Shit Happens

My daughter is going to start pooping in a bag. There, I said it. I still don’t want to believe it, but if I say it enough maybe I will get my head around it. I need to. And fast. Tomorrow, Avery is scheduled for surgery to create an ileostomy. An ile-what?? Ileostomy. That’s right, they are going to cut a hole in Avery’s abdomen, pull her intestines to the outside, attach a bag, and she will poop in it. Yes, I am being blunt about it, but that is the way the news of the ileostomy was delivered to me, very nonchalant, like it’s normal for a five-year old to walk around with a poop bag strapped to her waist. I remember hearing her doctor say the word for the first time the night before she received her actual diagnosis during her last hospital stay in April. With the manometry test still in process, he said, “Well, we already know her colon is shot, now we just have to hope that it hasn’t completely affected the small intestines yet.” Her colon is shot? He said it very matter-of-fact, as though we had had this conversation before. We hadn’t. He then proceeded to tell us how Avery reminded him of another little girl whose symptoms were very similar to hers, and very casually mentioned that they have been successfully managing her pseudo-obstruction with an ileostomy that she has had for the last ten years.

That word sent a wave of panic that settled in the pit of my stomach. They say ignorance is bliss, and boy did I wish that I hadn’t spent the last couple of months researching pseudo-obstruction as my mind filled with images of other children I had seen photos of on my support group. I admit that as I would scroll past these images of kids with their ostomy bags I would think with relief thank god she’s not that bad. Now here I was hearing that word used in reference to my daughter. I must have nodded and smiled my way through the rest of that conversation, but really I couldn’t wait for the doctors to leave the room so I could process the information. I turned to Joe, panicked, expecting him to react the same. I looked at him sitting there so calm and shouted, “Do you know what that is?!?” I quickly explained and he said, “What’s the big deal?” Was I alone in thinking this was coming out of left field? Was I the only one to think this was an extreme measure to take? I spent the rest of that day inside my head trying to figure a way out of this. After I put Avery to bed, I went down the hall to call my mom. Finally, someone who agreed with my disbelief over this surgery. By the time I got back to the room, Joe looked sick and immediately said, “You’re right, we are not doing this surgery.” Apparently he had done a little research on his own and the images were as startling to him as they still are to me.

By the next day, it was confirmed that Avery did, in fact, have chronic colonic pseudo-obstructive motility disorder. We asked about other treatment options, coming up with our own suggestions that probably made no sense medically, but we were desperate for something, anything but an ileostomy. I simply refused to believe that this was the only thing that could help Avery, but after a couple more appointments with the motility team and then their surgeon, it was decided that the ileostomy was really her only course of treatment. At the same time, they thought it would be in her best interest to also add a gastrostomy tube (g-tube) for venting the stomach to help with her distention.

So that is where we stand today, with Avery scheduled for surgery to have an ileostomy and gastrostomy tube placed tomorrow. She was admitted today to undergo another bowel prep with an NG tube and the rectal irrigations to get her intestines cleaned out for surgery. Technically speaking, they are going to create a hole for a tube to reach from the stomach to the outside of her body to left the air escape (gastrostomy/g-tube). Then they are going to disconnect her large intestines (colon) from the end of the small intestines (ileum) and create a hole to bring the ileum to the surface of her abdomen where her waste will now leave her body. They are leaving her colon inside her body with the hope that someday she may be able to have it reversed.

I started seeing a therapist immediately after finding out about the surgery, and she pointed out that I am very good at reciting the facts when she asks about the process and procedures. I know that she was implying that I am not really dealing with the emotion of all of this, and that I hide behind my medical background to avoid the feelings that may come up when talking about the surgery. She’s right. I have been trying to distract myself from really dealing with it since the beginning. We found out about the surgery on May 2 and since then I have cleaned out every cabinet, drawer and closet in the house. The basement has been cleared out. I found out about a subdivision garage sale last minute about two weeks ago and thought “Sure, now seems like a good time for that.” I have made lists of ridiculous things that could definitely be put off but that I have insisted must be done before the surgery. Starting this blog was included on the list. It doesn’t take Freud to tell me that of course I am avoiding my feelings.

The truth is that I have nothing but feelings about all of this. One minute I am sad and guilty and the next minute a different feeling completely consumes me as my mind darts from one thought to another.

I am so angry. Angry that after having finally found an answer for her pain, the only option is this life-altering surgery. Angry that this will steal more joy and light from a girl who has already had so much taken from her. Angry that we can either sit here and watch her suffer or we have to allow the doctors to cut her open and dismantle her GI tract. What kind of choice is that?

I am scared. Scared for her reaction. Scared that she might withdraw further and I won’t be able to pull her out of it. Scared that we may be opening ourselves up to a whole new world of medical complications dealing with the ileostomy. And worse, scared that after all of this, it won’t work.

I am sad. Sad really doesn’t begin to describe the depth of my heartache. And it does, literally, ache. I can’t even allow myself to sit with that emotion for too long, because if I let myself really feel it, it will break me.

I feel guilty. Guilty that I can’t really protect her from this. Guilty as I watch her when she is happy, blissfully unaware of what is about to happen to her. Guilty that she doesn’t have a say in such a huge decision about her own body.

Can I just say I am tired? Really tired. I don’t think tired is an emotion, but it feels like one right now. I feel like I have been running a marathon for the last couple of years and now find myself back at the starting line. I am depleted. How can they expect me to be strong when I am so worn down already? Just thinking about the amount of work it is going to take to deal with this, both physically and emotionally, is incredibly draining.

I am worried. Worried about the physical part of taking care of her new body. The first time I saw a stoma, which is the medical term for the part of her intestines that will be protruding from her abdomen, I felt lightheaded and breathless and had to look away. The stoma and skin surrounding it is red and raw and never looks healed. I don’t know how I will be able to handle changing her bag without getting sick. I am desperately trying to become more comfortable with the physical aspect of the ileostomy, because I am the one Avery is going to look to. She will be watching my face as I look at her new body and she will form her own feelings about herself based on my reaction to it. That is a lot of pressure.

There is such a disconnect between me knowing what is best for her medically, and fearing that what will “fix” her body, will break her spirit. Every time we leave the hospital, the tubes and IVs come out and we exit the same way we came in. What will Avery think when we leave the hospital this time and those things don’t come out? I think about the first time she will realize that this is permanent and it terrifies me. How will I be able to help her cope when it will break me to see the pain of that realization in her eyes?

Last night, she laid on my chest as I rubbed her back before bed, something we have done countless times. This time it occurred to me that these moments are numbered. We won’t be able to lay chest to chest after surgery with her bag and tube sticking out. I carry her constantly right now, but I am unsure of how I will be able to hold her without hurting her after surgery. I look at her large, round tummy as I rub it at night when she is in pain and as much as I hate it for what its done to her, it is her. All her. After surgery, there will be “extra parts” that don’t really belong to her body. Her now smooth, intact stomach will soon become unrecognizable to her and to me.

I think about her future and I wonder how she will feel about her body and my decision to allow the surgery. Will she hate me? Or worse, will she hate herself?

I know that we will get through this. We don’t really have a choice. I just desperately want to do it in a way that won’t cause her more damage. I want to be her support and her cheerleader. I want to find the energy to be whatever she needs, for however long it takes. I want to accept this bag as our savior and not our enemy. And I want Avery to do the same.