Life and Living with Crohn's Disease

Life and Crohn's

Running Tips and Fitness Advice

Let's Talk Running

Coach Suz Training

Work with Me!

Crohn's Lyfe Tough Talk

What is Crohn’s Disease? (Living with Crohn’s Pt 2)

Last days to use code SUZLYFE for $5 off at Jessica’s Naturals!

WHAT THE BALLS IS CROHN’S DISEASE

Well, that is at least what I imagine goes through most people’s brains. Or would go through mine.

what-is-crohns-disease-suzlyfe

When I left off telling my side of Living with Crohn’s Disease, I had taken you all up to the point when I started Remicade.  But before I proceed any farther into my story, I wanted to take a minute and actually tell you all WHAT THE BALLS Crohn’s Disease is, why it is such a slippery and elusive little bugger, what are some typical treatments, and a few other points of interest. I am going to try to make this as understandable and accessible as possible without dumbing it down—essentially, this is how I explain Crohn’s to just about anyone that I meet. A mixture of technical and what you actually need to know.

WHAT IS CROHN’S DISEASE

Crohn’s Disease (and Ulcerative Colitis, with which it is commonly paired with, as in the Crohn’s and Colitis Foundation of America, or CCFA) is an Inflammatory Bowel Disease. IBD is a completely different and separate entity from IBS, or Irritable Bowel Syndrome, though many with IBD also suffer from IBS. IBS is, at its most basic, essentially a sensitive stomach, but it can range in severity. Amber does a great job as a spokesperson for IBS, and with April as IBS Awareness Month, I urge you to check out her informative posts on IBS and IBS treatments.

IBD, however, is a different animal. This is not to say that one is worse than the other—truly, it every much depends on the person and the individual case. The inflammatory aspect of IBD is what sets it apart—this is an immune system  response. In essence: my body’s immune system attacks my digestive system.

The fact that my immune system attacks not only my colon but the entirety of my digestive system (from mouth to mouth, as it were), is important in distinguishing my disease from UC, or Ulcerative Colitis. Colitis denotes inflammation of the COLON with a presentation of ulcers. I have had ulcers in my colon as a symptom of my Crohn’s, but without being diagnosed with UC. Kind of like Square—Rectangle, if you will.

WHAT WERE YOUR PRESENTING SYMPTOMS?

Alright, this is the part that is “gross” and quite personal, but I think is 100% necessary. I’m gonna be pretty cut and dry about it—a lot of this is looking back and perspective—we didn’t necessarily realize it at the time.

  • Diarrhea as well as spasmodic colon. What came out wasn’t formed, but often my body was dry heaving, if you understand. And it could come out of nowhere—one minute you are ok, the next you are RUSHING to the restroom. Only to have nothing come out. However, I am not a vomit-er: if I am vomiting, it is likely not a cause of my Crohn’s—that means something else is at work.
  • Constipation. Body can’t make up its damn mind. But it thinks it needs to go. Miralax can help, but really, not so much.
  • Cramping from spasmodic colon as well as severe gas (and bloating). Think knife in belly that is being twisted.  Alternatively feeling like the Michelin Man. Sometimes at the same time. And no, Gas-X doesn’t work (though you take it anyway).
  • Anemia and poor blood levels (Malabsorption).  Your body isn’t absorbing anything, and if you have ulcers (a standard symptom of inflammation and IBD), you are basically chronically bleeding, leading to low iron levels and vitamin deficiency. 
  • Ulcers throughout your digestive system (including your mouth).
  • Acid Reflux
  • Poorly healing skin. My skin doesn’t heal well when I am flaring and is more prone to breaking down.
  • Peri-anal abscess. (for Fistulizing Crohn’s Disease, which I have) To make this short and sweat, I had a body cavity of infection the size of a softball that was attached to my anal/rectal wall. (Thus why we thought I had hemorrhoids—the area itched, burned, and hurt terribly) The pressure on the abscess made it hard to stand or sit for long periods of time (squatting was most comfortable). I ended up having a relationship with an incredible Colo-Rectal surgeon for a while. She is the one who did my surgery in December 2001, where they cleaned out the cavity and put in a drain, which drained continuously until my birthday (April 9) in 2002, 4 days after my first Remicade treatment.

Other common symptoms (which I have also had):

  • Impactions (this is not constipation. This is cement, and nothing is getting through)
  • Strictures (which I have had)—loops of intestine that become pockets of ick.
  • Fever
  • Amenorrhea (Loss of menstrual period)
  • Night Sweats
  • Fatigue (often linked to the anemia) 

WHAT CAUSES CROHN’S DISEASE?

Good question. We honestly don’t really know. Research has proven that there is a genetic component—a predisposition to the disease. But just because your mom has Crohn’s does not mean that you will. Colon and digestive illness runs throughout my family, and we pretty much knew that I would be getting something, just like we knew that I would likely have hormone issues and some variety of depression (all of these things all over my family’s medical history). But we didn’t know what or when or how.

