A friend recently asked if I really did not miss my colon? I don’t, I told him.
It’s true; I do not miss it but it took me awhile to get to this point of acceptance. In the beginning I felt a huge sense of loss. In fact, I think I actually grieved the loss of my colon and rectum. I’ll tell you about all the reasons why I do not miss having a large intestine but first let me explain how I got to this point.
From This Point On Your Life Will Be Changed Forever
It might sound strange to mourn for the loss of my large intestine but losing an organ is kind of a big deal. From that point forward life will change forever and a piece of you will be missing. A patient may isolate themselves and feel angry, sad, or depressed. It’s normal to go through a number of other emotions and behaviors too before reaching acceptance.
Perhaps you have heard of the stages of grief that were created to help people cope with their response to loss. We typically hear of these stages after the death of a loved one, but loss can also include other major life changes. Things like divorce, losing a job, the death of a pet… the loss of an organ. They all can trigger grief. Everyone experiences loss in their own unique way but there are a lot of emotions that most people typically have.
The stages of grief were designed to help a person make sense of the emotions they are experiencing while they cope with loss. You may not experience all of the stages or follow them in a specific order or timeline.
What You May Be Feeling After Surgery
There are a few models of the stages of grief that have some variation. The one below includes 7 stages that are meant to be used as a guideline for coping with loss. I used the seven stages below and related them to major surgery and the removal of an organ.
You might deny that this surgery is even happening to you. Denial and shock help protect us from dealing with too much intensity all at once; denial is a defense mechanism. In this stage the world might seem meaningless and overwhelming. Life doesn’t make sense and you might wonder how you are going to go on with this new body that looks and/or works different than it did before. We may go numb to our feelings which should not be confused with lack of caring.
MY EXPERIENCE
At first I was numb to the whole thing and I wasn’t really feeling what was going on. I had my surgeries when I didn’t know anyone online or in real life with IBD, let alone someone who had their entire colon and rectum removed and lived with a J-pouch. I was just numb to all of this and went through the motions robotically because what else could I do? The numbness and denial helped me get through my surgeries but eventually I was going to have to deal with what was happening.
Eventually the shock and numbness wears off and you might start feeling intense emotional pain over the loss. Guilt may arise if you start thinking about what you could have done differently to prevent needing the surgery.
MY EXPERIENCE
I actually didn’t experience much emotional pain until much later. I seemed to go from denial and numbness into the anger and bargaining stage. My emotional pain came months after my surgeries when my physical health wasn’t as severe anymore. This is when the emotional pain showed up and kind of hit me out of nowhere when I had already gotten back to (my new) life.
There are a lot of emotions that fall under anger and anger is the one we are most used to managing. You might lash out at the people around you and say things that you don’t mean. In this stage you might blame another person, like your doctor, for not preventing this from happening to you. Anger can be a strange thing and you may become angry with anyone and everyone for anything. The friend who didn’t visit you in the hospital, the expression on your husbands face, they gave you green jello instead of orange jello, the tone of voice your mom just said good night in. Our emotions are coming out in anger when in actuality we just don’t know how to handle what is really going on. Religious people might become angry with God and wonder why he allowed this to happen to you. In the bargaining stage you people start making deals. Please God, if you make me healthy I will devote my life to helping others, etc. In this stage you might also become preoccupied with ways that things could have gone better.
MY EXPERIENCE
I experienced anger in a major way. I was angry! So, SO, very angry. I was mad that this had become my life, that I was sick, that this had happened to me. All of my fear, lonliness, etc. came out in anger and I took it out on the people closest to me. I fought every night with my significant other and was a nightmare to be around. So much so that my Mom told me she wasn’t going to visit me anymore at the hospital until I learned how to treat her right. I wasn’t actually angry about the things I was yelling about; I just felt so angry inside that all of these things were happening to me. Most of all I was just scared. I did think about the ‘what if’s’ often and wondered if I had done anything differently or if my circumstances were different if my surgeries could have been prevented.
I felt a lot of feelings of, “Why me?, I’m a good person so why am I sick?”
I wasn't actually angry about the things I was yelling about, I just felt so angry inside that all of these things were happening to me. Most of all I was just scared. I did think about the 'what if’s' often and wondered if I had done anything differently or if my circumstances were different if my surgeries could have been prevented.
In this stage you may start feeling the loss on a deeper level as you reflect. You might withdraw from life and isolate yourself on purpose. Depression may occur just when others are telling you that you should be over this and try to talk to you about moving on. A long period of sad reflection is not abnormal. It is important that you allow yourself time to feel these things and that the people around you understand that you shouldn’t be talked out of it or forced to “think positive.”
