17 Comments

About

Dear Friends,

I am writing to you with the hope that I can make your life just a little bit brighter. That hope is what governs my friendships, my academic pursuits, and my involvement in the United Ostomy Associations of America (UOAA) and the Crohn’s and Colitis Foundation of America (CCFA). Throughout my years of illness, I continuously gather knowledge that helps me get through the challenges of Crohn’s disease and having an ostomy. I am willing to share my haphazard collection of thoughts, not because I think I have all the answers, but because I think I might have a few useful things to say. We shall see.

While I write, I think of my wonderful friends. Through CCFA’s Camp Oasis and the UOAA conference, I have been blessed with the privilege of meeting people who share some of my experiences. These beautiful people encourage and support each other when life gets rough, and they rejoice with each other when times are good. I want the best for them, and for you, dear reader. If I have any scrap of advice, encouragement, or empathy to share; if I can alleviate someone’s frustrations just a little, this will be well worth the effort.

I should tell you a bit about myself. For now, we’re just going to skip over the interesting parts of my health history. Here’s why: weird things happen with me. I do have organ systems that are fine, but most have been screwy at some point. One doctor called me a “delicate flower.” Ha. A lot of them look a bit concerned when they look at my chart. Most things are complications of Crohn’s disease and nasty medication side effects, and the rest is just lousy luck and inexplicable quirks.

I was diagnosed with Crohn’s disease when I was 14, I went through all the various treatment options, including a feeding tube, until some of my innards were just beyond saving. The idea of ostomy surgery absolutely terrified me. Turns out the darn thing saved my life, and I am free from some of the challenges of a perpetual Crohn’s flare. My life no longer revolves around bathrooms, and I can eat so many foods that I had to avoid entirely for 8 years.

Those of you familiar with any illness-related community have heard lots of “comeback” stories by now. I think those stories are told to show us that we can overcome our limitations and achieve great things. I respect everyone who has overcome their obstacles and gone on to be awesome, and I will always support their efforts. But I have a serious problem with comeback stories. I am truly happy for the storytellers, but I always feel like they are stronger, better people than me. I definitely have not reached the comeback stage. Every day is a struggle for me, and sometimes I have no idea why I choose to continue waiting for things to turn around. I know I am not the only one who deals with these issues. That, my friends, is why ostomy support groups and online communities exist. We need to stick together!

Love from your partially unstuffed friend

I look forward to hearing from you as you explore and enrich our communities! You can reach me at partiallyunstuffed@gmail.com or find me on Facebook

17 comments on “About

  1. Thanks for the follow! Brilliant blog by the way

  2. I’m a bit of a comeback story, but make no mistake, we comebacks are still fearful of the return on a daily basis. Good luck with your struggle!

  3. Hello PatiallyUnstuffed! Looks like we’re both recent bloggers. Thanks for following mine. I think your blog is very informative and a good, trustworthy resource. Your blog will inspire and help many people. I wish you much strength to continue your mission to help others.

    Michelle
    (cancer4me)

  4. I just stumbled across your blog via an email from the CCFA. I must say…you are a strong, brave, and beautiful young woman! I’m a fellow “post-surgical Crohnie” (as MY Crohn’s friends call each other), though my story pales in comparison to yours. I have bookmarked your blog and fully intend on keeping tabs on your journey. Thanks for doing this!

  5. “Plants cure, drugs kill!
    Crohn’s is being misdiagnosed all over America and is only genetically possible if the person is of IRISH descent.
    There is no such thing as fibromyalgia and irritable bowel syndrome either; these are phony names to sell more bad for you drugs.
    What the symptoms are attributable to is inflammation caused by the consumption of High Fructose Corn Syrup, and harmful high intensity sweeteners – including Splenda, Nutrasweet, Equal, Sweet N Low, Agave, Truvia, Purvia, Suncrystals, Crystalline Fructose, Corn Dextrose, Corn Syrup, Xylitol, Mannitol, Maltitol, Sorbitol, Erthyritol, Tagatose, Lactitol, Polydextrose, Neotame, Talin/Thaumatin, etc.
    Want results, not chemistry and unwellness?
    GOT ZIJA?!
    ~ Uncle Russ”
    http://www.russbianchi.com/wordpress/?s=crohn

    Check out Russ Bianchi’s web site – he is a world expert in all things food and medical (he was a neuro-surgeon at age 21…)
    Love your posts and love learning more about so many new things every day!
    Peace.

  6. Thanks for the follow, but thanks even more for your refreshingly candid and eloquent blog! Looking forward to reading more!

  7. I was diagnosed with UC last June. Blogs like this make it easier. Thank you for writing.

  8. This is the first blog I’ve seen that gives me hope someone out there isn’t a comeback story. Sometimes I want to tell all my friends (and I have great Crohnie’s) running half marathons to go away…I was diagnosed in 2001, have had many surgeries, every medication, etc and can’t work or live a normal life. The doctors ask, “what is wrong with you?”…I don’t want to focus on being sick but I need to spend a lot of time explaining and documenting what is going on for insurance purposes. I don’t think anyone really “gets” it….to never find remission, to be ok with no answers, to beg for acceptance and/or acknowledgement from people who should at the very least try to understand but instead judge or turn away.

  9. I mentioned your blog in mine, https://www.outlooklife.com/life-insurance-blogs/learning-from-a-guy-with-crohns/, as you were an inspiration. Keep it up and take care.

  10. Hi, my name is Leah and I’ve just found your blog via The Caged Bird Still Sings. I am a new blogger and I was diagnosed with Crohn’s Disease 12 years ago. I got my Colostomy in 2008 and then had to switch to a permanent Ileostomy. I’ve enjoyed reading about you and like how honest you are about what you’re going through. The whole reason I started a blog was because I have so much respect for bloggers who get out there and just tell the truth. It’s so inspiring and I want to be a part of it. Brutal honesty – I think that is what will help bring awareness to Crohn’s Disease. The fact that it’s known as the “Invisible Disease” tells us right there that most people can’t see the symptoms and that’s why it’s so hard to get awareness out there.
    Plus, people who are new to what we have been dealing with for a long time, need someone to relate to. Doctors and nurses can tell them what they think – but they don’t know. When I got my colostomy, a doctor came in to explain to me how I would empty it… and it was horrifying. He was CLUELESS and I was hysterical. There was just such a lack of education. I think it’s so great that you’re out here, telling your story. Keep it up!
    I’m working on getting a guest post series on my blog, and I’d love to feature you once I get it going. Is that something you might be interested in?
    Leah Sannar
    Life, Lemons & Lemonade
    http://www.lifelemonsandlemonade.com

  11. Hi, guys need stuff too! Pants with elastic waists. Loose fitting shirts. I dread summer because I need to shed my wonderfully concealing hoodies. But my nasty office manager (dress codes ..) will be pleased. Any ideas for men’s casual business attire woukd be greatly appreciated 🙂

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