Crohn’s Disease, UC, and, in fact, IBS have a favorite victim: adolescent-young adult aged white, type-A female in developed countries. This is not to say that other people don’t have it—I know many men and African Americans who have SEVERE Crohn’s. But I do mention this because it plays a role in my disease. Why is that? Stress + Hormones. I tend to flare during times of acute stress and or hormone imbalance, which then can cause my Crohn’s to get even worse (and also promote stress) and thus the vicious cycle. My clinical depression and anxiety was diagnosed after my Crohn’s was, but looking back—that coming to grips with my mortality watching Armageddon that I mentioned? A panic attack.

When I turned 13, something shifted in me hormonally—I had always been a “hot” kid, wearing shorts in winter and such, and I had a terrible time getting to sleep, and then was impossible to stay asleep, and I was very much a “sprinter” (but then again, still not so fast). Three weeks after I turned 13 (seriously, I remember it because it was the craziest thing), I started getting up with my alarm. Then, I started being a bit “cooler” temp wise than before (helpful during the Atlanta summers, I tell you what). About 2 months after my 13th birthday, I started growing the abscess, and I was diagnosed that fall.

What are the treatments for Crohn’s Disease?

To keep this a bit more manageable with regards to length, I am going to briefly mention the most common approaches. 

  • Medication Often employed in a Dual Therapy approach (which I follow) more info here
    • Biologics can be administered via IV (like Remicade) or subcutaneously (a shot that you give yourself) like Humira. I have been on both. These drugs actively work to help neutralize my system by selectively interfering with my immune system. Check out this page for more information.
    • Immunomodulators tell my body to SIMMA DON NAH by suppressing and modulating how my immune system works. This keeps my immune system at bay and also allows my digestive system to heal.
    • Corticosteroids nonspecifically suppress the immune system and are used to treat moderate to severely active Crohn’s disease.
  • Diet and Nutrition 
    • Obviously a big part of my life–we all know that eating well promotes greater health. Well, so does eating certain things. That is why I follow the diet that I do, and take the care of myself that I do. 
  • Surgery
    • I have not yet had surgery to treat my Crohn’s Disease. I did have surgery, yes, but it was to treat a symptom (the abscess) and had no bearing on my disease. Because my presentation is literally all the way through, they cannot just remove a piece of my disease where  it presents—there would be nothing left for me. This is an option for some—and some even are essentially cured after! But for my disease, there is no cure, surgical or otherwise.

Additional Therapies

  • Cognitive Behavioral Therapy
    • I saw a therapist for several months after diagnosis, as noted last week. I also take Effexor for anxiety/Depression.  And I shrink my own head.

    Hormone Therapy

    • This is difficult. I am currently only on birth control, but I have been on a rather intensive protocol before after not having a period for 3 years. To be honest, the lack of period wasn’t so troubling—we were more worried about my bones

How long do flares last?

Erm. Well, that’s like asking how long are you going to like eating oatmeal for breakfast. A flare lasts until you find the right course of treatment, or your body magically decides to cooperate. It also depends on what you consider a “flare.” I consider a flare significant enough to impact my daily life and or cause me to call my doctors and receive medication. But I have symptoms of my disease periodically. Sometimes that just means a week of really bad gas for no reason. A flare, though, is like the difference between allergies and a cold. Or a 24 hr I don’t feel so great and the flu. You KNOW that something is wrong, though it might take you a few days to really realize it. Sometimes, they creep up on you. Sometimes, they slap you across the face.

Crohn’s pain and episodes can literally come out of nowhere. When I am in flares—sometimes every hour of every day SUCKS. But sometimes I’ll have a good day, then I’m basically bed rest the next. Often it is hour to hour: I’ll feel good enough to go somewhere, only to be in a state of near panic once we get there because I feel so terrible. That’s why so many people with IBD’s and such tend to become a bit reclusive—we get scared of it hitting when we are far from home.  One moment—we have color in our face and twinkle in our eyes. And the next? I turn ashen gray-green and just drop—go dead quiet, or double over in pain. It is the most frustrating and abusive relationship, because it leads you on and then pulls the floor out from underneath you. But that is also why I feel it is so important to surround yourself with people who support and love you regardless because they will help you get out and enjoy life as much as you can, and carry you home if need be.

Because of the length of this post, I am going to hold off on talking about the long term effects of my disease. But I hope that you all found this helpful!

Do you have any other questions? Do you know anyone with Crohn’s Disease? How do you try to support them?

Previous Post Next Post

Have you read these gems?

