Photo by Steven Meyer.

A Few Things You Should Know About Crohn's Disease

Date: May 23, 2012 at 9:03 am- by Ali- Comment(s): 199

Look, I’m just as tired of writing about being sick as you probably are of reading about it.

That grammar felt wrong. My brain hurts. I’m sorry.

Let me take this time to show you how huge Tyler is:

Tyler, slow down with the growing! You're a monster!

I gave him that outfit. It has a monkey face on the butt.

Anyway. I don’t want to write about this dumb Crohn’s stuff anymore, but it’s unfortunately a big ol’ part of my life at the moment, so let’s talk it out a bit.

When people hear I have Crohn’s disease, they tend to make several assumptions:

  • That I go to the bathroom a lot. (True.)
  • That I have “bad stomachaches.” (True, but let’s change “bad” to “F-ing awful.)
  • That I have “Chron’s disease.” (So false. Please stop misspelling the name of this disease, especially if you have it!)

But since that doesn’t sum it all up, let me help you out by sharing a few more of my own insights with you.

And remember, I’m no doctor. The only medical degree I’m worthy of possessing is a Ph.D in frozen yogurt science, and I don’t even know where I’m supposed to go to major in that. Directly to 16 Handles? Or is there a higher power I should seek out?

THIS IS MY HAPPY PLACE.

Everything I write about here is based on my experiences, my advice from doctors and my research from various sources. Take it all with an easily-digestible grain of salt.

You might have it — but you probably don’t. So you had to go to the bathroom after a weekend-long binge-fest? Raw vegetables don’t agree with your stomach and salad is your enemy? That’s fine, and that sucks. All digestive issues suck.

But just because you had to go to the bathroom urgently once or twice doesn’t mean you “definitely have Crohn’s.” If you truly think you may have a digestive disease, please go to the doctor. Get a colonoscopy. Drink some barium. Have a CT scan or an Upper or Lower GI. Do all those things, and then we can compare symptoms. Because I’m sorry, I can sympathize, but at some point you comparing your cramps to Crohn’s is OMG so frustrating.

I am not sick because I like running. I always welcome feedback and advice, truly I do. But if one more person tries to convince me I’m “sick because I’ve been working out,” I’m going to go ahead and punch something…or someone. So watch out.

Yes, I enjoy working out. Yes, I do that a lot, and yes, I am aware of that. No, I am not an idiot. (Really, I’m not. I just play one on the Internet.) Crohn’s disease and exercise, according to every doctor I’ve ever seen and all the current research I’ve read, are not intricately intertwined.

Obviously if I’m running myself ragged my body won’t recover, and having Crohn’s on top of that will tear me down. That, we can probably all agree, is something of a fact. But I’m not currently having a flare-up because of any exercise I’ve been doing.

Photo by Steven Meyer.

What you read on my blog isn’t my full life — just because I say I went to a Chisel class doesn’t mean I went balls-to-the-wall hardcore with super-heavy weights, jumping around on top of things all Parkour-style. I know when to tone it down and I know which exercises my body can (sitting on a spin bike and taking it easy) and cannot (fast running, boo) handle.

Also, each day — each hour, each minute — during a flare-up is different. On Sunday, I felt OK enough to go out for a run. Yesterday and today, I couldn’t even fathom the thought of putting on sneakers or a sports bra. It’s constantly changing and totally unpredictable, so I don’t try to plan workouts because I know they may not happen and I don’t want to get discouraged.

Ultimately, exercise makes me feel good and most times it’s the one thing that keeps my mind off the fact that I’m flaring. So please, stop telling me to stop sweating. I did absolutely nothing yesterday beyond parking my ass on the couch and leaving a serious butt imprint. I wanted to spin, but I didn’t. Instead, I drank juice all day and was as lazy as possible. I didn’t even make a Sick Day To-Do List. Look at me, all chill and stuff.

Lunch was beet juice. Surprisingly delicious, plus it matched my nails.

As comfortable as I am having this disease and talking about it, it’s still so embarrassing. Here’s an example: I spent the majority of my afternoon at work on Monday in the bathroom. The public bathroom. The public bathroom with just three, not-at-all-private stalls. The public bathroom with just three stalls at a company that is 90 percent female, and where everyone knows each other, and what shoes you’re wearing.

In other words, there is often no privacy, and that can make discomfort even worse. Hence why I stayed home from work on Tuesday. Crohn’s is not a quiet disease. I wish all bathroom stalls were soundproof.

If I say I need the bathroom, get the heck out. Don’t finish up your shower, don’t start tweezing your eyebrows and tell me you’ll “just be a sec.” Get out. Now. My turn.

I will talk to anyone about exactly what is happening in the bathroom — except Brian.

"I don't wanna talk about it!"

I’m pretty sure the majority of what he knows about my symptoms is from overhearing it in our tiny NYC apartment (that sucks for me, and probably for him as well) and from reading about it on the blog. And maybe he’s Googled it before or something. I don’t know. I don’t ask.

I’m open to discussing things quite graphically with my friends, my family and total strangers I meet on the streets of New York. But describe these things for Brian, who I live with? No thanks. Not in person. Maybe I’ll explain it all to him in an email sometime.

The worst part about a flare-up is the stomach stuff — but there are other side effects I forget about every single time. I always forget about the fevers (103.3 last night) and the night sweats. I forget about the crazy joint aching, which is especially evident in my upper back. I also forget about the fatigue, and am constantly wondering why I’m so tired and exhausted after doing things that are normally only semi-strenuous (you know, like dancing at a wedding or walking up the subway stairs).

EVERYBODY DANCE NOW. Crohn's Crohn's Crohn's!

I don’t know what it’s like not to have Crohn’s. Whenever people ask what it’s like living with Crohn’s, I’m stumped about how to answer. Because for the rest of you, what’s it like not having Crohn’s? What’s a normal stomachache like? Is it the same for both of us?

I’ve had this disease since I was 7, so this is normal for me. The flare-ups aren’t normal, but on the day-to-day, I’m just used to it all. I generally have more trouble digesting foods than “normal” people, and I can never just wake up and work out — I need ample bathroom time first. Beyond that, living with Crohn’s is just…fine I guess.

I am afraid Brian is going to break up with me because he’s sick of dealing with all this. I have literally been sick almost continuously since Brian and I started dating. I worry that one day he’s going to decide I’m too high maintenance and he’s not going to want to deal with it anymore.

Lately I have been feeling extremely guilty about being sick. When I get like this, I constantly worry about bringing people down — when I’m the girl who has to leave dinner early, or I’m the one not ordering a drink at the bar, or I’m cooped up in the church bathroom 30 seconds before I have to Maid of Honor down the aisle. I hate the thought that my sickness can in any way affect the people around me. It doesn’t seem fair to them.

I’m actually not stressed right now. I’m not excitingly busy, either. With the madness of spring behind me, I’m loving looking at my mostly-empty June calendar. I’m learning not to sweat the small stuff (even though all sweat is good sweat) and trying to be better about sanely handling the not-so-small stuff.

How can I be stressed with this little man in my life?!

I have no intention of “beating” Crohn’s disease. I realize — and have to respect — that this is a chronic illness that doesn’t currently have a cure. As much as I’d like to bypass this flare-up and then announce to everyone that, “I beat Crohn’s,” I know that’s not a reality. More flare-ups may always happen.

I’m still figuring it out. Even though I’ve had this disease for 20 years now (whoa), there’s still so much for me to learn and I feel pretty clueless most times. In the past, I’ve had major success with Prednisone, but after the last time, when it made me into a madwoman, I don’t want to resort to that treatment again. I’m still getting Remicade every eight weeks — that’s where I’m hanging out now, in fact.

My giraffe came with me today. He is on my necklace. His name is…Giraffe, I guess. I don't know. I hadn't named him.

I would really love to be able to maintain this disease with a change in diet rather than being on so many drugs. Since my diagnosis, I’ve tried a ton of various drug cocktails, including Methotrexate, Lialda, Asacol, Prednisone, Remicade, 6 MP and more. They all have side effects and almost none of them have been tested for long-term effects. That scares me.

