If I was going to write a letter to the CCFA …

***the following was written while in tears, my computer crashed making me lose half the document initially, and now I don’t have anything in me to add hyperlinks and other things I normally would given the only way I can write on this blog right now is from a mobile device.***

{ trying to be real and honest and no sugar coating with you all }

Dear The Crohn’s Colitis Foundation of America (CCFA),

My name is Marisa Troy and I was diagnosed with ulcerative colitis at the age of 13. My disease was so severe that I needed to undergo a total colectomy two years later, where I was told I would be given a “pouch that looked like a J made out of my small intestine.” My parents and I were told that this J-pouch would act as my colon and I would never know the difference. We were all assured that I would be cured; as though ulcerative colitis never entered my body and our world.

I am not going to go into the details of what I have been through because this letter would be 100 pages long. I also don’t think you need to hear my sob story in order to understand how detrimental the “cure’ word is when referring to surgery for ulcerative colitis.

I have tried everything under the sun to get your organization to respond to me on social media. I have tweeted numerous blog posts to you, questions, facts, other patients’ stories/comments, etc and never once have I gotten a response other than a link to your website and a caption that says “50% of patients with Jpouches go on to suffer further complications” thus proving my point even more so.

Not once have I gotten anything back from your organization and it is the main reason I am not a huge supporter. I am a firm believer that if you put something out there than you should be able to back it up. You should be able to dialogue with someone like myself about WHY you feel the way you do. I have no issues with a difference of opinion; I have a ginormous issue with putting out terribly inaccurate and misleading information and then having absolutely nothing to say back when someone questions it.

I could have picked any day to write this letter to you so why today? Because I am now 28 years old and have been fighting this battle since the day I was given my diagnosis. Today is the day I need to write to you because I have been up all night with my body feeling more anxious and panicky than I could handle.

You see… when my parents and I were told this surgery would “cure” me, we believed it. I saw the reality a lot sooner than my parents given it is my body which was incredibly detrimental to my life. I had the “you should be fine now” mentality driven into me day after day. This came from inside of me (because of what I was told as a young teenager) and from my parents. I have felt like a constant and utter disappointment since I had my colon removed. I was never fine.. in fact, far from it. But my parents always thought I should be. Which made me feel like there was something wrong with ME for not being able to go about my merry way.

Fast forward to now. I feel utterly broken and exhausted from fighting. It is not just fighting this disease but from life. I am exhausted from fighting people in my life who probably would have had a different mentality had we been told this surgery was a “treatment option” not a cure. I have been made to feel terrible about myself for not being able to get through high school in four years, or college, or go on to persue my masters degree and then a fulfilling career. All those things people who are truly “cured” should be able to do. I spent 5 years in high school, 6 1/2 in college just to have a degree (that I can’t do anything with!) I am a determined and driven person by nature. I don’t go down without a fight.

But seriously… I am losing that battle. And when I really stop and think about why mentally things are weighing on me so much… it all stems from being told (and having it ingrained in me) that I should have gone back to the way I was pre-ulcerative colitis. I feel like a complete and utter failure, burden and disappointment. Everyday.

The reason I was up all night? My parents got a huge bill from an ER visit (yes I am still on their insurance given my medical past and present), and we all know there is another one coming from a small bowel series and my most recent ER visit earlier this week. I have further testing that needs to be done but cannot find it in me to schedule anything. My mentality has changed dramatically now.

I got the records from my appointment with a new GI who started off our conversation with “I see you were diagnosed with ulcerative colitis in 2000 but since had a total colectomy. So techically you are cured. Congratulations.” She also threw her hands up when saying this. I had no idea if she was being sarcastic or not and honestly, still do not.

Those records went into detail about my medical and surgical history from ulcerative colitis and the associated autoimmune skin disorder, pyoderma gangrenosum. I saw what was wrong with each of my operations. I was reminded of how terrible the PG was. It brought me back to a terrible place last night, the middle of the night, and this morning. Traumatic things I try hard not to think about were brought very much to the surface.

Which wouldn’t be such a big deal if I could just bury things again. However, due to recent events, I have no choice but to file for disability. I have held off on this for such a long time because 1) I should be fine so never felt I needed it, then when I did realize I did 2) I was ashamed since my family still felt I should be all better by now, and once my family seemed to understand a little more, 3) the realization that I would have to get all of my medical records from every doctor I have seen, and re-live so much of what has given me post traumatic stress disorder, was too much to bare.

So here I sit. Fourteen and a half years following my ulcerative colitis diagnosis and twelve and a half years following my curative surgery.

And I am still fighting for any decent quality of life. I am still talking about medical bills and dealing with insurance companies. I am still frustrated with doctors. I am still being told by too many people in the medical world how complex my situation is and therefore, most cannot help me.

Ulcerative Colitis impacts your entire body. It is an autoimmune disease. Your colon is a major organ. My new GI can claim it is “non-essential” but I am someone who is missing mine (I am assuming my doctor has her digestive track in tact) and here to say NON- ESSENTIAL MY ASS!!!!!

The wording that you use has impacted my life enormously. My pediatric GI who I know worked closely with your organization got the ball rolling by telling me how cured I would be. She had the nerve to dismiss my issues following my surgery as an eating disorder; given I should be cured and therefore, experiencing no problems whatsoever. This mentality stuck with my parents for YEARS AND YEARS thus making me feel like more of a failure every single day.


So I ask you again… Enlighten me on why your organization uses that term when there are tons of people just like myself, post total colectomy, and still having it impact their lives so greatly. Do you not see how detrimental that is? Do you not see it? Really?!

  • Jeffrey LeVine

    Wow. First off (((Hugs))). Second…You Go Girl!!! I am sick of hearing the C word thrown around with IBD. Plain and simple, there is no cure. I so hope you sent this to the CCFA.

  • Sheila Bergquist

    I am wiping tears away as I type this. I feel your pain, frustration, anxiety, depression and hopelessness so keenly. I just want to wrap my arms around you and give you a good hug. I hope you sent this to them and that you get some kind of decent response. You can be very proud of yourself for enduring all that you have and please, don’t ever feel like a failure. You are one of the strongest people I know. Keep us posted on all of this. In the meantime, know, with all your heart, that your site has helped so many people and you are loved by all of us! You are a hero.

  • http://www.thecagedbirdstillsings.wordpress.com Lauren Shaak

    Great Post! I love your honesty!

    • journaling

      Thank you so much Lauren! :))