82 Comments

  • Reply CARLA

    OH MY GOODNESS THANK YOU FOR THIS.
    sharing with a friend….
    CARLA recently posted…I owe nothing to other mothers.My Profile

    April 14, 2015 at 5:29 am
    • Reply suzlyfe

      Of course. Please let me know of I can help further

      April 17, 2015 at 3:57 pm
  • Reply Renee @ Bendiful Blog

    This is perfect Susie I’ve got some friends I’m going to share it with. As always you are my hero! Fight the good fight Susie!
    Renee @ Bendiful Blog recently posted…Every Decision Has ChallengesMy Profile

    April 14, 2015 at 5:40 am
    • Reply suzlyfe

      Baby fist pump! As I just said to Carla, let me know how else I can help!

      April 17, 2015 at 3:57 pm
  • Reply Run Colby Run

    Such an important post Suze. You were dealt a tough hand but boy are you playing to WIN! My Ulcerative Colitis Ex would talk to folks going through the same thing. His was (obvs) a very different beast than yours. He had surgery, and is considered “cured” although his case study was published because of its severity. Insane. I wasn’t aware of the types of Crohn’s. You’re one strong broad Suze. xoxoxo
    Run Colby Run recently posted…Training for Boston…In Boston!My Profile

    April 14, 2015 at 5:59 am
    • Reply suzlyfe

      Although he’s an ex, and therefore I am suspicious of him, I am happy they were able to help him. and tough broad to tough broad xoxo

      April 17, 2015 at 3:59 pm
  • Reply Annmarie

    Thanks so much for sharing your story and more about Chrons! My aunt has it and while she is doing well now (or seems to be managing it) when it flares up, it is not pretty.
    Annmarie recently posted…Stay Balanced with Phenoh 7.4My Profile

    April 14, 2015 at 6:02 am
    • Reply suzlyfe

      So sorry to hear that! how long has she had it?

      April 17, 2015 at 4:00 pm
  • Reply Heather @Fit n Cookies

    You’re amazing. That is all. Love you and your story. Though the fatigue symptom I’m questioning because you’re the energizer bunny and never stop! (in a great way of course!)
    Heather @Fit n Cookies recently posted…So I’m running a half marathon while pregnantMy Profile

    April 14, 2015 at 6:13 am
    • Reply suzlyfe

      Hahahahhaha zzzzzzzzzzzzz

      April 17, 2015 at 3:56 pm
  • Reply Stacie @ SimplySouthernStacie

    Thank you again for sharing all of this, Suz. My friend who has Crohn’s will talk about it, but not in this great of detail. So, I’ve never fully quite understood the disease as a whole. Also, as someone who has family with IBS, it was also interesting to read about the difference between IBS and IBD.
    Stacie @ SimplySouthernStacie recently posted…Goodbye Master’s WeekMy Profile

    April 14, 2015 at 6:16 am
    • Reply suzlyfe

      It can be hard to know how much depth to go into, even with friends. I’m glad that I was able to fill in some of the picture.

      April 17, 2015 at 3:56 pm
  • Reply carissajade

    Thanks for this. All I really knew about Crohns was that it caused upset stomach, and I’ve really been meaning to read up on it. I’ve dealt with stomach issues for as long as I can remember, and just last month have started the process with a gastroenterologist to try to figure out what’s wrong. They brought up chromes as the worst case scenario, but it’s very unlikely. (So far it’s not an ulcer or bacteria) I purposely didn’t read up on it because I know I’m likely to scare myself into thinking the worst. It was really good for me to hear about it from someone who knows first hand. I’m glad you have figured out a lifestyle that works for you. Keep being strong, lady!
    carissajade recently posted…Around Austin: Fusebox Festival and “The Trees of Govalle”My Profile

    April 14, 2015 at 6:27 am
    • Reply suzlyfe

      hmmmm, sounds like you could have IBS, but I obviously can’t make that call! part of the great frustration lies in the unknown, and though to some it may feel that you are avoiding the issue, it is better that you are seeking PROFESSIONAL help rather than Web MD, aka the Bain of most doc’s existence. I hope that they figure it out soon…

      April 17, 2015 at 3:55 pm
  • Reply lindsay

    thanks for sharing this. I hate that they still don’t know how it’s caused. But at least there is an awareness now. THey thought I had it 3 years ago. Turns out it was a parasite. Ugh, either way, running to the bathroom and being sick is never fun on an everyday basis.

    April 14, 2015 at 6:33 am
    • Reply suzlyfe

      Well, I am glad for yoyrsake that it was a parasite! Still, yeah noooooo

      April 17, 2015 at 3:52 pm
  • Reply Sam @ The Running Graduate

    Thanks for posting this Suz! I really didn’t know much about Crohn’s. You are amazing for sharing your story and also seeming to kick Crohn’s butt!
    Sam @ The Running Graduate recently posted…Vermont Half Marathon Unplugged: Race RecapMy Profile

    April 14, 2015 at 6:40 am
    • Reply suzlyfe

      Well, it’s tried to kick my booty a few times, I thought I should return the favor!