So right now, I’m juicing.

That is Brian's man hand. Not mine. Though, really, my hands are quite mannish and are probably the same size as his.

It’s only been 24 hours, but so far the juicing thing is interesting. My stomach doesn’t feel any better, but I did realize last night that despite being sick, I still felt I had more energy than normal. The goal is to fill my body with lots of nutrients, but unlike consuming raw vegetables and leafy stuff, this should be easier for my stomach to digest.

I don’t have a plan with the juicing. I’m not doing a “fast” or a “cleanse,” I’m just trying to give my body a break by not filling it with crap (for once). Breakfast yesterday was fruit juice of some sort, lunch was carrot and beet juice, dinner was a green juice and breakfast today was a juice made with pineapple, bananas and strawberries. I also think Brian has been sneaking spinach and kale into every single one of these.

I’m hoping that between the Remicade and the healthy stuff, I’ll be on the mend soon, and then I’ll figure out a plan with a new doctor. Doctors tend to want to pump me full of drugs, and I want to find a doctor who has an open mind instead of an over-active prescription pad.

I think that’s all.

Any questions?

Posted in Crohn's disease and tagged , -

199 Responses to "A Few Things You Should Know About Crohn's Disease"

I’ve said it before, but kudos on being able to express all sides of your thoughts on a subject. You have a gift for engaging the reader, Ali, even with unpleasant topics. Thanks for always being so real, that’s why I love your blog.

My best friend has Crohn’s disease and recently had to have emergency surgery to fix a blockage in her intestine. It’s a tough disease – but like you, she makes the most of it. I know that her stomach with sometimes make funny gurgley sounds. We laugh about it. That’s really all you can do. Stay strong Alie, and thanks for sharing your story!

Feel better!! Your juice looks delicious BTW.

My cousin has battled this for years, and all I can say is I am sorry.
But, I love that you handle it with honesty and humor. And Brian is alucky guy to have you!

I didn`t know Crohn`s before discovering your blog, but I think it is impressive how positive you handle it! You are awesome, really! I`m a baby when it comes to any kind of diseases, sicknesses, pain, etc. – I hope you feel better very, very soon!

I have absolutely visited a different floor of my building on a particularly bad GI digestion day so that I could make as many uh, noises as I wanted without fear of my shoes being seen.

Just sayin’.

I used to work in Ali’s office building and one thing that sucked about MY floor was that you needed to scan your badge to get in the bathrooms! Sucked especially when you might have forgotten it at home…

Feel better, Ali!

I do the same!! I know every bathroom at work and know which ones are usally empty and go to the floors where they don’t know me if I’m too noisy!

Gabriella says: May 23, 2012 at 9:36 am

If it makes you feel *any* better, I’m very jealous of all of the juices and your juicer. Most people like to be “know it all’s” about things they know nothing about. When I exercise in a flare (I have a chronic bladder disorder that leaves me with aches, fevers, and peeing all day…think the worst UTI you can image + flu), I typically feel BETTER during the exercise than before or after. It makes me want to be at the gym all day….my friends and family think I’m insane, but you know your body best with this disease and most people will never have a clue what you’re going through. Feel better!

Props to you for bringing awareness to this disease, in your own funny and candid way. You definitely dispelled a few misconceptions for me!

I honestly can’t imagine what you feel like on a daily basis and I probably never will. But I can still give you so much credit for staying so positive and strong on most days. I hope some of the other options you’re looking into, juicing or other meds or even a new doctor start getting you back in the fewer flare ups direction. :)

I hope today is a better day

1. I’d be willing to bet that your Crohn’s would be worse if you weren’t in the physical shape you are in. Because this is a chronic disease that you deal with in one way or another every single day, you need to have an outlet that makes you happy. I am firm believer that your mental state of mind has a huge effect on your physical well being. So if you want to work out, do it sister.
2. I think Brian is so good to/for you! Plus he has nice man hands. So there’s that. I hope you guys are in it for the long haul because you can tell from the tone of your posts that he is able to calm you down and help with your….ummm….exciting business.
3. Your shellacked (??) manicure is really pretty. So you have that going for you.
And finally, most importantly, can you tell me what episodes of 90210 were on yesterday? It’s been a while since my last fix.

Good for Brian for sneaking kale and spinach into your juices. Juicing will be SO great for you because your body doesn’t use all its energy trying to digest it, so you get to absorb all the nutrients and their beneficial (and healing) properties.. When my stomach condition gets really bad, juice usually helps give me a little break.

You do a great job of bring awareness to the disease and dispelling all those Crohn’s myths. And I feel ya on the, “should you excercise” thing. I know its no comparison, but I have a vascular disease in my left leg. Yep, just the left, not the right, and people will approach me at races or in the locker room and give me “tips” and “tricks” on how to maintain swelling and such, or ask me about the discoloring and if it hurts when I run. “Should you run like that? Or do you need compression all the time?” Yeah, I was born with it people, it ain’t going no where! I think you are doing great! Keep it up!

I can totally relate and also posted something similar on my blog about UC. Like you, I talk about it often with my friends (in graphic detail), but also wanted to clarify some things with them and others. http://someonewillappreciate.blogspot.com/2012/04/my-uc.html

Ali, I don’t even know you, but you’re awesome. My brother had colitis (and sometimes still has issues since he’s missing his large intestine!) when we were little, and while I don’t know what these diseases are like first hand, I remember how terrible it was for him. You have such a positive outlook on life and Crohn’s, and you’re such an inspiration!

Also, Tyler is adorable! I became an aunt a year ago and it’s kind of the best thing ever!

Hope you feel better soon!!!

Sorry Crohn’s is so sucky:( Have you ever tried adding coconut oil into your diet to help relieve your symptoms? Do a quick google search and read about it if you haven’t already. I don’t have Crohn’s, but I use Nutiva virgin coconut oil everyday for other health benefits. Maybe it would be worth a try for you?? Feel better!

Oh no, Ali! I’m so sorry that you have to deal with this but you are such a tough girl and you handle it with so much grace.

Yvette Urteaga says: May 23, 2012 at 10:12 am

Ali,

I admire your courage to share the details of of “Chrons” flare up. I hope that you find a doctor that is willing to work with you to find a solution that will help you long term. P.S. Tyler is the cutest baby ever!

I hope you feel better soon.

Thank you so much for sharing your story. I have family member (not a close one) with Crohn’s and she had a flare up right around my wedding and did not come. My family understood but I didn’t. I didn’t know how a “stomach ache” could keep her from coming and I was hurt that I wasn’t worth it to her. That was pretty ignorant of me. After reading your story, I’m understanding a bit more. Thanks, Ali.

i had a friend in high school with crohn’s. i remember her holding her stomach in pain after almost every time she ate. one time is especially vivid, when she sat on the stairs inside our friend’s house and couldn’t get up because her stomach hurt so bad. it seems so rough but you seem to handle it the best you can.

This is such a brave post. And frankly I do think you beat Crohn’s on a daily basis – you ran a marathon, remember?

AND you know how to spell it!

great post, friend :) It’s real and you and I dig it, even though I’m sorry you’re going through another flare-up. I still can’t imagine what it’s like to live with Crohn’s every day and think you handle it amazingly well.

Also, now I’m really interested in any research on juice and Crohn’s flare-ups… I wonder if there is any. Just don’t forget protein and fat in your juices/smoothies – you need that too!

Sorry you are still feeling crummy. Thank you for sharing your story and I absolutely love your attitude! Stay strong because strong=sexy!

I hope you feel better and I’m really impressed with your approach and attitude. I understand the frustration with advice from others. I have chronic migraine headaches. I have finally found the right combination of diet, exercise, medication and stress management that keeps me down to three headaches a month (glorious!) However, I”m 49–so um, its taken awhile. I can’t tell you how often I wanted to punch someone when they would say, ‘drink more water’ or ‘stop running’ and your headaches will get better.

