two months out of my last surgery at this point. I was barely sleeping and whenever I would fall asleep, I would have terrible nightmares that would make me feel like I was right back in the hospital. I actually felt like I was reliving so much of what I was going through when I would rest which I think is part of the reason subconsciously my body didn’t want me to fall asleep. I was petrified of eating and winding up in the hospital again so I was down to about 85 pounds. My migraines were unbearable which definitely didn’t help me feel any better. I just felt awful – physically, emotionally, in every single solitary way… I could no longer handle life.
I didn’t know what else to do. I had a wonderful family who was always there for me. I had a psychiatrist in my life. But none of it was changing the way I was feeling. I was guilty all of the time because of what my illness did to my family and how much they had to sacrifice for me. I was exhausted yet so frustrated because I could never sleep. I was anxious every single second of the day. I never felt at peace with anything because at least a few times a day my mind would flash back to being in the recovery room or parts of some extremely terrifying hospitalizations. I was starving but couldn’t bring myself to eat like I should because in my mind it was “eat a normal amount and go to the ER OR get by on just a little bit” which was a no brainer. I was in agony with my migraines but because the amount of pain medication I required was so exuberant, there was little I could do with that.
I felt trapped. I felt lost. Here I was with resources at my disposal to help me but I had absolutely no idea how to utilize them. I had no clue how continuing to talk to my therapist would change my situation or help me in any way. I had no idea how telling my parents what they already knew was going to change anything since all of this was out of our control.
All I knew was that I could no longer continue living and feeling such intense emotional pain the way I had been. I could no longer keep reliving so much trauma. I couldn’t keep looking at my stomach, scars, and ostomy without cringing. I stopped recognizing the person starring back at me in the mirror, even though that reflection looked different weekly.
So, very late that September night, after sitting in my car crying in an effort not to bother my parents anymore than I already had that day/week, I knew that I wanted to live but not like this. I took a leap of faith and thought that there had to be something else, or someone else, with the ability to help me.
I took out my cell phone and dialed 911. This was the first time I felt a sense of relief from being in an ambulance. The medic attempted to take blood from my hand; the one place I knew he had absolutely no chance. But I didn’t care. I didn’t fight. I just let him do whatever he wanted. I actually asked the police officer if I was going to be in trouble since I was sitting in the car without my license, and then proceeded to make sure he knew that I had no intention of driving. He smiled and told me not to worry about it.
I have always been the kind of person who was a little on the “goody goody” side. I never wanted to get in trouble. I never wanted to do anything wrong. I want to please people and make my parents proud. I want to feel like I am good enough and having ulcerative colitis has really hindered that. I think it is one of the things that continues to cause me so much internal anxiety. Being diagnosed with IBD has forced me to go against a lot of the things I would have done given my core personality. It is a huge struggle. I like routine, UC makes planning impossible. I want to succeed and being sick definitely affected that. I need to make my parents proud and some of the actions I have taken just to survive have left me feeling like maybe I don’t.
I wanted to share a little bit about this night with you all today because I want everyone who reads this blog or who comes in contact with me online (or in person) to know that I HAVE BEEN THERE. I understand this kind of intense emotional pain, where you see no end in sight and have lost all hope. I have been there where I have hit rock bottom and actually called for help because I did want to live.
Living with inflammatory bowel disease is devastating in so many ways. It affects every fiber of your being. It cuts you down to your very core. At times I felt like it was forcing my soul to die. The once positive, sunny person I used to be who loved life and looked forward to things – I couldn’t find her after being knocked down so many times. This disease has the capability of breaking you.
But I am still here today. I am in a completely different place than I was two years ago. There is hope even when you look at your life and wonder how you will ever escape from the hole. I am proof of that. You just have to know that whatever happens, you are not alone. There has been at least one other person who has gone through what you have (and probably many more.) And somehow, someway, they have made it through. It may seem hopeless right now but that doesn’t mean it will be like that forever. Things do change.
Filed under: Uncategorized Tagged: | anxiety, chronic illness, colostomy, crohns disease, emotional pain, health, hospital, IBD, ileostomy, inflammatory bowel disease, insomnia, mental-health, migraines, ostomy, pain, physical, post traumatic stress disorder, PTSD, surgery, trauma, ulcerative colitis