      April 17, 2015 at 3:51 pm
  • Reply Erin @ Erin's Inside Job

    Sounds like such a great time! I remember learning all about it in pharm school. No bueno.
    Erin @ Erin’s Inside Job recently posted…What To Do When You Haven’t Trained For A RaceMy Profile

    April 14, 2015 at 7:13 am
    • Reply suzlyfe

      Because who wouldn’t want to feel like shutting their brains out alllllll the time, right?

      April 17, 2015 at 3:50 pm
  • Reply Sarah

    Again, super helpful and I appreciate it. On Saturday I ran with my athlete and she was going on and on about her meds and recent issues and I found myself being much more patient and “listening.” Helpful stuff here.
    Sarah recently posted…We’re All In This TogetherMy Profile

    April 14, 2015 at 7:27 am
    • Reply suzlyfe

      Sometimes? People just need you to listen. And to know that you aren’t going anywhere, even though the subject matter is unpleasant. I thank you on her behalf for just listening and being there!

      April 17, 2015 at 3:50 pm
  • Reply Erica { EricaDHouse.com }

    I am SO glad you are taking about this! I’ve always wondered. What it really is and how it effects you, because you seem to handle it all so well. I’ve heard it’s a nightmare though, so I knew there must have been a lot going on ‘behind the scenes.’ You’re a badass.
    Erica { EricaDHouse.com } recently posted…Catching Up: Pregnancy Weeks 1-19My Profile

    April 14, 2015 at 7:30 am
    • Reply suzlyfe

      We are both so alike—we have these chronic conditions but God help us if we let them take us over. To be honest, your pregnancy is giving me a lot of positivity—even the fact that you struggled (though I wish you hadn’t) is helping me so much. So thanks go back at you!

      April 17, 2015 at 3:48 pm
  • Reply Deborah @ Confessions of a Mother Runner

    oh my I never realized there were so many symptoms involved. Wow that’s so rough to go through as a young child and even now. The fact that you’ve achieved so many athletic feats of awesomeness despite all of this is down right impressive and inspiring. I thought you were pretty cool before but now I totally do! 🙂
    Deborah @ Confessions of a Mother Runner recently posted…Rock Your Core-Week 3My Profile

    April 14, 2015 at 7:40 am
    • Reply suzlyfe

      Dusts shoulder off. You are too sweet! Is my life or my disease easy to deal with? god no. would I ask for it? HA. But you know what? I never would have discovered running, this community, or likely even Alex without it. Sbut I would have loved to skip the fistulas!

      April 17, 2015 at 3:46 pm
  • Reply Salt

    One of my friends in high school had Crohn’s (I’m assuming they still do…we haven’t talked in years though) and I never knew too much about it so this was a great learning experience for me.

    I think you are a super hero. <3
    Salt recently posted…NJ Marathon Training Week 16 Recap {Taper Week 1}My Profile

    April 14, 2015 at 7:45 am
    • Reply suzlyfe

      We are all heroic in some way. If I can help someone (even just one), then I am happy.

      April 17, 2015 at 3:31 pm
  • Reply Pragati // Simple Medicine

    my husband has tried everything under the sun for this Crohn’s. I support him by allowing him to dictate the course of his treatment. It’s his body, and he knows when things are working and when they aren’t. Sometimes I think I know it all, but I don’t know his disease or how it makes him feel. One of my biggest ways of showing support is in the kitchen. Cooking him the foods that make him feel good, that fit with the diet he’s trying to follow or that he believes will make him feel better. Thanks for sharing, Susie!
    Pragati // Simple Medicine recently posted…Lunch Time FitnessMy Profile

    April 14, 2015 at 8:29 am
    • Reply suzlyfe

      Oh Pri, you are such a gem. And I can tell you right now how much you, your care, support, and unyielding love mean to him. I wish this was always the case!

      April 17, 2015 at 3:43 pm
  • Reply Sara @ lifebetweenthemiles

    Thanks for sharing more of your story and bringing awareness to this disease, which not too many people know a whole lot about unless they know/love someone with this disease! I had a friend in HS with it and it was really tough for her to deal with, so I feel for you and everyone who has to manage this. You are amazing my friend!! <3

    April 14, 2015 at 9:19 am
    • Reply suzlyfe

      Thank you, my dear friend. How is your old friend doing?