I think it’s so inspiring that you stay so positive:) I hope you are able to find some answers with a new doctor that will help you get some relief:)

I have Crohn’s, too, and I’ve taken Lialda, Pentasa, Prednisone, Entocort, Imuran, and now Remicade (which is my wonder drug). My least-fave phrase that people ask is, “Have you ever tried (insert well-meaning but obnoxious ‘miracle cure’)…”
And to be truthful, working out is the one thing that really helps my Crohn’s feel better. It makes my body feel stronger, and clears my mind. I love reading your blog, and I can relate to your crappy Crohn’s days. You’r positive spin on life helps me stay positive about my own crappy Crohn’s days. Hope this flare goes away soon!!

Aside from un-solicited advice, I get really annoyed at people who self-diagnose that they have Crohns, UC, of Celiac’s. Then preach about what I should be eating.

No questions from me, just a “thank you,” for being so open about realities of your disease and reminding us how easy it is to make assumptions/judge others without really thinking understanding the journey they’ve endured.

Keep on juicin’ on…

This is a phenomenal post. Thank you for writing and being so honest. Your attitude is awesome and inspiring. Good luck with the juices and doctor hunting.

Thanks for posting info about Crohn’s. I have a friend with Crohn’s and while I had a basic idea of it, your very candid post helped me learn more about what you (and my friend) go through.
I think it is great that you know yourself and that exercise will make you feel better on certain days when others would just take it easy.

Amen Sister!!!! A postivie attitude and a plan is all you need to deal with everything event he shitty stuff :)

oh, and ps – don’t feel guilty about being sick. you’re not bringing anyone down. would you feel like that if your friend was sick? nah, i’m sure you wouldn’t care at all, and you’d do everything for that friend. our friends love us because of who were are – which includes our Crohn’s! :)

i love me some beet juice, but the next few times you poop, your poop will probably be red – not blood red from crohns, but from the beets! it happened to me, and i thought oh geez, i’m colitis’ bitch today, but alas, it was from juicing!

AliOnTheRun says: May 23, 2012 at 10:49 am

Haha yup ;)

Ali,
I’m surprised more of your readers aren’t runners with Crohn’s disease (which I am)! While my Crohn’s isn’t super bad, I feel like you summed everything up so well here! My doctor actually just suggested that some of my pain might be exercise-induced ischemic bowel and that I should try running with lower intensity and for shorter time periods. I pretty much told her that was not super likely. It’s so helpful to hear about someone else who has so much of this in common. Keep up the great work and thanks!

I appreicate your poop and Crohn’s related posts! I’m actually going through a “let’s try and figure out what’s wrong with you” phase, and even though it sucks, it’s nice to read about someone else who has their own set of bathroom issues and is open to talk about it.

And I know what you mean about feeling guilty – my doctor had me take out dairy for a few weeks to see if that’s part of the issue (though he doesn’t think it is), and I feel guilty for all the foods I have to turn down, and how my cooking has changed – esp. because my husband is a cheese fiend. But your overall awesome personality out-weighs the GI problems and inconveniences it may cause others, I’m sure.

I know you’re in NYC and a trip to NJ is probably a bit much for a Dr.’s visit, but if you’re ever open to it, I would suggest checking out Dr. Habba – he’s really great.

I hope you’re able to sweat(aside from at night) and feel better soon!

My doc told me to try cutting out dairy except yogurt because it’s good for the gut. The thing is I’m finding most vegan dairy products contain carrageenan which has been studied and shows its bad for people with IBS and crohn’s as it aggravates our guts.

Ali- first of all I’m sorry that you have to deal with this, but regarding the feeling guilty, seriously don’t! My fiance is a type 1 diabetic, which is obviously really difficult, but I have never felt resentful toward him for having it. If anything, I love him more. He somehow still has such a positive attitude (like you!), and he is a better person for it. He has taught me to appreciate things and enjoy life more than I was. He did an Ironman to raise money for diabetes research and to show other diabetics that he can still do amazing things despite the disease. I am scared of what may happen to him later in life, and of course I wish he didn’t have the disease, but it makes him who he is. Keep fighting and keep smiling :)

Hugs. (Although, I know you didn’t write this post to gain sympathy or hugs, but I will still give you a wireless hug). And I don’t have Crohn’s, but I can relate to non runners and non-workouters always blame all sickness on working out. It kills me. No people, working out makes us all feel better. GET THE NET.

PS: Baby Elliot’s Thanksgiving outfit had a turkey on the butt, just like Tyler’s monkey onesie. LOVE!!!!

I got my shirts in the mail yesterday. They are really great quality, I am so impressed! Thank you (and thanks Brian)!!!

As I tried on the shirts I realized that your blog has become one of my best coping mechanisms for my own shitty immune system and intestinal tract.

THANK YOU for that!

oh also, I got a juice a few months ago while having a huge flare and training for hte Boston Marathon. I watched the movie “Fat, SIck, and Nearly Dead” and if you haven’t seen it you might want, here’s a link: http://www.fatsickandnearlydead.com/

AliOnTheRun says: May 23, 2012 at 11:33 am

Yes, I saw it! That’s actually what inspired Brian to get a juicer. Plus, the guy in it, Joe, had an autoimmune disorder and juicing helped him. Crohn’s is an autoimmune disease, too, so fingers crossed his method works for me, if only in the short term!

Excellent, yah, I haven’t done a real fast, but just supplementing has reduced my symptoms (like achinessa and fevers). Keep it up!

I saw that and wanted to dust off my parents old juicer, does it take a few days for your gut to adjust, I would love to do a morning juice to see if it helps with my energy. Food Inc was also good. My doc said juicing would be good since fiber can aggravate crohn’s at times and it takes out the fiber, I’m just afraid I’ll be stuck at home running to the bathroom for a week till my gut adjusts!

Jessica says: May 23, 2012 at 11:28 am

This post came at a great time. My third-world-country-nasty-water-induced intestinal sickness has turned into a multi-week fiasco that’s wearing me down pretty quickly. For the past week, I’ve read your blog and thought, “Jesus, she is freaking superhuman if she can do all that when my big accomplishment for the day is showering.” It doesn’t sound like much, but thanks for being human.

I start a new (FOR REAL!) job next week, and I shudder to think what it’s going to be like if I’m still this sick. Lucky for me I’m a scientist, and well, there aren’t many women in my field. I’ll just hope there aren’t secretaries in the same hallway to share a bathroom with!

I think what a lot of people don’t understand about exercising when ‘sick’ is that sometimes getting out of the house with other people and moving around is mentally the best thing you can do. Whenever I had a cold or the flu growing up my dad insisted that we take walks and bike rides. It feels good to get out of your own sickness.

So I think after this last year, you’ve earned yourself a ton of good health karma, and hopefully that means that after this round, you will feel great for a long long time! Sending lots of positive healing energy your way!

So I have been reading your blog since about the time you ran the marathon and rarely (never) comment (don’t hate me) but posts like THIS are why I love your blog so much! You are so honest without being preachy and I love your style of writing. I’m a lot like you – people think I work out too much, but I’m (also) not an idiot and I know my limits and what my body can/can’t handle. I hope the flare-up takes it’s sorry ass out of town soon and that you don’t have to deal with another one for a while. (And honestly – I think the BF is in it for the long haul – when they see you at your worst, they’re usually keepers!) :)

About the juicing – I did a 3-day cleanse because I was curious and aside from being FREEZING the entire 3-days, it really does give you a lot of energy and load your body with nutrients. The reason juicing is so effective is that it absorbs into your bloodstream a lot faster than if you have to digest the fruit/veggies so I say keep juicing! Do you have a Breville? They’re amazing!

Hi Ali – sorry you’re flaring! I have Crohn’s disease, too, though not for as long as you have. And it sounds like our experience of it is different (I find that with a lot of people with the disease). But, I’ve been wanting to tell you that almost two years ago, after much debate and dragging my feet, I decided to cut gluten out of my diet. I noticed a difference after just one day! And though I am (or was) a total carb junkie, it really hasn’t been as difficult as I anticipated, partly because I feel so much better. I know that’s not the solution for everyone (and yes, I’m still on meds, so it’s not even a total solution), but I just wanted to offer you my experience for what it’s worth to you. I hope you find a doctor and way of living with Crohn’s that works for you! Also, I’d be glad to talk more about my decision, if you’re interested, feel free to email me.

