Learning about Crohn’s Disease

In one of my courses, Clinical Nutrition, I have been learning about many different types of diseases and disorders…

 

Throughout the semester, which is almost over (can I hear an amen!?), I found one ailment in particular very interesting – Crohn's Disease. Coincidentally, a lovely blog reader of mine, Susie, lives with Crohn's Disease and was more than willing to write a guest post for me, so we can all learn more about it! 

Take it away, Susie!

 

 

Crohn’s Disease.  When I was first diagnosed with this lovely little ailment (exactly) eleven years ago, very few people had even heard of it.  I certainly didn’t know anyone personally or otherwise who had any sort of issues of the sort, beyond a food allergy here and there, a few friends with Type 1 Diabetes, the occasional lactose intolerance, and, increasingly for us girls, bad menstrual cramps. One of my brother’s close friends battled (and won) against Leukemia (it was not an easy battle). I pretty much expected to have to start counseling and treatment for depression, monitoring for colon cancer, bad allergies, skin screenings, hormonal issues….. In short, I’m not surprised that I have digestive issues.  It just hit a bit earlier than we all expected.

 

When Meg asked me if I would like to write a guest post for her on Crohn’s Disease and why I fundraise on behalf of the Crohn’s and Colitis Foundation of America and CCFA’s Team Challenge (with whom I have now ran 2 half marathons (both this summer) and my mom has walked 6 half’s), I found myself pulled in so many directions; my head is filled with so much to say, so much that I want you all to know: daily life (both the good and bad days) of living with a chronic illness; why there is no “cure-all” or “standard treatment” for this disease; the seemingly never-ending ways in which it present.  There are the psychological implications of living every day, particularly as a teenager, now a young woman, with a disease that covers REALLY unpleasant territory (very few people know my original presenting symptom, it’s just too personal and I don’t want that to be what they see in me).

 

Oh I could go on and on.  But basically, what it boils down to is this: Crohn’s, Ulcerative Colitis, Irritable Bowel, none of these guys are fun.  They are horrible dates and always make you pay for the meal often without you being able to enjoy or even eat any of it.  But, like any bad date, Crohn’s has taught me a lot about myself and how to take care of my body.  Nowadays, I meet people often with Crohn’s or who know people with the disease.  Look around the blogging world—Ali on the Run, Say What You Need to Say, Carrots N’ Cake, the list goes on.  I learned a lot of my “knowledge” and “wisdom” the hard way: trial, error, sheer stubbornness, stupidity.  And while I would love to elaborate on those, I don’t want to hijack everyone’s days, so I think I shall leave you all with a few topics/lessons/what-have-you, make a plug for my organization, and avail myself to those who have further questions.

 

(A Few of) Susie’s Tips for Living Awesomely:

 

 

1) Remember that there is always someone else.  

I mean this in a few ways:

 

a. You are not the first person in the world to have this issue.  They would have told you, rest assured, if you were. Someone else has (likely) survived your circumstances—and if there aren’t any who have, well then, try your damned-est to be the first.

 

b. Reach out and talk to someone who understands even in the smallest sense what you are going through.  I internalized a great deal of what I was going through because I thought I was burdening others.  If that is the case, they can’t be that important to you, as those who care about you WANT to help.  

 

c. Thank those around you for their patience and understanding.  And if they are not both of those things, send them to me and I will straighten them out.  You cannot help what you cannot help, but you can control your reaction and response.

 

d. Honestly, there will always be someone who is worse off than you.  I don’t say this to shame you, but to keep things in perspective.  

 

2) Do. Not. Be. A. Victim.  

Does taking over 20 pills a day and using numerous gels and patches and having infusions and blood tests and colonoscopies and the inability to eat a “normal” diet and blah blah blah suck? Duh, of course.  But get over it.  You don’t need to be eating a “normal” American diet anyway—that will kill you WAY faster.  Learn to cook, clean stains, get creative in the bedroom, and work around the times of day or week that you know will be rough.  GIVE YOURSELF A FIGHTING CHANCE AND STOP SELF-SABOTAGING.  Have a good, cathartic cry, keep a journal that helps you work through your emotions as well as what does and doesn’t work for you, and learn from every day.  You are alive, and you are only capable of that which you try, so start trying.

a. “May you live every day of your life”—Jonathon Swift

 

3) Listen to your body, but learn to distinguish nonsense from the real thing. Respect your limits, but know when to push through.  

Your body and mind will fake you out at times.  And sometimes, they ain’t playin.  You will learn to tell, if you truly listen.  Trust me.  I have run two half marathons, but I know better than to not ask for my dressing on the side or things to be cooked dry and without cheese. Rule #76—Play like a Champion.

 

4) Every day, allow yourself to be thankful for something your problem brought your focus to, and find one bright spot when things are sh*++y.  

Doing colonoscopy prep alone is atrocious; doing so with your significant other by your side is ridiculous.  But you know what? I know that the man I am planning on spending the rest of my life with will indeed stay by my side when I crap my pants.  For real.  I ADORE salads (beyond just the vegies) because I get to have fun with my food, and mix and match flavors, and really taste each ingredient.  And I get to have frozen yogurt (sup bacteria) as much as I like (every night). Holla. I am thankful for each and every small victory.  Because I have learned that though my body can disappointment me terribly, it can surprise me in the best ways possible.

5) Do not be afraid of what you have to deal with.  A lot of people do not like to talk about Crohn’s and “unseemly” topics of conversation.  And no, such discussion is not always appropriate for venues etc.  But it is now a part of you, your body, who you are, and who you will become.  Crohn’s arises in my stories because it is an indispensable part of who I am.  But so does my fiancé.  Can you talk about high school without mentioning a team, a class, or a sweetheart that was important to you? Didn’t think so.

 

And now for my little baby plug:

 

I fundraise for the Crohn’s and Colitis Foundation of American (CCFA) through Team Challenge (specifically Team Challenge Georgia) so that others might have the opportunity to gain the insight that I have and to seize upon the opportunities to turn their “curses” to gifts.  Or, I hope, one day to not have to suffer this bittersweet life course at all.  I have been incredibly fortunate in my life to have an amazing family, medical insurance, and doctors on top of their game.  But not everyone has these benefits. 

Crohn's and Ulcerative Colitis affect MILLIONS of people, from babies that are weeks old and will never have a normal life, to teenagers, to adults, to the elderly. No, this is not a terminal illness like breast cancer or leukemia. But trust me when I tell you that for those of us and our families that are affected, Crohn's and UC are very real, very scary, and very influential in our own lives as well as very influential in the lives of those who love us. While these diseases may not kill, the side effects might. Sometimes it hits you out of nowhere; sometimes it slowly creeps up on you, until you realize that you should have sought help weeks, if not months ago.

I am in the special situation of A) living with Crohn's Disease, B) being stubborn and C) loving to be active and especially to run. At the moment, none of these things has a cure, and while there is very little to be done about b and c, there IS something that the public can do about A: Research is progressing but there still is no cure. Please help us in our journey to change this fact through your support of CCFA, Team Challenge, and your friends and family dealing with these issues.

 

 

I hope you all enjoyed Susie's guest post  

 

Do you know anyone living with Crohn's Disease?

 

See you tomorrow!

 

Meg xo

 

Don't forget to submit your high fives to me for this week's High Five Friday post! It's the 40th one, so I want you all to submit a high five Let's make the celebration BIG! For more information about High Five Friday please read the High Five Friday page.