      April 17, 2015 at 3:42 pm
  • Reply Suzy

    Chrone’s has always been something that nobody really understands unless they’re surround by people who have been affected by it. My ex husband Jason’s best friend has it, and she reminds me a lot of you. Tiny white girl with super blonde hair. She had most of her digestive system cut out as a teenager and had a colonoscopy bag put in. I think the toughest part about anxiety and depression is that they are illnesses that we can’t SEE and we therefore struggle with the whole validation thing, and associated stigma. It’s fkn bullshit. Drives me crazy. And I could see that happen with Chrone’s too, in that it’s all happening on the inside which can be so isolating, and we all know that we need people. We need each other. The more aware we can be of all the “inside” diseases, the better. The better because then nobody feels so damn alone. Thanks for sharing all this, Suz!
    Suzy recently posted…Abraham Lincoln Had a Step MomMy Profile

    April 14, 2015 at 9:24 am
    • Reply suzlyfe

      Xoxoxo I think you are spot On. And I think that you are bringing up yet another aspect of this disease and the mind and body fuck that it is—the intersect of the visible and the invisible, and when the invisible becomes visible. When it can no longer be private. How is she doing now?

      April 17, 2015 at 3:41 pm
      • Reply Suzy

        To be honest, I’m not exactly sure how she is doing right now. Jason is my ex husband and she was his best childhood friend so when we split up, I kinda lost out on the updates and stuff. Booooo, divorce, boooooo.
        Suzy recently posted…Blended Family Friday: Tough to DigestMy Profile

        April 17, 2015 at 11:02 pm
  • Reply Mary

    Thanks for sharing your story. I thought your explanation of the disease and its symptoms were really clear while still keeping things somewhat humorous. Good to read.

    Your description of the symptoms that you have experienced is similar to mine. I appreciated seeing acid refux on your list. I don’t think most people talk about reflux as something that is part of Crohn’s disease. But it is something that I have experienced when my disease was/is pretty bad. At one point the GI doctor that was treating my Crohn’s swore that the acid reflux was not from Crohn’s disease but was from my diet. After about 9 months he finally took me seriously when I came into his office in tears after eating homemade banana bread and complaining about the reflux.

    Thanks for sharing! I enjoy your posts seeing how active you are while dealing with this disease.

    April 14, 2015 at 9:26 am
    • Reply suzlyfe

      Mary, thank you so much for commenting! How are you doing now? It is so difficult to find the right doctor who will believe you and treat YOUR disease, not what they think of as “Crohn’s”. I have largely been fortunate but, as I will talk about in the future, I’ve also gotten the “look” of well , you’re doing it to yourself! no…. Not choosing to be uncomfortable/not have a period! I hope that you might return and continue to comment!

      April 17, 2015 at 3:38 pm
  • Reply Laura @ This Runner's Recipes

    Thanks for sharing this – this is such an important post. While people talk a lot about gluten insensitivities, I think the real problems of Crohns and IBD go under the radar. It’s especially important for women to know about, for the exact reasons you pointed out (how our hormones affect it, amenorrhea, and iron deficiencies).
    Laura @ This Runner’s Recipes recently posted…What Do You Do When You Miss Your Goal?My Profile

    April 14, 2015 at 10:15 am
    • Reply suzlyfe

      I realized after the fact that I should have mentioned the Celiac aspect, but Celiac is such its own thing, as well. there is so much overlap in all of these diseases, yet they are so very different—like siblings.

      April 17, 2015 at 3:34 pm
  • Reply Gianna @ Run, Lift, Repeat

    Such a great post, and one I will be directing those to who ask me questions! Hit home with the reclusive part and hour by hour changing. I didn’t even realize until now how much I have isolated myself the past couple years. But also my poor BF has witnessed us sitting on the couch totally fine to me then shivering in pain soon after…and his despair not being able to do anything. He is a trooper and I always laugh when he does his daily “how is the belly feeling/how was going to the bathroom today” talk.
    Gianna @ Run, Lift, Repeat recently posted…Weight Watchers Week 11My Profile

    April 14, 2015 at 11:13 am
    • Reply suzlyfe

      Ugh I know. What I hate is that sometimes we might fight that others don’t believe us—when it hits from nowhere. Or if it dissipates quickly. And I’m glad that the last part might help you. Don’t stop living your life—just learn to be flexible.

      April 17, 2015 at 3:31 pm
  • Reply GiGi Eats

    Crohn’s Disease is a piece of shit disease that causes us to run to the toilet at the drop of a hat… And makes us double over in pain like someone is chopping up our insides.
    GiGi Eats recently posted…Getting Stuffed With Brad GouthroMy Profile

    April 14, 2015 at 11:24 am
    • Reply suzlyfe

      Piece of shit it certainly is. You said it.