Honey, stay strong and do what’s best for you.
I wasn’t going to post anything but I wanted to say something that I hope my help assuage your fears (at least a little) about Brian. I met my now fiance just before my Crohns started to act up, beginning one of the worst school years of my life. In the first days and months of us dating, I started a flare and went through multiple major family traumas. this is all leading up to the second semester of school, when I lost 25 lbs and admitted myself for a night in the hospital ended up in the hospital. My weight has been down and down and I’ve fought it up and we’ve been long distance for the past 1.5 years. And for all my issues physically and mentally, he has stood by me and loves me.
I recently talked to someone who dated a girl with Crohns for several years and dearly loved her but she let herself become a “victim” of it and blamed him for her own insecurities. They didn’t make it. (it’s a longer story than this but this post is getting ridic).
You and I seem to have very similar attitudes towards our disease and it appears that our men are the saintly types who are also very similar. Brian loves you. You just moved in together. This would not occur if he wasn’t serious about you.
If he puts up with the Crohns, “real life” problems will be a cinch! But keep being you, that’s why he’s there, and there will come a time when you will have to take care of him.
You probably know all of this, but I just hope that something I said could help. We will always live with this disease, but just as every flare day is different, there is always the possibility that the next day will be better.

Good luck.

Ali, I love your blog and love your honesty. I’m really pulling for this latest flare to leave you alone sooner rather than later.

Please do not worry a second about how your disease affects others – your family and friends love you for who you are, side effects and all, and all they want is for you to NOT be in pain.

Ummmm…on that note, I am a random reader, so I know this comes off a little stalker-y. Still. Yours is one of my favorite blogs, and I’m wishing you the very best.

Jessica says: May 23, 2012 at 11:59 am

Ali, way to be brave and talk about this in the most public of spaces. I really gotta commend you on it.

I don’t know if you’re hooked up with a Crohn’s community of any sort already, but a web site called Crohnology has really been awesome for me to talk to others about different treatments, symptoms, and just general Crohnsy stuff, sorta like a Facebook for Crohn’s (I don’t work for them but am definitely a fan). There’s even a thread on juicing! I’ve also gotten to chat with other Crohn’s affected trail runners on nutrition and other stuff, and it’s helped me immensely. Check it out if you’re curious.

Here’s to a speedy Remicade-fueled recovery, lady.

I never respond to posts but it’s as if you took my feelings and put them on paper (or the internet). I have IBD as well (ulcerative colitis, not Crohn’s) and am currently in remission. However I dread those times when you know a flare-up is a comin’. It feels like life gets put on hold and you can’t go about your day as normal, like needing to know where the closest bathroom is at ALL times. It sounds like you have a great support system, which I believe is a crucial part of “treatment.” Plus, I swear that holding a baby is incredibly therapeutic (just ask my brother how many times I tried kidnapping my niece!).

I hope you feel better soon! I know it’s a different situation, but my mom has ulcerative colitis and was on Prednisone forever but nothing helped until she got a new doctor. I hope you find one that suits you.

I hope this flare-up passes quickly… Brian obviously loves you an awful lot, and I can’t imagine he would hold your illness against you. Also, I’ve discovered that Sweat shirts are great for post-run lounging – they’re super soft (I apparently sweat so much that no amount of Glide protects me from my sports bra) and, obviously, super awesome.

Yes. Yes. Oh, the honesty here is making my day happy, Ali.

You are awesome.

Jocelyn H says: May 23, 2012 at 12:31 pm

Ali, I can’t thank you enough for your blog. My boyfriend introduced me to it a few weeks ago and it couldn’t have come at a better time. My Crohn’s is mirroring yours right now and it has been such a relief to have someone to relate to – now if only I could start running again! It will come in time :) Your comment about worrying that Brian will break up with you is a constant fear of mine too (well, my boyfriend, not Brian haha). I realize I’m being irrational but I worry so much about how my Crohn’s affects others. Thank you for being so honest and for helping me see I’m not alone. I hope the rest of your Remicade infusion goes quickly – I used to love mine, time to just relax (I had 60, bit of a guinea pig for the hospital!). Thank you again!

Jocelyn H says: May 23, 2012 at 12:41 pm

And I hope you feel better soon!

Siobhan says: May 23, 2012 at 12:46 pm

Love your writing Ali! You really are an inspiration. Keep on sweating and doing whatever makes you feel good :) I hope you feel better soon!

Hi Ali–
I too suffer from an autoimmune disease and have found juicing to be a great coping mechanism. A key to management is reducing inflammation in your body—please consider adding fresh ginger and/or turmeric to your juices. These are fantastic all-natural anti-inflammatories. :)

Melissa says: May 23, 2012 at 1:09 pm

I think you are a complete inspiration. About 8 years ago when I started going to the doctor, they were convinced I had Crohn’s Disease, even after the colonoscopy I had enough damage to convince the doctor. However, my blood test was negative so they decided I didn’t have it. I do have a fructose malabsorption and some other unknown IBS like thing. It flares up sometimes and I go back to the doctor and they can never figure out what to do. Usually, though since it isn’t Crohn’s or UC they treat me as if I’m crazy despite not being able to run a simple errand without finding a bathroom.
It can be very bad for me sometimes, so I can only imagine what it is like for you. I am amazed at what you continue to do.

Hang in there Ali! I understand your frustration with the flare-up right now and also dealing with ignorant questions from people re: how much exercise you should be doing! Both of them shall pass. People often mistake motivation for exercising as overdoing it when it’s anything but … it’s just a sad state of the times. I second the reader who mentioned adding ginger and tumeric to juices; it’s definitely worth a try; you could also look at monitoring the fiber content of what ingredients you choose to juice and mix up the routine every few days … kudos to you for being so honest here. We’ve been conditioned to always think we have to put a happy face on things and as positive and energetic as I think you are, your willingness to discuss such a painful, frustrating part of your life is so refreshing to read.

I think you are incredibly inspirational, dealing with a chronic illness is a challenge, and you manage to maintain a cheerful, positive outlook more often than not. That, to me is incredibly impressive. You also remind me a bit of my mom (in the best way possible) who has Rheumatoid Arthritis and has had it since she was about 13 – so we’re talking 50 years. She has also been on Methotrexate and Predinsone off and on throughout the years and seeing how both of you continue to push through and do everything you can on a regular basis, instead of allowing the illness to be an excuse is amazingly awesome to see. *hugs* I know I don’t know you in real life, but please know you are awesome and totally motivational and inspirational to people :)

I hope that when this is over, we get to see Parkour Ali. (Ali on the Wall Doing Backflips?) Because I bet that would be awesome.

I love this post. I know I am guilty of thinking my life is over because I can’t digest raw veggies, but that is nothing compared to what you deal with.
I can tell that Brain loves you, I mean the man makes you juice. Juice=love.
Just take the time to get better and I know you will figure something out :)

Lauren told me this morning that if I did nothing else today, to please read this blog entry. So, I did. And then I promptly posted it on the Great Bowel Movement FB page because, darnit, others should read it, too. Your blogs are always a pleasure to read, but the CD ones hit closest to home. Thank you for being real, Ali.

I really just want to hug you right now. The things you’ve said are many of the things that I want people to know. This craptastic disease is livable but it sucks and anyone who has self-diagnosed themselves as having this (or another GI disease) is crazy. IF you think you have the same symptoms then go get checked. It’s totally sexy, especially when you have to have your brand new husband (of about a month and a half) give you an enema. Yes, it’s fabulous.

Also – that’s as close as my husband has come to really knowing (unless he and Brian are surfing the web together to find out more about Crohn’s) what’s happening with me. It’s just not comfortable to talk about and I’ve been with Dan for 10+ years and now we’ve been married 5 years. We still don’t talk about it because it still makes me uncomfortable.

