Life and Living with Crohn's Disease

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Crohn's Lyfe Tough Talk

Diagnosis: Tough Talk Tuesday 1

Being able to put a name to what is wrong is both a blessing and a curse. On the one hand, not knowing allows for a margin of hope to continue to exist that it might just be nothing after all. The alternative, knowing, hand can b*tch slap us into reality, but the great aspect of having a name for what is likely wrong means that a course of action specific to that diagnosis can be developed to begin aggressive and pointed treatment.

In short, it’s like finding out whether or not your crush actually likes you–if he/she does, you can start to move things along. If he/she doesn’t you can come to terms with that fact and “cut bait” or, like many, ignore that and stubbornly continue trying to fit a square peg into a round hole. I am not saying that you should just give up in cases like this, you should always fight for what you want in life, but one should always have a healthy does of reality.

slap a bitch

With the myriad of health issues that I can attach to my body, you better believe that I have quite a bit of experience with diagnosis. Undoubtedly, the diagnoses revolving around my Crohn’s and Clinical Depression/Anxiety have had the greatest impact on the course of my life and my mentality.

When I was first diagnosed with Crohn’s (the depression/anxiety shortly followed), I had endured a summer of discomfort, sickness, and disappointments. Finally, a month (to the day) after Sept 11, I got my diagnosis, and we began to treat my illness (another disclaimer: I am not intimating that all diagnoses are 100% correct). And yet my treatment did not mean that we instantly settled upon a way to “fix” me; it was another 6 months of illness, surgery, pain, missed opportunities, and, at one point, 30 pills a day, to arrive at the conclusion of Remicade. But having a name to put to this “elephant in my body the room” meant that I could go about my life with a sort of comfort that comes with knowing that we had some direction.

no direction

So that takes care of my physically, but what course of treatment did I choose for my mentality?


First, I made the decision then and there, in the doctor’s office, that I would not be a victim. Making this choice a priority in my approach made all the difference. I will say that I might have been a bit too staunch in my anti-victim-ness, even to the point that I would not cry. I would not necessarily recommend the no cry approach in the black and white sense–I can tell you that catharsis and the ability to release emotion and pent up energy is one of the most mentally and emotionally beneficial psychological tactics one can utilize. Even though I maintained my “stiff upper lip,” I did start to journal some, I began yoga, I went to therapy, and most importantly, I went to the farm and saw my horses.

Find something to motivate you and help you look to the future. So many days, I struggled to get out of bed in the morning. In my house, the deal had always been that if you were too sick to go to school, you were too sick to take part in your afternoon activities. For me, PM=Barn and time with my mom. On the days that I struggled mentally or physically to get up (obviously, this only applies to days when I wasn’t running a fever, etc. If going to school would have made me sicker, the option was off the table), I would tell myself, If you can get up and go to school even for a half day, you can go to the barn and see Jerry, Brian, and Penny (my horses). This made a huge difference.  You should have something for which to live. Some days, I couldn’t even ride, but that didn’t mean that I didn’t benefit from my Equine Therapy.

Broken foot, no stirrups, still a boss.

Broken foot, no stirrups, still a boss.

At times, I was simply a nerd that knew I couldn’t miss more school.

Some days, I did my best simply not to scare my mom. I am very, very protective of my family in many ways. I was more worried about my mom most days than I was of myself. Know that your diagnosis affects more than just you personally. Sometimes, I think that my mom suffered greater emotional distress than I did (and moms of the world, I know that you feel the same way). I dealt with the physical, but she dealt with the emotional. She worried about me constantly and also dealt with the brunt of my mood swings (from chemical and hormonal shifts within my body, reactions from pain, exhaustion, frustration, hunger, fear, the list goes on). I spent the most time with her, and while I know she would not have had it any other way, I could be rather difficult at times. I would get so tired of her concern (THANK GOD FOR IT), of being worried about, of being sick ALL THE GODDAM TIME. And I took it out on her. And, to be honest, I still do. But now she shares that responsibility with Alex. I can be tough to love, sometimes, but I (hope) that I can honestly say that I also love hard in return.