      April 17, 2015 at 3:12 pm
  • Reply Sarah Rosenblatt

    We are sort of going through some of this with Joe… it looks like he might have IBS. Ever since he was a little kid, he gets these “episodes” of really bad stomach pain that usually ends in diarrhea (or sitting there with nothing happening). I always told him to go to a doctor, but he was stubborn and just tried to find ways to deal with it on his own. It seemed to be better if he didn’t eat breakfast and avoided too much sugar, especially early in the day. Anyway, it’s finally gotten to the point that he decided to go to a doctor (he had a particularly bad I-need-to-get-off-this-subway-right-now episode that convinced him) and he’s now on probiotics, which seem to help. Still working out the kinks, but we’ll get there!
    Anyway, thanks for all your posts on this. I’m going to share them (and Amber’s once I read through it) with him, too. I think part of why he didn’t want to go to a doctor for a long time is that it was embarrassing to him (poop, eew) but I’m glad he’s finally tackling it. You’ve gotta take care of yourself! Thanks, as always, for being so open- I love reading your blog!

    April 14, 2015 at 2:07 pm
    • Reply suzlyfe

      Oh Sarah, I hate to hear this! (ps I love you reading my blog too lol) please let me know what you all decide to do—and definitely send Joe to Amber or myself if he wants to talk about it. In my mind—you should be able to live your life, and ignoring the problem or tap dancing around it isn’t going to help! Diet is a huge part of it, yes, but there could be something else at work. And if that is the case—find out now!

      April 17, 2015 at 3:16 pm
  • Reply Ange @ Cowgirl Runs

    Thank you so much for sharing! Just looking at those symptoms is awful. I can’t imagine what a rough road it was from onset to diagnoses to finding treatment that worked for you.
    Ange @ Cowgirl Runs recently posted…When You Need a Quickie…My Profile

    April 14, 2015 at 2:22 pm
    • Reply suzlyfe

      And Ange, what is so terrible is that I was LUCKY. Some people go YEARS like this…

      April 17, 2015 at 3:17 pm
  • Reply Jess @hellotofit

    My uncle and my group ex director from undergrad has Crohns, and it’s SO interesting how different the disease is from person to person. Uncle can eat pretty much anything he wants, and I only remember one bad flare up where he was bed/toilet ridden for days during our beach trip, whereas my friend had to be pretty selective with her diet. Thanks for sharing the info!
    Jess @hellotofit recently posted…Link Love #13 and never too old for promMy Profile

    April 14, 2015 at 2:41 pm
    • Reply suzlyfe

      Oh my goodness, I find it fascinating—my body and the way it reacts to things is a completemy different animal from others. like my diet? Many people can’t even consider eating half of what I do!

      April 17, 2015 at 3:18 pm
  • Reply Julie @ Running in a Skirt

    You are such a fighter. Thank for writing this. While I knew some about the disease, not this much. Very education and inspiring to see what you go through on a daily basis.
    Julie @ Running in a Skirt recently posted…Shortcut Mushroom GalletteMy Profile

    April 14, 2015 at 2:42 pm
    • Reply suzlyfe

      I am glad to share, thoug. I wish there was no point (because there was no Crohns). But as the diagnosis is more common, we need to have some idea of what each other are going thru.

      April 17, 2015 at 3:21 pm
  • Reply Sam @ PancakeWarriors

    How crazy to read this … you even bring this disease to life. Going forward anytime someone asks me about Crones I will send them to this post. I hate to hear that you are in such pain and potentially panicked but you certainly don’t seem to let that run your life. Thank you for sharing all this with us – you continue to be more and more of an inspiration!
    Sam @ PancakeWarriors recently posted…Mother’s Day | Best Mom EverMy Profile

    April 14, 2015 at 3:36 pm
    • Reply suzlyfe

      thank you so much, Sam. I try not to let it run my life, though it certainly has tried before! But it’s my life, dammit!

      April 17, 2015 at 3:27 pm
  • Reply Mar @ Mar on the Run

    So proud of you for sharing your story. This is such good information. Love you friend!

    April 14, 2015 at 5:20 pm
    • Reply suzlyfe

      Thanks boo love you too!

      April 17, 2015 at 3:25 pm
  • Reply Anna @ Piper's Run

    What a crappy disease – no pun intended. My sister actually works with a drug company to help those without medical coverage get the meds they need (paid for) for Crohns. She know’s a lot about it but I sure don’t….and I only know two people who have it. Thanks for sharing such an important post.
    Anna @ Piper’s Run recently posted…Hamstring Update: Pain Free (so far) & Potty TrainingMy Profile

    April 14, 2015 at 5:52 pm
    • Reply suzlyfe

      I respect the pun—we use it often. Another favorite? Running teams called the “semi-colons”. When we are dealing with something like this, you must learn to laugh.

      April 17, 2015 at 3:24 pm
  • Reply Kerri McGrail

    I love your honesty and willingness to share your story! My sister’s best friend has chron’s and we went on a vacation together so I got a bit of an insight as to what it was about. I love how your story is informative, yet personal. I love how you don’t let something like this run your life. Great post!

    April 14, 2015 at 7:20 pm
    • Reply suzlyfe

      ThAnn you so much for your support! It is such a weird thing, this Crohn’s business. I hope she is doing better!