Bravo to you for telling people it’s not about the exercise. My GI has specifically told me that the activity is good – not only for weight loss (which I need) but also to keep my body healthy. There are lots of other benefits to exercise that help out too – when you’re outside think about the vitamins D (I think) that you get from the sun. The other thing to keep in mind is that if that’s what you love to do then that’s what you should do or you’ll be spending all your time in the bathroom and you’ll be depressed.

Anyway… I figured you were still feeling kinda not so good today and so I went and ran. And while I didn’t really know what would happen on my run “you” were there pushing me along. I thought if Ali can’t run today then I’m going to run (albeit slowly) for her. And I sweat it out and I wanted to quit but I didn’t. So thanks for encouraging me, even if you didn’t know you were. :)

Thanks so much for sharing your experiences living with Crohn’s — I think most of us really have no idea what it must be like, but reading your blog helps me understand better than I did before. I also think it’s great that you continue to do the activities you love and don’t let it get you down. You’re awesome!

Ali, you are such a strong person and such an inspiration! One of my friends from college has Crohn’s & she was always in and out of the hospital throughout school. She is a huge runner now & says it has helped control her symptoms! So you keep sweating girl bc you’d be miserable without it:) You’re awesome & I love your blog! Your positive attitude through all of this is incredible & I bet Brian sees that and loves you for it!

A effing MEN to all this. Seriously. On behalf of all digestive-disease enduring people, thank you for writing all this—I couldn’t agree more with all of it. Except I’m slightly less ladylike when giving my boyfriend details :) I am also glad you addressed the whole exercising while flaring issue…because I’ve wanted to hit people for you when they’ve been commenting on it. I think a lot of people don’t understand that there is still a lot of ambiguity and mystery to digestive diseases—part of the reason research and remedies are just now beginning to surface—and almost every doctor I’ve seen believes a lot of it has to do with our current mental state and stress levels. AND they’ve all said that frequent exercise and movement is encouraged for general digestive health. Run on lady…once the mood strikes :)

Also, you look beautiful in the picture of you and Brian—handsome couple right there!

gina wyatt says: May 23, 2012 at 5:34 pm

Hi, my name is Gina, im 39yrs old and have had Crohns since I was 17, was wondering how quickly you flared after giving birth to your beautiful baby? I have 2 children, being pregnant and giving birth with both kids has caused me to flare beyond control beginning in the 3 trimester and destroying me for two years after, leading to a bowel resection one after my son and two the same year after my daughter, child birth has been very caustic to my body, i would do it over and over for my kids, but im also curious as to how child birth affected a fellow crohnie.

Anna-Marie says: July 23, 2012 at 3:36 am

Hi Gina

I was diagnosed with Crohns since I was 17 also (am 33 now). My experience with childbirth sounds similar to you – I was on high doses of prednisone from the 2nd trimester onwards and after the birth of my son and subsequent flare up I didn’t have a ‘normal’ bowel motion for three whole months. I was like the walking dead!
How are you doing now?

Wow, respect, girl. I have no idea how you maintain such a positive attitude but it’s really inspiring! I’m sorry people are hating on you for working out, NOT COOL.

You’re a freaking rock star. That is all.

You are very inspiring. I have sent a friend to your blog who was recently diagnosed. Thanks for your honesty.

Barbara says: May 23, 2012 at 8:33 pm

Thanks for the smile… have shared my life with Crohns’ disease for almost 38 years. Would love to tell you it gets better, but I cannot lie. Keep the sence of humour it eases out the bumps in the road. Thanks again.

A longtime friend of mine was diagnosed with Crohn’s several years ago and she’s had it rough. I feel so helpless on her bad days/weeks. I think you are amazing for all that you accomplish. I love your positive attitude and honesty. It’s not easy. Thanks for inspiring all of us.

Rebekah says: May 23, 2012 at 9:03 pm

Awesome post, Ali! I could’ve written it myself hecause Ive pretty much had all those same thoughts. Its very frustrating when people with sromachaches try yo compare to crohns but I really just think they are totally uneducated about it. I was getting my remicade today too and am hoping to be feeling lots better soon…and I totally agree about exercise being good for the crohns. Thanks for being so real ….love this blog because it is something I can so relate to…a runner with crohns just trying to do what you love! Great post!

I think Brian is around for keeps. Otherwise he wouldn’t have moved in with you. And I would think that exercise would help lower your stress.

Ali, I’m truly impressed with your candor in writing about living with Crohn’s. I love that you’re educating so many people on what the disease is and is not. I was diagnosed with it almost 3 years ago, so I’m still learning how to manage my flare-ups in a way that work for my annoying guts. Totally agreed that juicing helps get nutrients in when you just don’t want to deal with the pain of digesting food. Thank you for writing about your experiences (and frustrations)- just reading through these comments it’s obvious that you have an army of supporters (in addition to your awesome BF, of course). Count me in. :)

That was a great summary, Ali. I think it is great that you work out. There have been times (I have UC and am just getting out of a flare that started in early December) that I wanted to sit around and do nothing then thought “Ali would be running” and ended up at the gym! So thank you. People don’t get it. It is a disease people think you can control, and they are wrong. You’ve had your body for quite a while so I think that you of all people know how to work it best..

Woops, wasnt finished! I hope you feel better soon and I know that you know that these horrible days will make you appreciate the good ones so much more. Oh, and your infusion room looks much nicer than mine!

As a fellow runner with a chronic GI illness, I completely get where you’re coming from. While my symptoms don’t sound as bad as yours on a day-to-day basis, I find that running does help me feel better, and that the unsolicited advice is just as frustrating. I finally snapped one day and told a friend that she wasn’t allowed to complain about how her “stomach hurt” until she’d been given her doctor’s cell phone number and told to call whenever she needed. (That was the point when I realized I’d hit an all-time health low.) It’s a long, challenging road, and I think it’s great that you’re doing what feels best for you, because only you know what’s going to make you feel better on any given day.

Sorry to hear you are having such a bad time:( Sending you happy thoughts and I hope you feel better soon!
Something I learned during the time I had a bad case of the runs: plug your earphones in and crank your music right up. It seemed to help with the embarrassment and took my mind off it.
I’m sure you’ve heard a million and one different suggestions before though!
All the best!

I was dx with crohn’s at 26 and I hate to say this but it sucks to get it later on because you want that normal back it will never happen and dealing with that is hard at times. I am the 3rd in my family to have this fun disease. My 1st doc thought it would be fun to keep me on pred for 9 months I gained 80 pds and since my body’s evil I finally got dx with fibro last yr so getting back to the gym has been slow going and so I’m now over weight but feeling good working out again. I get the wait you have crohn’s but your not skinny, well some drugs will do that to you. I’ve also had people tell me you should just get surgery they seem to think its a cure. The thing people don’t know is with crohn’s no 2 people are alike that’s why it’s so hard to treat. I’ve been on pretty much all the meds even tysabri which is a last resort drug since its side effect is a brain infection with no cure. I got drug induced lupus from both Remi and humira but thats rare. My doc says he just can’t figure out why my crohn’s is so drug resistant, so since my dx 5 yrs ago I’ve been in remission 8 months and flaring the rest of the time. You inspire me to want to keep up with the workouts as I do believe being in shape and eating healthy is a good thing. More people will be aware of what we go through everyday. By the way my BFF of 24 yrs is getting married in sept and my biggest fever is having to run to the bathroom as I stand by her side during the ceremony. Sorry for the long post:) ps this disease makes us stronger!

Danielle says: May 24, 2012 at 2:10 am

This is a great post! Echoing so many others, your positivity through trying times is evident and inspiring. Your candor clearly resonates with so many others. Brian’s gift makes so much sense now! He really was thinking of you and your health and happiness. I love beets–I bet beet juice is delicious. Hope you feel better soon!

Oh, the 5am wake-up calls to have ample ‘bathroom time…’ I know them all too well. This was a really stoical post in my opinion – you don’t seem like you’re ever moaning about your illness to me, and I completely get the desire to work through things no matter what.

