Friday, March 30, 2012

For all you other IBD brothas and sistas!

This post is coming one day earlier than I had anticipated but, just like life, sometimes we can't predict our most inspired moments. Over the next few days, I will have two major UC-related moments. Tomorrow, March 31st, will be my 1-year anniversary of my pouch's creation. It was a rough year, but I made it!On Monday, I will have my second pouchoscopy. The first was done just before my takedown surgery to ensure that my pouch was ready to be used. A pouchoscopy is essentially a colonoscopy of the pouch. Since I no longer have a colon, the camera will look for leaks, poylps, fistulas, and any other issues in this man made, substatutive organ. I will have this procedure annually.

I guess the primary reason I am writing today, though, is not celebratory, nor is it to provide informative updates on my condition. Today also marks my eighth month at my new job, an environment and position that I am just beginning to become comfortable in. It hasn't been easy. At this time last year I was forced to leave my position at Morgan Stanley as I became too ill to work and was about to undergo the most trying period of my life; undergoing two major surgeries (that came with unexpected and serious complications and, then, a third massive surgery on my intestines). I had friends at Morgan Stanley. Friends that provided emotional support in the workplace, a locale where I spent the majority of my time. And let me tell you, I needed that.

Starting this new job at the time I started it has felt like an emotional marathon, requiring constant efforts at making friends and offering niceties when, in reality, I have mostly felt unstable, both physically and emotionally. I have struggled to be both cautiously open and  gingerly discreet about my chronic medical condition. Of course, I had to explain why I was abruptly absent for three weeks shortly after taking the job (an acute onset of a complete bowel blockage, requiring extensive surgery and a nearly two-week hospitalization). I had to answer questions about how I had lost fifteen pounds in three weeks, fend off inquiries as to why I don't want to try the salad, and have been required to offer explanations of frequent requests to leave early to attend doctor's appointments. And that is all fine and good. But there has been one thing that has really been bugging me. Actually, it's been eating away at me like a preying mantis feeding on an innocent bumble bee. Disturbingly insidious.

The problem is, talking about your digestive tract is taboo. How can I explain my sudden absences, my drastic weight loss, my inability to help lift heavy boxes, or eat most of the company-supplied lunches? How do I deflect questioning without seeming elusive or feeling dishonest with myself? And, most importantly, how can I get the word out that Crohn's disease and Ulcerative Colitis can be two of the most debilitating diseases on the illness spectrum when it is too f&*king taboo to even mention indirectly? When people say to me, "You had to have your large intestine removed just because of colitis?" I am not surprised. We, IBD patients, are not allowed to talk about being sick without being shunned, ostracized and detested.

I am excited about my pouchoscopy on Monday. I am excited because I have been undergoing annual and bi-annual colonoscopies since I was a 17 year-old child. This is the first year that I will not have to fast. I will not have to drink that disgusting concotion that tastes worse than dog shit (oh, and  yes, UC patients are now being asked to to swallow worm eggs from other people's shit to assuage their symptoms). But let's not talk about that, because even though this somewhat disgusting practice might offer life-changing results for millions of people across the globe, we wouldn't want to talk about shit, now would we?

So, now that I am finally feeling comfortable with some of my co-workers, I said to the woman who sits beside me, "I am so excited for my three-day weekend. Even though I have to have this procedure on Monday, I am so glad that I don't need to fast! See there are good things about not having a colon!" She shot daggers at me with her eyes and said, "Please don't talk about that around me." Now, this was the first time that I dared to mention something about my medical condition in front of her since an incident in December, when, during my first week back at work after my surgery I said to her, "I think I may need to leave early as I am having trouble sitting in my chair. My incision is not quite healed." She had given me the same intimidating glare and the exact same verbal response as she did today.

Obviously, my attempts at being more open and honest about a physically and emotionally debilitating illness that has consumed almost every aspect of my life for the past ten years have been met with insensitivity and even scorn. And today I'm feeling fed up. Do cancer patients get treated so indignantly if they talk about nausea from their chemotherapy? Do masectomy patients get ridiculed because they are flat-chested? Ulcerative Colitis and Crohn's disease sufferers have an added challenge put on their plate. How do we stay emotionally stable when people diminish and vulgarize our disease?

My name is Katie Pearce. I have no colon. I have no rectum. And feces, shit, poop, crap, bowel-movements, and excrement are a major factor in my day-to-day life. But, please, keep in mind, I do have feelings.

15 comments:

  1. Thanks for the blog. I'm a woman in nyc too. Step 3 take down in two months. Very thankful for this surgery. Take care.

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  2. btw, your co-worker is just a sh*&t, and you definitely don't owe her an explanation. I saw that pic in bora bora you prob just look better than her in a bathing suit.

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  3. Hahaha! Aw, thanks Chelsea! People just suck sometimes. Good luck with your Step 3! These surgeries are life-changing (and all for the better!).