      April 17, 2015 at 3:23 pm
  • Reply Michele @ paleorunningmomma

    Ugh so so terrible! As unpleasant as it is to think and talk about the details it’s so important to get the word out so people understand the reality. So sorry for your experience 🙁
    Michele @ paleorunningmomma recently posted…10 Thoughts on Yoga for RunnersMy Profile

    April 14, 2015 at 7:41 pm
    • Reply suzlyfe

      Thank you Michele. You’ve been through a tough ride, too. I’m just glad that we are both at places that we are doing well (knock wood) and able to help others.

      April 17, 2015 at 3:29 pm
  • Reply Amber

    Suz, first off, I AM HONORED you even mentioned my name/blog in your post, excuse me while I fangirl hardcore a bit.
    SECOND – you own your condition like no other, and I applaud your bravery and honesty with your condition, ALL aspects of it, I was aware of what Crohn’s is, because I know two people with it, but one was able to have intestine removed to alleviate it. Your positive attitude helps me make it through some of my tough days
    Amber recently posted…Protein Packed PizzaMy Profile

    April 14, 2015 at 7:49 pm
    • Reply suzlyfe

      You are too modest—and you have a fabulous approach and way of discussing your issues. I am so happy that we can be points of postivity for each other!

      April 17, 2015 at 3:12 pm
  • Reply Jill

    This was such an excellent post. Crohns is a real bastard. I think what is so hard when it comes to treatment is that your body is essentially attacking itself and they don’t know how to completely turn that off. I didn’t realize all the other systems (besides just the digestive) that it affects too. I’m so sorry for everything you had to go through with this. The abcess itself sounds absolutely terrible. If you ever come to hang out with me and get sick I will carry you home!!
    As for the IBS I had a period where my symptoms were pretty severe and I def became reclusive Bc I didn’t know when they would strike and had no idea what was wrong. As I’ve gotten older I’ve found ways to manage it most of the time but you’re right times of stress completely wreak havoc.
    Jill recently posted…Step by StepMy Profile

    April 14, 2015 at 8:04 pm
    • Reply suzlyfe

      Well I hope that when we do hang out the only carrying will be for funsies and not out of necessity! And you are spot on: how do we dial down something that is so vital to your body to juuuust the right amount? And the reclusiveness is terrible— some literally disappear. I was so lucky to have such an incredible support system and the horses—i COULDN’T hide if I wanted to be with them. But the constant questions and worry from others can be terrifying, so I understand it completely.

      April 17, 2015 at 3:10 pm
  • Reply Bri

    Thank you for sharing this, Susie. I had no idea how much shittiness was involved with this disease. You are amazing xo
    Bri recently posted…#WorkoutWednesday: Yoga Strength Fusion workoutMy Profile

    April 15, 2015 at 8:04 am
    • Reply suzlyfe

      Boy, shitiness is the right word for it! Thank you so much, Bri.

      April 17, 2015 at 3:05 pm
  • Reply Beth @ Running with the Sunrise

    A big, ginormous hug for you, Suz. Thank you so much for being brutally honest and for being brave enough to let everyone in on what you go through. I sincerely hope that your current regimen helps keep you from ever having a flare up again. And thanks again for this wonderful, informative post!
    Beth @ Running with the Sunrise recently posted…How to Write Your Own Running Training PlanMy Profile

    April 15, 2015 at 8:12 am
    • Reply suzlyfe

      (hug received and appreciated) Alex and I have been talking a lot about what the future hold for me and my disease (and I’ll talk about it more soon). we know this can’t necessar ily hold forever, we are just thankful for each day and experience that I get.

      April 17, 2015 at 3:04 pm
  • Reply Erin@BeetsPerMinute

    While I don’t have any firsthand experience with Crohns I did lose my father to colon cancer nearly four years ago and I know the hell he went through while it was undiagnosed (due to doctors literally having no clue what was wrong for nearly a year). Anything to do with digestion or intestines just sounds awful. It’s great that you’re so comfortable educating people about it, you will surely help a lot of people.
    Erin@BeetsPerMinute recently posted…Super Healthy Edible Cookie DoughMy Profile

    April 15, 2015 at 8:55 am
    • Reply suzlyfe

      Oh, Erin, I am so sorry to hear that. My grandmother died of colon cancer—i never got to meet her. What’s terrible with these types of diseases is that we don’t know if it’s a bellyache or otherwise—often til it is too late.

      April 17, 2015 at 2:58 pm
  • Reply Farrah

    Susie, this post is perfect. :O I have a post on Crohn’s disease scheduled somewhere in May, and I’m thinking I should probably just link to your articles, since you cover it wayyy better + in more depth! <3
    Farrah recently posted…Review: Journey To Healthy EatingMy Profile

    April 15, 2015 at 9:36 am
    • Reply suzlyfe

      Hahaha well believe you me, there is a glut of topics within the subject, so I’m sure you will still have plenty to talk about!

