Reflecting back, there is one symptom that sticks out in my head. The constant pain, diarreah, vomitting, extreme weight loss, loss of hair and lack of energy were pretty bad, but there is a symptom that is far worse-GUILT!!! When I was diagnosed, my disease was out of control and surgery happened months later. At the time of surgery, I had 6 strictures. Strictures occur when your intestines continue to get inflamed and swell, scar tissue begins to build until your intestines are too closed off for anything to pass. When this happens, weight drops dramatically, pain is at an all time high and vomitting happens all day, every day, because food isn't able to pass through the body. Everytime I visited with friends, family or my ex-husband's family, I would get up in the middle of dinner, be sick and have to spend the rest of the evening in bed. I feared that they would think I was bulemic, but the truth is, I WAS bulemic, but not by choice, so hear me out... As soon as I would eat, the pain would immediately intensify and when the pain was at its peak, it caused me to throw up. I would eat and become petrified of what was to come, all the while beating myself up for even trying to eat (How dare I?) and so I would make myself throw up in an attempt to avoid the pain and another ER visit. Then lastly, my body was so used to throwing up that I would throw up for no reason at all other than my body doing what it had learned from my own actions. Vacations ruined, Holidays ruined, Fun days out, ruined.. I ruined everything and I was sure to let myself know this, every step of the way. I was burdening those around me and I knew it. Every day I was in the doctors office and what seemed like every night I was in the Emergency room. I was letting down the people I work with, because I was never there anymore. I let down my husband who didn't ask to be a part of this and I essentially let down everyone close to me, at least that is what I told myself. I was so very sick, that I would collapse down the stairs and my ex husband would have to pick me up and carry me back up and to the bathroom where I would be sick again. I was so weak that I couldn't hold my head up and he would have to hold my head up for me and then put me to bed. I still remember saying to him that if I ever got put in the hospital for a long time that I wanted him to take a lover on the side. This broke my heart to say these words to him, but I did mean it. I loved him and I wanted him to be happy! I couldn't bear the idea of him suffering forever bc of me. I wanted him to have someone to go on dates with and laugh with and to have intimacy and all the things that a young man should have... all the things that I didn't know if I could give to him any longer. I would beat myself up every step of the way, worrying only about how I am ruining things and affecting others. I still do this, but not as bad because I recognize and accept the truth now. What is beyond my control is not my fault and if people love and care for me, they will accept the disease as it is a part of me. What has made me take a look at my own guilt is what I have seen from others. I am very active in several online Crohns support groups. I see posts all the time that say, "Weekend cut short, I've spoiled it for everyone".
"Supposed to go on a date tonight but as usual, I'll be stuck in bed, alone"
"Why do I have to ruin every special family event, can't we have just one?"
I see statements like these all the time, so I know that the guilt isn't just my guilt. It is a part of the disease. This disease is so much more complex than most people can possibly fathom!! The physical aspects of Crohns Disease are horrendous but the hardest struggle with the disease, lies within our own mind.We are emersed in pain yet we have to push it down and keep a positive attitude so that we are not walking around biting people's heads off. Do you know how hard it is to be nice to people when you spent the 1st 3 hours of your day on the toilet, throwing up and having diarreah? When you are in so much pain that you not only want to pull your hair out but you actually pull your hair out? There are days where I would be tempted to sell my soul if it just meant 1 day of relief and I'm listening to you go on about some stranger who thinks that you are stuck up or your mad bc someone gave you a dirty look. Really? Personally, on my worst days, I want to slap you. I'll take a billion bad looks and tons of bad talk, just give me some damn relief!!! I refrain from the negative though and I put on the smile everyday, but it is hard, sometimes nearly impossible! I face a daily mental/physical battle just to survive.
My guilt even led me down a dark path and at the end of that road was a bottle of ambien. I took that ambien and I swallowed them. I ended up on life support and I pulled through. I just thank the Heavens that God was there with me that day in all of my weakness, pain, shame and guilt. He saved me and He has been restoring me ever since! He has led me here to all of you, to be a voice and a source of support and hopefully preventing someone from making the same mistake as I did. It's hard for me to say all of this out loud, (most people do not know this about me) and I truly didn't expect to say that when I sat down to write this, but I know the only way to reach others is to be completely open and vulnerable. I let my guilt lead me there! If you are a fellow crohnie, please stop blaming yourself!! Focus on overcoming the disease and be sure to let go of negative comments of others and appreciate the positive things people say to you! The guilt will grow until it turns into a monster and it will truly have you believing that the world would be a much better place without you in it. This isn't true. Every person in this world is loved by someone and there are people out there who would be heartbroken and lost without you!! My door is always open to those who need a friend and a shoulder to cry on!! Be strong and be encouraged!! Every day is a chance for change and growth, you just have to take the first step!!