I’ve always been told by docs that I have IBS but the symptoms I get are so similar to yours (right down to the same temperature of fever) and some of the other symptoms relating to…blood, really worry me (sorry, I am so embarrassed and not able to be as candid as you are) But I can’t even get tested for Crohn’s on the NHS (I live in the UK) because I’m not losing weight, which my GP says would be happening (I actually have a problem with gaining it despite monitoring calories). But things are getting worse and I too get really annoyed with the whole ‘I have a sore stomach so I must have Crohn’s!’ brigade. Is weight loss always present with Crohn’s?

Anyhow, I really hope there are no words spelled incorrectly in this comment…

xxx

This is the first time I’m commenting.

I received your “I Love Sweat” t-shirt!!! I wanted one when they first came out but they sold out so quickly. I have ulcerative colitis and I’m proud to wear the t-shirt and happy to support the Crohn’s and Colitis foundation whenever I can. Thank Brian for staying up until 2:30 am to make sure all the t-shirts went out. He is definitely a keeper!

I want you to know that you are such an inspiration!!! I love how open you are about your illness and that you are spreading awareness.

i always find juicing helps me when I’m having a flare- juicing removes the fiber from the fruit or veggie and definitely helps relax the intestines. I hope you feel better and go into remission quickly. !

Awe girl, I feel for you and you have put everything into words what so many of us with UC,etc are unable to express. Please continue to take care of yourself, as you know better than anyone what you need.

Take care.

tn

CapeTownian says: May 24, 2012 at 1:55 pm

Hi Ali,

Another admirer who usually stalks, and is finally commenting! A lot of the people who have commented on this post suffer themselves from digestive issues (Crohns, UC or IBS).

I feel really grateful that I don’t suffer from any digestive conditions, however I wanted to address another of the concerns you raised about feeling guilty, or embarrassed about your “burden” on Brian.

I am head-over-heels in love with someone who also has a chronic illness. It is not always a problem, but when it is it has sometimes required surgery, and then quite intensive care. I have lost sleep, cancelled holidays, missed Christmas with my family in order to stay in town when he was in hospital and done all manner of undignified care-taking afterwards. And there is no place I would rather have been, because there is NO ONE I would rather be with.

He is ONE HUNDRED percent my hero and the absolute love of my life. He is fun, loving and positive. He is also admirable and dignified. And he is human and vulnerable sometimes.

You have to believe that people who love you will NEVER see your suffering as a burden to themselves. I have worried about him worrying about me! So do your loved ones a favour, and stop worrying about them!

Take care of YOU! :D

Also- you don;t know this, but your build up and then success at the Hamptons Marathon is the reason I clicked “enter” on my own marathon. I became a marathoner on the 19th Feb this year. You made it look like so much fun I had to know what it was like myself.

So thank you. :)

Krsitin says: May 24, 2012 at 2:54 pm

I’m so glad that you discuss these things on your blog. Right now I’ve been diagnosed with IBS but my gi doctor is an ass and in less than 15 minutes said I had it and prescribed a pill. He also said it was bad and because I was fat and ate fatty foods. Nope, I still have massive problems when I eat healthy and I’ve had this for 18 years and wasn’t fat back then. Once I get my health insurance back I’m getting a second opinion.
It is so hard for people to understand that this is a daily thing to deal with. I don’t eat out as being more than a 30 second run from the bathroom after eating is terrifying. I also don’t go anywhere for about 2 hours after eating. If I’m going on a car ride I fast and don’t eat. I had a boss that was not understanding and would ask if I could wait until it slowed down at work to use the bathroom. Um NO.
I hate that you have to deal with this but reading your blog entries is helpful to me. I hope that this flare goes away fast and you are able to resume your running/life without Crohns being a bitch.

You are so positive and upbeat.
I want to throat punch Crohn’s for you.

This post is so honest and refreshing. I have a rare, serious form of anemia, and I have felt/heard a lot of similar comments/questions from people about my own situation. Thank you for writing this, truly.

This was really fascinating – thank you so much for sharing. I can just imagine how frustrated you must be when people complain about stomachache!!! How did you get diagnosed?

Really great post. I am sorry you are having a flare right now. I know it’s not easy and you have probably are sick of the suggestion, but have you thought of going gluten free? My co-worker has Crohn’s and she has felt so much better since making the switch.

Also, don’t forget about the Family Medical Leave Act. If you run out of sick time your unpaid time or vacation time won’t be used against you.

Good luck with everything. Thanks for the running inspiration.

Jennifer says: May 25, 2012 at 3:44 pm

Maybe this is just me but…my body cannot handle beets AT all WHATSOEVER! After I figured this out, I googled, and apparently it’s really common. Something like 85% of people cannot properly digest beets. Be careful!

Great post! I’ve had UC for 20+ years and am going through a flare right now. It sucks, no two ways about it. And like you, I’m still trying to figure it out, even after all this time.

I really appreciate your willingness to talk about Crohn’s- it really helps to educate all your readers. It’s TOUGH having a chronic illness you have to deal with on a constant basis. Thanks for continuing to share your story!

I just wanted to leave a quick comment (quick is unlikely, but I’ll try). My cousin sent me a text today. After seeing your blog info in a magazine. I was diagnosed with UC 4 years ago and after having my large intestine removed and over 10 surgeries in the last 3 years, I’m still having issues with my gut. The doctors are unsure if I was misdiagnosed and actually have Crohn’s (all tests have been inconclusive) or if the problems I’m having are due to post-operative complications and diet. I’m currently in some kind of flare-up and was just released from a 2 week stay at the hospital yesterday. I’m so glad to be home, but I have the same guilty feelings you have about being sick ad being a constant burden on the people I love. Reading your blog posts today have really put a smile on my face and helped me with this prednisone psychotic episode I’m having. HAHA! I too have tried all of the same drugs you’ve mentioned, including Remicade, Humira, Methotraxate, and soon to start Cimzia. I never thought I’d be back on steroids after being on them for over a year and having TERRIBLE side effects. But alas… here I am. I just wanted to say thank you, for being so candid and honest about your struggles and accomplishments. And whether you believe it or not, you really are inspiring. Good luck in all you do! :)

Lindsey says: July 2, 2012 at 3:33 pm

Fantastic, candid blog. EVERYTHING you said is so true! I feel guilty about being sick too and have told my husband more than once that maybe he should ditch me for a healthy, joyful individual. We just have to take the good with the bad ( hey maybe bring an extra pair of shoes to work to secretly change into so know one “know”! Lol- funny how I think only girls with crohns have the “they an see my shoes-” thought ! I can relate).

In 2002, blood was found in my stool from a routine physical. The gastro doc did a colonoscopy and found thousands of small ulcers on my colon; the diagnosis was crohn’s. No active symptoms until 2007, when out of the blue, I started having lower right quardrant pain that continued to get worse. The doc said it was a symptom of crohn’s and wanted to put me on prednisone. After reading about the side effects, I decided to research alternatives to meds. I ran across this article written by a Mayo Clinic gastro MD who was also an acupuncturist. He said some of his patients had benefitted from acupuncture to control crohn’s. A friend new of a Chinese trained acupuncturist in another city that he used before. So I called that doc and asked if he could help me by treating the Crohn’s; he said yes. So in 2007 I went for the 1st treatment and it helped immediately. The right quadrant pain went away. In the beginning, it was difficult to determine how often I need the treatment, but after trial and error… 3 weeks works for me most of the time. Any longer and the pain returns and start getting mouth sores. And to this day, I have never had a major flare per say…knock on wood. I my doctor(MD) says sort of makes sense to him…says acupuncture treats imflammation and crohs’s certainly is that. I don’t know how it works, but for me it’s been a life saver…no harsh meds so far. Your right about the drugs causing horrible drug side effects, many of which have not been tested long term. My mother had rheumatoid arthritis and was treated with low dose methatrexate because her doctor said it had been around long enough to know the long term effects. She told my mother one side effect of that drug was fibrosis of the lung but, she thought developing it was slim because she was prescribing a low dosage of MTX. Well, even on low dosage, 11 years later she died of complications of lung fibrosis. So I was really determined to find any way to stay off the drugs. I am writing because I have been lucky and acupuncture has been helpful in controlling my symptoms and so far 5 years later not needing to start harsh meds to control my crohn’s. Not sure why, but I haven’t read much about using acupuncture, but if this could help 1 person, I thought it was worth shaing my story.