MY EXPERIENCE
I experienced a severe depression at one point. I had come into the hospital very sick and my surgeries were emergency surgeries so I had already been doing incredibly bad for a long time. Then after my surgeries I kept having complications that kept me in the hospital for six months and a lot of it was very scary and traumatic. I started to think
that things may never get better and that I didn’t want to go on like this. I became depressed over the surgeries and that I would have to live the rest of my life with this new body that was giving me so much trouble.
Part of grieving the loss of my colon was thinking about how I would never be a “normal” person ever again. My body was going to look and work differently from now on. There was no going back and everything felt very unfair. I was already isolated because I was in the hospital for 6 months and before that had been extremely sick the year leading up to my surgeries which resulted in me having to leave school and lose my job. After my surgeries I isolated myself even more by shutting down and pushing everyone away. There was a point that my depression over the events of the past year led me to think about wanting to die.
Eventually you begin to adjust to life without the organ and the depression lessens.
MY EXPERIENCE
It took a long time for me to get out of the hospital and get to a better place physically, but once I did things improved. Life without a colon was a huge adjustment at first but once my body healed and adjusted things became easier with each day. Life with a J-pouch eventually became my new normal and something I don’t even think about now. Better health was my upward turn and I started to realize that life was going to be OK afterall.
As your body becomes more functional your mind begins working again and you will start seeking realistic solutions to problems. Reconstructing your life and your self with your new body.
MY EXPERIENCE
With my particular surgeries I had to learn to live first with an ileostomy and then with a J-pouch. Both of these things came with their own set of challenges that I had to learn to work with. During this stage I was able to accept things a bit more and look for realistic solutions to problems. How do I live the best life possible in this particular situation? Where my solutions were not realistic in the beginning – “I would rather die than live like this!” I eventually had to seek realistic solutions to my problems – “What can I do to stop my ostomy output from being so frequent and liquidy so that I can sleep more than an hour at a time?”
Acceptance is often mistaken for being OK with what has happened. A lot of people will never feel OK with having to go through major surgery and losing an organ and certainly they won’t be happy about it, but that isn’t what acceptance means. Acceptance is acknowledging that this is your new reality and doing the best with it. It is realizing that you can never return to the YOU that existed before surgery. You might not like this reality or be OK with it but eventually you accept it. We learn to live with it because it is the new norm with which we must learn to live.
Acceptance is often mistaken for being OK with what has happened to you but that isn't it. Acceptance is acknowledging that this is your new reality and then doing your best with it
MY EXPERIENCE
I hate quotes but there really is something to that time heals all things business. There came a point where my new body and how it worked became my new normal. My experience was atypical and because of that it took much longer than the average patient to heal from my J-pouch surgeries and return to life. Once things did get better I realized that life without my colon was a great thing. It’s not perfect and since I still have disease that affects my small bowel and other areas of my body it’s never easy, but it is better than living with my diseased colon that stole so much from me.
Is It Normal to Experience This Sense of Loss After Surgery?
Is it normal to grieve the loss of an organ? I think so. Many of these surgeries are major operations and usually result because of a severe medical illness or an emergency. It’s an odd feeling to have a part of your body taken from you and in a way I didn’t feel like a whole person anymore. You might not go through all of the stages above or experience them as intensely but almost everyone who has to have an organ removed is going to experience some sense of loss and have to adjust to a new normal.
Reasons I Don't Miss My Colon
- No more colonoscopies! No more colonoscopies means no more bowel prep for colonoscopies. I do get my J-pouch scoped but the prep is much easier (usually 24 hours of liquid diet) and most of the time they don't require me to do prep at all.
- There are a lot of Sara’s in the world but not many can distinguish themselves by saying they are the Sara without a rectum. It’s fun youz guys!
- My colon was a diseased mess. My surgery was emergency because of how bad it was. I’d rather be alive without my colon than have gone down with it.
- I am not a prisoner to the bathroom any longer. My large intestine was so inflamed that me and my bathroom got to know each other very well. I was going to the bathroom on average 15-30 times per day. One time I counted 52 times but most days I didn’t count. Not to mention I was losing a lot of blood and the pain was unbearable.
- No more urgency (unless in a flare-up because I have Crohn’s disease) which means a huge drop in my anxiety and constant panic about what could go wrong. I don’t have to think about where every bathroom is located at all times and how quick I can get to it. I isolate myself less and didn't even realize how much control IBD had over me until I had my surgeries and realized what a slave to it I was.
- My quality of life improved tremendously. I was not living when I had my colon. I was isolating myself because of the accidents and the fear I lived with because of how often and urgent I needed the bathroom. I wasn’t able to eat much and my weight dropped severely low. I had lost so much blood I required transfusions and with such low levels I was extremely fatigued. I had to quit school, I lost my job, and I was bed ridden on high doses of steroids. I was not able to do anything I enjoyed and my relationships suffered. I pretty much had little quality of life. Now I get to live again and not just exist!
Sara