Get and give support.

Get and give support.

Request, and if needed, DEMAND the support of your family. Again, you are not alone in this life, and they need to know how to get on board with the fact that you/your body are NOT perfect. No, I do not mean let them point out all your flaws. What I mean is that they need to accept the fact that you might need help beyond “natural” or easy fixes. This can be very, very, VERY difficult for some people to understand and truly accept. Too often, I have met fellow Crohnies whose loved ones cannot fathom that they (the Crohnies) are afflicted with such an issue. Family can be more in denial than the patient. Even worse, the family members/loved ones will often REJECT the patient upon/following diagnosis because the patient is no longer perfect. This is absolutely unexceptable. When you are born with an affliction like Crohns, or PCOS, or Depression/Anxiety, etc, that comes to fruition later in life, you must remember that (and Gaga will back me up) you were born this way. They loved you before with it, you are still the same person. And you must remember that as well: you are still the same person. Don’t take liberties with your diagnosis. No, you cannot go and make out with everyone now, or EAT ALL THE COOKIES because your body will hurt no matter what you eat. This is not a free pass.

Although I could go on an on, I want to wrap up a little bit.

A few quick strategies for actively dealing with diagnosis, big or small:

    • Develop a plan for mental and physical treatment. Pick a goal, and GO FOR IT. Continue to pursue your passions, but….
    • Be smart about your limits. Limits should be tested but respected. Don’t throw in the towel at the first sign of struggle, but know that sometimes, your body ain’t playin’.
    • Keep pursuing and start something new. I started yoga, and I did it RIGHT. I took a few private classes and learned how to properly execute poses. This has provided me with a solid foundation for the practice that I have repeatedly returned to.
    • Remember that you are still YOU and life will not always “suck.” It might for a while, but you are MOVING FORWARD. Think of all of those “life is a marathon” metaphors: you are in a sh*tty (sometimes literally) mile, but you gotta push through that wall, eat some sport beans, and motor on. If you need a break, take a little walk but always with the intention to START RUNNING AGAIN (literally or figuratively).
    • Support your support staff. Take the time to show your appreciation. If you are bedridden, a lovely invention called the internet allows for online shopping. Even just flowers, or ear plugs (to tune you out), will be welcomed and provide some much needed relief and comedy.
    • Have a sense of humor. Find a way to laugh at yourself.  I have Crohn’s. I was diagnosed AT THIRTEEN with a disease that revolves around feces, pus-filled sacs, rectal exams, colonoscopies, bleeding ulcers, hormone fluctuations, ooooooh I could go on. There is very little that is sacred about my body when I am in the doctor’s office. Collecting stool samples is..well..yeahhhhh. Find a way to laugh about it. Catharsis. If you have to wear granny panties, get HILARIOUS ones. I had a pair with a giant gold star that I wore for my first colonoscopy so that they would be sure to know their target. But still retain some mystery so that your loved ones don’t just think of that when they should be thinking about other things ;D



Talk to me, Goose:

How has diagnosis affected your life? Do you wish that you had approached your diagnosis differently, or are you proud of how you reacted? Please share!

If you are the patient, how do you keep changes in perspective?

If you are willing to share, what are some funnies from treatment? Like getting a sponge bath from a parent at the age of 30, or teaching your partner to get comfortable with the fact that you are not responsible for things emanating from your body lol…

And please, please, please do not hesitate to reach out to me if you have questions or just want to talk about what is going on–Crohns, stress fracture, anxiety, ANYTHING. I would be happy to lend a completely objective ear.

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  • Reply pickyrunner

    I’m really enjoying reading these posts to put everything in perspective and learn more about YOU. Every time a post pops up from you I just get so excited, even when they are serious like this one. Your tweets always put a smile on my face and your blog posts are just as well written (actually better, since it doesn’t have to be done in 140 characters). I think you’ll find that sharing these stories actually help you just as much as they help others. You are one strong lady!