I love your blog! I think you’re my long lost twin! Giraffes, marathons, Crohns and all!

I have crohn’s also but have not done any of the drug treatment. I have a Dr that uses all natural supplements. I recently used a product called ClearVite. The website is clearvite.info. It has a diet with it and is a 14 or 21 day plan. I felt great during and after. Will use the meal plan in my daily life. Take care

Crystal! I’ll look into that and ask my Naturopathic Doctor. I’ve been taking these enzymes which have helped a lot with my bowel issues. They’re called, Intenzyme forte, IPS and gastrazyme. plus probiotics… Hope you’re doing ok with dealing with this terrible disease. Im also doing a whole food plant based diet soon. :-)

Thank you. Just… thank you! People give me weird looks when I make jokes about having Crohn’s. I’ve always looked at it as a laugh or cry situation, and I’m tired of crying! Laugh it is!!

Have you figured out why people think they can talk to you about their undiagnosed gastrointestinal issues? I have no problem talking about things like that, but I don’t understand why people think we can diagnose them…

Any-who – Love the blog. Thanks for the laughs! Keep at it!

Ali,
This post was so refreshing to read and I’m thankful that your blog exists. I can relate to pretty much every point you made!! Hope you are doing well. I’m recovering from surgery and working my way back to running – I’m in week 1 of Cto5K and going from there. Thanks for the inspiration. – M

My husband has crohns. He was on Remicade for 5 yrs and around November 2010 till December of 2011 he started having random swelling. It turned up on different parts of his body and as time went on more and more frequent. Since January of 2012 till now in December of 2012 he has been off of Remicade. It worked no swelling since. It got really scary because it would swell his throat or young some times and he couldn’t breath very well. Just wanted to share with you this info because its not very common but due watch for this as is is dangerous.

I’ve had crohn’s disease since I was 12 I’m 24 now well before 12 I was diagnosed at 12 it took them years to find it. And to this day I can’t seem to find a good Dr that knows what their doing. I’ve never heard someone talk about it the way you do. You say most of the things I think to myself I’ve been married for almost 2 years I don’t tell my husband much I don’t want him to get overwhelmed and I really don’t know if he could take it. Sometimes I think he thinks I’m pushing him away especially like personal time but I’m so worried I’ll have to go to the bathroom nd maybe not make it that I just avoid it. Anyways I just want to say thanks you for sharing I don’t feel so alone!

Marisa Cockrell says: December 26, 2012 at 4:13 pm

I am so grateful to you for this blog. I am still recovering from my Iliostomy reversal. I am too sick with a flare up right now, however; I am sending you big kudos for doing this blog. I so needed to know I am not alone with my feelings. I cannot stop crying lately. Bless you, Brian and your beautiful little man. I will continue with these blogs knowing someone gets “it”. Not Crohn’s but the feelings which comes with Crohn’s.

Thanks for your honesty in posting this, I have had Chrons since I was 14 (now 23) I find my self in a lot of the same situations as you, wanting to work out but can’t, long bathroom visits, tiredness all the time. I am good to know that someone is going through what i am and can understand, currently all my friends and family think I am lazy and facking. The just don’t seem to understand. Sooo thnx.

I just recently got diagnosed with Crohns… I haven’t had the fevers that you are talking about but definitely the bowel issues and the abdominal/stomach pain!!!! I just had my first IV today to get some nutrients into my body and starting a whole food plant based diet this weekend!!! I’ll keep your blog in mind… Its nice to see and be able to interact with other people who are dealing with this. It makes me feel a little bit at ease… :-)

Great post. You have a great spirit in spite of all the trouble Crohn’s gives you. I just got diagnosed with UC shortly ago. Luckily prednisone seems to have kicked the symptoms *crosses fingers*. I’ve also gone onto SCD *crosses fingers some more*. Anyways, thanks for the post, reading blogs and whatnot was definitely helping me cope while I was flaring for the first time.

Finally a funny side to this disease. Its though and annoying but why not smile?. Like you iv been told stop trying to keep fit? why do i need to give up on something i enjoy so much? All my friends and family give me a lecture every time i go for a light run even! great post thank you for sharing it with us.

I was diagnosed with Crohn’s in 9th grade. Throughout high school, I was a competitive distance track and cross country runner. By 11th grade, I was the fastest on my small town high school’s team. I was also dealing with intermittent flares, playing the same Russian Roulette game with a whole host of anti-inflammatory drugs and knew the location of every public bathroom (or well-shaded wood- wear two pairs of underwear in case one needs to double as TP) on my runs (no pun intended). I just want to thank you for your honesty and candor and let you know I appreciate that I’m not alone in my sometimes wackadoo froyo and running fixations. I run, not in spite of my Crohn’s, but because I am a much more complex and dimensional human than a IBD I’ve simply had to claim as a fact of life since 14 (I’m currently 21). I hope you’re able to at least stabilize on the Remicade (I took it throughout high school before having a reaction and was eventually placed on Humira) and wish you luck with finding a diet that is helpful! I’m currently pursuing the Specific Carbohydrate Diet made popular by biochemist Elaine Gottschall, so I too am hoping to find a diet that will liberate me from scary meds with scary side effects!

I am in love with you. I want to print this post to carry around with me and throw at people when they start in on me about my sick time, sleeping habits, eating habits, bathroom habits and all other general living habits.

I hope you are getting better. Ive had Chrones since I was 10 I am now 53. It hasnt been a happy life.
I wish I could give you some good advice but I cant, only to say keep the stress down, try not to live up to others expectations and do what makes you happy, as crazy as it may be. Just live for yourself and dont look back, ever and never ever feel embaressed (yeh its hard)

Name ...Norhan says: February 13, 2013 at 12:58 am

i am 16 and i am having crohn’s and am trying to live normally but am feeling so tired like all the time specially my joints and i cant even study, i have since a year but i just know since few months thnx alii for sharing this its i really wanted to know people who had the same pains so that we can make each other feel betterr somehow

Hi! I read your blog for the first time and wanted to tell you I completely understand you. It is the first time I’ve read someone with the same disease as me feel exactly the same way I do!!!!
I have been diagnosed when I was 12 (now I’m 27) and don’t really remeber how it was to live without crohn, also feel the same way about goint to the bathroom at work (exactly the same happens to me, bathrooms are public and everybody knows how my shoes look like, or that I get up a lot to go to the batrhoom) and at home I have to rush to the bathroom and ask whoever is there to leave, but they always want to finish what they are doing and never understand my hurry.
Also I don’t understand everything yet and feel backaches and all.
I prefer not to talk about my disease at work beacause I had problems before with it (Everybody looked at me like I was going to die of something), so now I’m the guy who eats different and goes to the bathroom a lot… Also i get high fevers every now and then and many of my co-workers may thing I make them up, but I think that is better than the pity faces and the conversations I overheard on my previous job about how I was so ill, etc…
Anyway, thank you for making me feel I’m not alone, and wish you the best!

