The truths I ignore

I had an appointment with my surgeon today. I need to have my rectum and some colon removed. It no longer has function and I essentially have a mast cell twist on diversion colitis. This has been coming for a while.

We talked about what the surgery entailed, healing time, mast cell precautions and how to suppress anaphylaxis in the days after the operation. Never once did he remind me that removing this tissue means that I will never be able to reverse my ostomy. He knew I knew. I was glad he didn’t say it.

“I would never reverse my ostomy,” I told his Chief Resident during the appointment. And that’s true. I never would. I would never want to again be in the position I was before I got it, where my life was one long GI nightmare of amotility.

I am not often surprised by my doctors, but today was one of those rare occasions. Everything that needs to be done can’t be done at once without the likelihood of complications. This means I will get the majority done during one surgery, after which I will be in the hospital for about a week, and will recover at home for 4-6 weeks. Then I will likely need a second surgery.

We set a rough date, agreed to meet again three weeks before surgery to go over everything again, and I left. I hurried down the hall past the brown wooden doors and turned quickly into a single stall bathroom. I locked the door and put my hands over my face just as the tears started, hot against my reddening cheeks.

I would never reverse my ostomy because I would not be able to function without it. I mean it every time I say it. But knowing logically that there is no reason to keep the rectum and excluded colon doesn’t make me feel less robbed. It was easy to pretend that I wouldn’t always need it, even if I only pretended with myself.  I just slammed the door on my last tiny chance at normalcy.

The reality of having an ostomy for the rest of my life is something I have avoided dealing with emotionally for quite some time.  I talk about it a lot, without embarrassment, but it sort of feels like I’m just trying to make myself feel better about this decision two years later.

There are some truths I have to ignore to survive. I have to mislead myself to be able to love the world again every morning.

 

6 Responses

  1. k January 16, 2015 / 1:41 am

    Hey Lisa,

    I just read your story here. My heart goes out to you (whatever that means…its the only way I know how to express it I guess).

    You must feel scared and grieving a loss takes time. This is loss, no doubt about it but you have a strength about you that comes through your story.

    Knowing how to make ourselves feel better is a way of surviving I think. I think often we do have to pretend for a little while until the pretending starts to feel more real and natural and accepting.

    I wish you didn’t have to go through this…I really do…

    Thank you for sharing and being open and honest. It is so hard for some people to be honest and it means a lot to hear a real honest story, not something pretentious on social media…

    Thank you….thank you

    I would love to chat with you if you would like a friend to talk with

    • Lisa Klimas January 16, 2015 / 11:07 pm

      Thank you, I appreciate your kind words. I can use all the friends I can get. Feel free to find me on Facebook in the MastAttack group.

  2. Pam January 16, 2015 / 7:03 am

    My dear Lisa, my heart is hurting for you and grieving with you. I saw my mom grieve and I cried with her as I did with you as I read. You, like her, are a survivor, and to survive you will need to talk about your grief and loss, which you are and will continue with your loved ones. You will go on helping others, as she did, who are going through the same loss. Thank you for sharing your grief, your heart and your life. You are precious. As always, you are in my prayers.

  3. Camille January 16, 2015 / 10:29 pm

    I understand completely. I’ve had to slam the door on chances at normalcy several times myself. I usually end up calling my sister at some point sobbing saying I knew this is what it meant but it still hit me today when….. I’m sorry you have to face that one. However I’m glad you are alive, able to work some, write your amazing blog, and to continue inspiring us day after day. It is ok to not have the brave face every day. It is ok to have your moments of reality. Thank you for continuing to fight and share your story so we know we all aren’t alone in our fight.

  4. Echota Keller January 17, 2015 / 12:31 am

    I just want you to know that I feel your grief and pain in this, and I so get the needing to lie to one’s self about some things to keep going on. And then when it hits you, the reality of things…man, does it hit you. And it hurts. How can you not grieve and cry and rally against the circumstances for being here? I so get it, and I just want you to know you are heard and all of this is valid. I wish I had more to offer – resources, healthy coping mechanisms, etc. But I’m in the same boat, just trying to figure it out, trying to find some light in this dark tunnel of chronic illness.

    I’ve been reading your blog lately as I begin this mast cell journey, and I am SO grateful for this resource. I don’t even know how you manage it, but I am so grateful for it. Thank you. I wish you as smooth a journey as is possible in your surgeries. I know how insane this is, and I just want you to know there are people out here rooting for you.

  5. Ladybug January 17, 2015 / 11:12 pm

    Dear Lisa,

    I sit here in the dark of the night typing to you under the glow of my PC screen. I cannot sleep nor turn off my mind from thinking about so many issues in my life . . . this illness . . . how we are all affected in both similar and in different ways . . .

    Your flood of tears were probably long overdue and I am thankful that you were able to release them. I think you face your fears and situation much better than other people, and probably much better than what you give yourself credit for.

    You are not defeated . . . You are not a loser . . . You are not a victim . . . You are not without worth. You have great value! You have unique purpose! You have GREAT importance! You are amazing! You are filled with even more remarkable and beautiful qualities that you have not even touched upon, Lisa.

    Throughout your journey, you most likely have displayed times of optimism, times of hope, times of encouragemnet, but most of all—courage. You are a teacher. You are an influencer. You are a leader. You have succeeded to embrace each new day—you are conquering challenges. You are a Helen Keller and Joan of Arc rolled up into one. You are a leader in this health crusade, precious one. I pray that you will realize just how special and important you are. I pray, too, that you will be blessed with some very unique, profound, and gentle days . . .

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