    December 10, 2013 at 4:34 pm
    • Reply SuzLyfe

      Sarah, this puts so much warmth in my heart, and yes, that is as corny and heartfelt as I can possibly mean it. I cannot express to both you and Caitlin how much I appreciate your comments and enthusiasm for me starting this journey, and I am so, so fortunate to have you all’s support. The 3 of us are truly unique and tough-as-nails, and I will back you all up to the nth degree. I may be tiny and blond, but I will mess up a b*tch. I hope that we can have the opportunity to meet soon!!!

      December 11, 2013 at 12:52 am
  • Reply chasingchels

    First off, I second what the pickster said (and yes I’m giggling to myself about creating an obnoxious nickname for her…being off work and on my own all day makes me even more childish than usual…I need the boys back obviously). I love learning more about you and hearing your point of view on things. Having experienced more than one mental health issue as both a patient and a family member, I agree with everything you said about your treatment here. I think it’s harder in some ways on my family (especially when I was in treatment) because they loved me so much, had done everything they could to support me in everything I did from day 1, and couldn’t understand what had happened/where I was getting some of my ideas from. I spent most of my recovery time with my mum, as well, and I know she blamed herself for failing me in some way, which really broke my heart. We participated in family therapy sessions together when I was in the hospital, which helped a lot I think, but it definitely took a long time of just one on one chats with my mum before she started to let go of some sense of blame. And I definitely agree with not playing the victim card. Once I was given the tools to start helping myself, it was up to me to use them and get myself back on track. It isn’t always easy, and I have days where I end up wallowing and not using them, but in the end, I’m a fighter and I won’t let my stuff get the best of me. Support systems are huge too. I’ve gotten a lot better about asking for help and thankfully my family/friends have picked up on signs for when I’m struggling and none hesitate to jump in and do what they need to do to help. I’m a lucky lady in so many ways 🙂

    December 10, 2013 at 5:16 pm
    • Reply SuzLyfe

      I love reading this response. I can’t imagine having family therapy sessions–I have always been so informal with regards to my treatment and my discussion of it with my family–always one on one. I think that Alex was much more of the opinion that I had a serious problem, eating-wise. My mom (and this is no fault of hers) could more easily write it off as Crohn’s complications. Everyone was and is at such a different point in what they think I went through, and I think that had I really been like, I have a problem, I would be so much farther along. In fact, I know it. I was in the dark for far too long.
      I love that you stand behind yourself as NOT being a victim. You have to be strong in that conviction, and I can back you up that you were not. I also think that it is so important that you admit that sometimes, things are hard, but that you have not failed. Whether it be your brain (like with ED) or your body (like Crohns), these are obstacles, not walls. They can still be overcome, you just need to learn how to climb.

      December 11, 2013 at 12:57 am
  • Reply Laura

    I have to say that I agree with you on everything. I’m also a Chronie who suffers from anxiety/depression and disordered eating. I’m so thankful that I randomly found your blog!!!!

    December 13, 2013 at 6:17 pm
    • Reply SuzLyfe

      Laura, this makes my day! I am no expert, I simply have a story to share and a whole bunch of thoughts. I hope that my trials and tribulations can help shed some light on what you are going through, and please please continue to comment and send me am email or tweet f you want to chat!

      December 13, 2013 at 8:17 pm
      • Reply your mommy, Clare

        Given that I just now finding this entry—let me throw out some “funnies” into a not-at-all-funny illness and some of MY reactions to it.

        One of our “fun” ways to deal with the GI doctor visits, especially when you were really sick and they were invasive, was to go to either Victoria’s Secrets or the Gap for new fancy undies, on the way back home.
        Our theory was that it THAT many people were going to stare at your butt, at least it should be well dressed!
        I still think that that solution is quite valid–for whatever ails you!

        Often, at night-or actually, during the really early morning hours, I would have to take “poop” to the hospital lab for the cultures to be run. I wasn’t driving carpool-I was driving carpoop.