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  4. Happy anniversary. You made it. I know you tell me to be succinct, so I will try. I am so proud of you and the way you have handled yourself over the last ten years, especially the last year. You are much loved, admired and respected for the person you are. Don't sweat the small stuff. Your future is bright and, of course, you have a lot to be thankful about. Dad

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  5. I can't say I relate to the actual IBD disease, but am having surgery to remove most of my colon for chronic IBS and avoid the colon cancer that took my grandmother when my mom was just 7. I am also in remission from Hepatitis C (which I can blame myself for making ONE bad decision when I was 15 yrs old and contracted it) I underwent a brutal year of chemo-like treatment to rid the Hep C which only made the digestive problems I've suffered from since a child ten times as bad.
    These are issues that make me who I am, and I KNOW your pain of not being able to just BE. Noone wanted to listen to me cry about shitting on myself. In fact I had to leave a job because noone wanted to "catch" anything from me, and I was emotionally destroyed.
    It has taken me years to say to myself and others "if you don't like me AND my shit problems, I'm going to have to say that YOU are the ass and don't deserve to have ME in your life." You have a perspective and gratitude for life that many others will never know. If those folks ever come down with some disease God forbid, they just might remember shunning you and regret not having a shoulder like yours to lean on.
    Stay strong and know that you have inspired more people than you have grossed out!! =)

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  6. Thank you for the kind words, Olivia! It is so good to know that my blog helps other people. That means the world to me. I'm so sorry to hear you have been through all of that, but it sounds like you have an amazing attitude towards it all. I hope your surgery goes well, Olivia! Please reach out to me if you have any questions, and please tell me how it goes! Best, Katie

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  7. congrats on the anniversary (??) Good luck with the procedure~

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  8. Thank you Chris! The procedure went very well and I'm feeling very healthy :)

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  9. Hopefully you are feeling great. As for ignorant coworkers, I find just talking about and having it out there is the best way to deal. It is a part of your life. Why should YOU change and filter your reality bc people want to be in denial? No way. Like you stated in your blog, do cancer patients get shunned that way? Nope- they get to wear it like a badge of honor and have everyone celebrate their battle. Us IBD-ers are supposed to hide in our bathrooms in shame. Well, not this broad!!! Live your life out loud. It's the only one you've got!

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  10. Thanks for the message, mizlisa! You are absolutely right about everything you said and I hope more and more IBD patients can accept themselves for who they are and begin or continue to live their lives, as you said "out loud!" We have no reason to be ashamed!

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  11. Jennifer from VaJune 22, 2012 at 7:39 AM

    Thank you so much for your blog! It has been so helpful! My husband has UC and we will be meeting with a surgeon in a couple of weeks. He has tried all medications and remicade hasn't helped either. Hopefully this time next year he will be where you are today! On a sad note....my 17 year old daughter was just diagnosed with UC this week. I am praying medications can help her. Thank you again for your blog! And I had to chuckle about your co-worker-our dinner time conversations are all about how many times did you go today, was there a lot of blood, was there any stool, etc. LOL!!

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    1. Jennifer,

      Thanks for the message! Best of luck to your husband- I am sure he will be fine and if he goes through with the surgeries I am sure he will not regret it. It was the best decision I have ever made (maybe after marrying my husband!). I am so sorry to hear about your daughter. I was diagnosed at 17 and it is incredibly hard to be a teenager and live with UC. Please tell her to reach out to me if I can be of help in any way. I know exactly what she is going through and she is certainly not alone.

      PS I definitely know how those dinner-time conversations can be! My husband always remarks on how we talk about such things so non-chalantly. But, really, it's a good thing! These things need to not be so taboo!

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  12. Katie,

    My daughter Whitley was diagnosed with UC when she was 7, she is now 21. We have been on every medication available and this disease has almost taken her life 3 times. I have always been open about her disease, but public perception is that the worst thing about UC and Crohns is you have to go to the bathroom more. I can remember so many occassions as a child where she has been treated so mean by adults and children who didn't understand. I love CCFA and have been a active member since she was diagnosed but the commercials should show a person looking healthy and the graphic pictures of a removed diseased COLON!!!!! I look great on the outside, but heres how I feel inside!!!! I felt like she was given a life-long diagnoses of Cancer when she was 7. I get so upset that people don't understand, she suffers in silence and never complains because of the way she has been treated in the past. I want to THANK YOU for saying what I have always thought. I had a very rare Liver Cancer and had 70% of my Liver removed shortly after she was born, she has suffered far worse than I, and mine was no easy plight but hers has been worse!!!! CONGRATS on your anniversary!!!!!
    Charlina...Whitley's Mom:))

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  13. Charlina,

    I am so sorry it took so long for me to get back to you, things have been hectic (as perhaps you have seen from my latest blog). I am so sorry to hear about your daughter's struggles with UC, and I know exactly what you are talking about. The reasons that you cite above (ie people thinking IBD is just using the bathroom more) are the number one reason why I started this blog. These diseases are so taboo, as they shouldn't be, and people suffer privately and alone out of embarrassment and shame. This should not be the case, and the word needs to get out about how truly debilitating these diseases can be. While I thankfully did not have to suffer with this disease as a young child and I can't even imagine what that would be like, I certainly did not have the coping skills to live confidently and accept my disease when I was diagnosed at 17. Please tell Whitley to reach out to me if she ever needs someone to talk to. There are others, like me, out there that know what she is going through and understand the importance of empathy.

    I hope Whitley is doing well and that her disease has been in remission. No one deserves to suffer like that.

    All the Best,

    Katie

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