      April 17, 2015 at 4:01 pm
  • Reply Montana

    Very informative! I knew you and another woman I know have it but I never knew what it was or how it affected you until I read this. For the record, I think you’re living a fabulous life and doing very well managing your symptoms as best you can. I wish for a cure in the near future so people don’t have to go through this anymore!
    Montana recently posted…Race Recap: Iron Girl Clearwater Half MarathonMy Profile

    April 15, 2015 at 10:55 am
    • Reply suzlyfe

      Thank you, Montana! I wish for a cure as well. If only so that others might not have to deal with it. But I was actually talking to Alex about this last night: I feel so fortunate to have the care and love and support that I do.

      April 17, 2015 at 3:01 pm
  • Reply neil@neilshealthymeals.com

    Well written and I was absorbed from start to finish Susie. I only knew of some of the symptoms, not the whole bag of dreadful stuff you have to put up with. No wonder you’re a fighter! 🙂
    neil@neilshealthymeals.com recently posted…What’s NOT Cooking #12My Profile

    April 16, 2015 at 12:20 am
    • Reply suzlyfe

      Thanks my friend. Yeah, it isn’t so pleasant, really. But I suppose it could always be worse, right? like Igor in Mel Brooks Young Frankenstein—could be worse? HOW? Could be raining (cue lightning, thunder, downpour). While Crohn’s has the potential to take away so much in my life, it has given me an extraordinary perspective that I wouldn’t trade.

      April 17, 2015 at 2:56 pm
  • Reply Guilt Free Froyo and Other Awesomeness - Suzlyfe

    […] What is Crohn’s Disease? (Living with Crohn’s Pt 2) […]

    April 16, 2015 at 5:24 am
  • Reply Lauren @ ihadabiglunch

    Thank you for delving deeper into this disease. My old basketball coach in high school used to spend time in the hospital due to particularly painful flareups and it didn’t make sense to me at the time. You are a WARRIOR. There’s no other way to describe it…
    Lauren @ ihadabiglunch recently posted…Finding Healthy: It’s a long journey. You can’t be afraid to fall on your faceMy Profile

    April 16, 2015 at 10:28 pm
    • Reply suzlyfe

      Aw honey you are so sweet. I hate to hear that about your coach, though. How are they doing now?

      April 17, 2015 at 2:53 pm
  • Reply Debbie Bridges

    Reading this was like looking in the mirror. I am thankful that my crohns is contained to,where my small intestine meets my large intestine. I have had two surgeries, the most recent a little over a year ago, to remove the diseased area. I have had this disease for 34 years and yes while there is no cure, I am amazed at how far the treatment options have advanced. My first surgery which was 10 years after my DX required so much of healthy intestine both large and small to be removed. The second surgery which was 23 years later took only a minimal amount of healthy intestine. This time we are proactively using the biological Cimzia to keep my immune system quiet. One year later my colonoscopy showed no signs of active crohns although I do have to see my surgeon next week for something else that showed up on colonoscopy could be hemorrhoid or fistula. It’s bizarre how this disease even without active inflammation still controls me 24/7. I have to follow my morning ritual otherwise I stress out about it which makes it worse. The night sweats and restless sleep and add in menopause sweet baby Jesus and with crohns we need sleep so our body can heal. The recluse part of life, it sucks. I don’t socialize because as you mention you never know when the plumbing is going to backfire on you. I know where bathrooms are located on some of my most common commutes and I never enter a restaurant, store or mall without first mentally noting where the rest rooms are. And the gas, OMG sometimes I drive myself from the room! Family is so important but my biggest supporter and loudest voice is myself. I am the hardest critic and I am trying to change that and be my biggest cheerleader instead. I am not getting mad at what I can’t do anymore and instead being grateful of what I have and can do.

    April 20, 2015 at 7:21 pm
    • Reply suzlyfe

      Debbie, you always inspire me with your outlook on your disease and life. I love your practice of gratitude, and I truly hope that you are able to find inspiration in yourself as I do in you. You are such a fighter, and such a lady.
      It took me so long to get to the point that I feel that Crohn’s doesn’t control me, but even when I finally get to the point that I feel that way (that I am in the driver’s seat), I realize that I still think about it before I make certain decisions, or I might even use it as a crutch. What is the worst is when I realize that I am covering up something that might be wrong simply because it might be Crohn’s (like being overly tired, or whatever), or thinking that it might be Crohn’s when it isn’t. The best gift possible for me, and I know for you, is having a family and that support system that just means everything.
      I’m always here for you, too. Always.

      April 21, 2015 at 12:49 pm

    Leave a Reply

    CommentLuv badge