        For this nocturnal visits, I would take the “evidence” in an appropriate container, but I’d put it into a party birthday gift bag with bright tissue paper. The lab techs, whom I was on a first name basis with, would laugh that Susie’s mom had brought another party favor!

        You have to laugh-a sense of humor can cure a lot of ills–at least on a short-term basis.

        April 4, 2014 at 12:29 pm
        • Reply SuzLyfe

          I could never have gotten through any of this without you, beyond taking my gifts to the labs (ha remember last year??). You and the horses, you got me through

          April 4, 2014 at 7:16 pm
  • Reply Tough Talk Tuesday: Treated with a Guest Post | SuzLyfe

    […] like to dedicate Tuesdays to subjects that, while they may not be the most pleasant, in fact lead us to find the sunshine and happiness […]

    January 7, 2014 at 1:24 pm
  • Reply Re-Post: Diagnosis | SuzLyfe

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    April 22, 2014 at 6:30 am
  • Reply chronicisms

    Clearly I’m a little late to the party, but I love this post! By way of introduction, after being sick for about 6 years, I was diagnosed with Crohn’s when I was 11, and have since been diagnosed with a couple of other unkind things, such as POTS. In any case, as my life has changed as I’ve gotten older, I’ve had to totally adapt my old ways of coping with the disease, and as I’ve been living in a developing country for about 5 months now and am coming up on college graduation next year, in physical as well as emotional ways.
    I’ve been grappling a lot lately with feeling like I’m simply being a burden to my family/friends when I need to vent about being sick. They often get frustrated and can’t understand the fact that a lot of their suggestions either aren’t realistic or have already been tried, and failed. While I’m trying to find a balance of being able to talk about it in a serious manner without driving everyone around me insane, I haven’t quite figured it out yet, but reading this has helped remind me of another perspective on things that I had almost forgotten. I reacted in a very similar way to you, even at 11 years old – I don’t think I ever cried, ever let myself lose it even a little bit, and I always insisted that it was going to be okay, because of the effect everything was already having on my family. I’m glad I stayed strong for them, but my lack of reaction in the early years is definitely catching up to me now.
    But lately, as I’ve started trying to let people in and explain a little bit of what my life is like when I’m flaring (and even when I’m not), I’ve realized how hard it is to actually verbalize the feelings after years of keeping it all bottled up, which is what prompted me to start writing random little musings of whatever pops into my head about living with illness. With my writing I’ve been coming across revelations about my perspective that I didn’t really realize existed before, and I definitely plan on taking those of your other tips that I don’t already follow under consideration as well; I can picture them all being very helpful to me.
    In conclusion, thanks for the post! This was exactly what I needed to read right now, I think. 🙂

    April 22, 2014 at 4:44 pm
    • Reply SuzLyfe

      Thank YOU so much for this comment, and I look forward to reading some of your “little musings”–I am sure that they are far more than little, even if they are musings. I have been fortunate to have enough to have people who have grown with me and have, on occasion, forced me to call myself on my own bluff. Doing so helped tremendously–I think my mom especially knew that at some point I had to break. I was so, so fortunate to have her (and others) unending patience–my husband is no different, but he is also a saint (trust me, he is). It is amazing to me how stoically some children react to hard times. Obviously, a great deal of this is tied to maturity, or being an ‘old soul,’ but still, the resolve amazes me. I think that the next step in this maturity is to realize that we can’t always be impenetrable–and that leads to vulnerability, which I think can scare other as much as it scares us. Negative reactions come from all sides: Some people just don’t have the “patience” to deal with your problems; some people care so much that they can’t handle seeing you in pain; and others simply don’t understand that these diseases are not like a cancer with a good remission rate. I always want to scream “What part of incurable do you not understand?!”
      But just know that you are never alone, and that there are always others who understand, commiserate, and want to help. Please stay in touch, and thank you so much for sharing your story.

      April 22, 2014 at 6:00 pm
  • Reply Revisiting Dealing with Diagnosis

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    October 27, 2014 at 3:42 pm
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