hi everybody,i have been dealing with Crohns Disease for over 5years. The
pain and discomfort caused by this hideous disease destroyed my life. I have
gone through two bowel resections and numerous emergency room and hospital
visits over the years. During the first twenty years of this disease,
Prednisone and Sulfasalazine were the main treatment. Later Antibiotics
(Ciprofloxacin or Metronidazole), Corticosteroids, 6-Mercaptopurine (6-MP),
Methotrexate, and Cyclosporine when I ended up in emergency rooms. Which
happened more than I can remember. None of these worked as the Prednisone
did. I eventually started receiving Remicade treatments that helped with the
fistulas for a while. This was temporary and I had to go back every 6 weeks.
In 2007, the disease flared-up and consumed me. I was found in bed
un-responsive and rush to the hospital in an ambulance. I spent three days
on life support and stayed in the hospital for approximately 35 days. During
this time, they were not able to get control of the disease and I
experienced my second bowel resection. I never recovered. After the surgery,
I got worse. The pain returned and got worse, and I developed a new symptom
of rashes all over my skin. The pain stayed at a level 10 and was now 24
hours. I slept in 30 minute increments because my bowel frequency was
unparalleled to anything I had experience in all the years of harboring this
disease. I literally was preparing for my death. I sent all my possessions
to my children and arranged for my body to be taken care of. I at this time
lost all hope and wanted nothing more than to die. In September of 2010, my
roommate approached me and told me she met someone whose grandchild had
Crohns disease. He had come across a spell-caster that he felt could help
me. I responded that I did not want help and really, as if I need another
miracle in my life as I rolled my proverbial eyes. Through the years, I had
tried everything. I made my own food. I ate different diets. I tried
everything from Probiotic products to vitamins to miracle cures. At every
corner through the years was the ultimate miracle that resulted in yet
another disappointment. With her insistence, I contacted this individual and
when we talked I felt there was no way I wanted anything to do with this. To
my disappointment, there was a voice deep down pushing me forward. I
accepted everything he said i should do and everything he told me. My
attitude was that I had nothing to lose. Therefore,I followed his
instructions,he sent me some materials and information on how to
prepare and use them which i did. Two weeks after, the pain
disappeared and I was able to sleep
through most of the night. The frequency went down and I was able to sleep
through the night within a week of starting the formula of what he gave me.
Today I am not totally symptom free and there are some resemblances of the
disease present at times. However, I lost my ileum in the first bowel
resection and bile can be an issue if I do not watch my diet. For the most
part, I live a productive, happy symptom free life. In my heart, I know the
disease is gone. I feel that after 6 years of pain and everything else that
comes with Crohns disease there is a body and cellular memory.this is
his contact details;ishvaratemple@yahoo.com. As each day
goes by, I laugh more than the day before. There is hope for people out
there.I guess he saved me and magic does still exist with right people…

Dave Scott says: February 25, 2013 at 4:14 pm

Hi Ali, I have crohn’s …I’ve had it for over 25 yrs. Your on the right track, keep jucing !!! you body need the nutirents your not absorbing. Try and stay stress free, easier said then done . But getting stressed or worrying about things you can’t control can fire things up . i’m sure i’m not telling you anything you don’t already know. Point being , you a brave lady to voice your ups and downs with this disease . I work out 3 times a week and it really helps the mental side…Don’t stop !! I wish you all the best in life ..Stay strong .
Your crohn’s bud.
Dave.

My son is 11, diagnosed a year ago. We’ve had him on the SCD diet (breakingtheviciouscycle.com) for about 9 months (inflammatory markers in normal limits now) and started on LDN (lowdosenaltrexone.org) about 6 weeks ago, rather than subject him to methotrexate and remicade. LDN attempts to boost the immune system rather than deplete it. Not a cure, but neither is Remicade. Just a couple alternatives for you to check out. Good luck.

Tracy Horton says: March 6, 2013 at 10:25 am

My 11 year old son may have this, gonna see a GI doc tomorrow and go from there. He has some of the symptoms, but not the typical ones. He was hospitalized last week for 3 days, I’ve never seen him in so much pain. I hope its not, but if it is we’ll deal with it, maybe he can go for long periods without a flare up. We’ll know soon. I enjoyed your story and I know that sounds crazy, I’ll stay tuned.

Peggy Pearl-Kirkby says: March 10, 2013 at 12:46 am

Ali…What a wonderful outlook you have! I love your blog (tho’ I’ve only read this one page!).

I came upon your blog because I write health and medical-for-dummies type of articles for the company where I work. My usual articles deal with illnesses and conditions which tend to be slightly embarassing for the sufferers or which may often be mis-diagnosed due to common symptoms (which covers just about every serious condition known to man!). This 2nd in a series of articles dealing with the “Invisible Illnesses” (a series suggested by one of my cousins) obviously, is about Crohn’s disease.

The reason I’m commenting here is that I would like to ask you a couple of questions to help with my ‘research on the subject of Crohn’s…nothing technical (my medical facts/theories come from various research hospital and schools, both Eastern and Western). But I always like to include 3rd person, personal insights, experiences, etc. with my articles to make them more relatable to the people who read them and, where appropriate, include links to the sources of research, which in this case would be your blog.

It’s always your choice to either laugh or cry when life throws you a curve; how does that go? “When life hands you lemons, learn to make lemonade!”, right? I have enjoyed your lemonade. I will be back for a refill!

I wish you all the happiness in the world!
Peggy

My cousin has Crohn’s disease, and he’s had it for a while but they caught it when he was 11, he’s now 15 and is always constantly sick. He has to go for remicade a couple times a month, because he didn’t want to get the colostomy bag, as he is only 15, I don’t see him being a normal teenager and it breaks my heart. I love my cousin with all my heart and I wish so badly that he could live a normal life everyday, but his Crohn’s is very severe. I remember just a couple years ago he was in and out of the hospital for months, he’d stay in there for months at a time. The Crohn’s has effected him all the way from his esophagus to the end of his intestines. I hope and pray one day he can learn to live with it because as of now he doesn’t go to school when he has a flare up and he misses a lot of school. I’m deeply sorry for your troubles as I don’t know what it’s like to have Crohn’s but I do know what it’s like to see someone go through all of it.

Hi I have had a daughter who has crons thing. They were treating bowel thing can’t spell. I did spend a lot of tym wiv her she went into a coma they took half hider bowel away a lot of going to roal London she had quite a tym wiv it now she has two kids I no it can cause a. Problem if u r working. Some people no about but believe there r a lot of people don’t u should find out soon as luv sue Atkinson 1

this has helped me a lot.. thank you for putting this out there. my BF has chrons & is not working due to this. it has been a struggle & i feel like giving up on it all. at times i feel like the chrons was just an “excuse”/laziness but reading ur story has opened my eyes a bit. i didnt realize all of this

Harriett says: March 23, 2013 at 7:09 pm

Hello!
Just wanted to leave a comment after stumbling on your blog.
I have Crohns disease too. Nasty little bugger of a disease, I’m completely there with you on this one. Was diagnosed at 11. Managed to keep myself in remission for 10 years (hooray)- now sadly appear to me coming out of remission and entering a flare. Balls.

Anyway, I just wanted to respond to your post about juicing, diet and alternative therapies to ease your Crohns symptoms, as my doctor actually recommended that I always take the holistic approach to treatment where it is possible for me to do so in view of how harsh medicine for crohns can be on the body. I and many others would agree that yes, prednisone and steroid treatment/ immuno-suppressive treatment in general can cause adverse psychological side effects, the experience of which can be just as nasty as the disease itself. So I’m all for your decision to seek alternative treatment options, good for you!
I wanted to share my experiences with such therapies with you in case they might prove useful to you in some way…

So far I have had the following:

-Reflexology… in my opinion this equated simply to a nice foot massage, but I don’t rate the medical benefits the treatment is purported to have- it just never seemed to work like that for me. I would rate it ** simply because it was a nice de-stressor.

– Chinese herbal medicine (from a top notch therapist who really knows his stuff)…it was really good at clearing up my stomach pains and fuzzy white tongue/ mouth ulcers. Sadly the therapy was really really expensive. But all I had to do was drink a specially prepared herbal tea and stay away from wheat for a while and I was on my way to a less Crohns-plagued me. I rate this *** for effectiveness (would rate higher but the teas tasted pretty rough).

– Naturopathy/ Pelolithic diet…this is amazing and 10 times better than any medicine (combines paleolithic eating and periodic fasting with hypnosis/ stress reducing techniques and natural vitamin supplementation) provided you get advice from the right people and do good research. I would recommend that anyone read a book by Dr. Andrew Strigner on food and diet or better still go and see him in Harley Street. He is himself a monument to the effects good diet can have on longevity and quality of life, as he is still a practicing doctor yet well into his 90s now, and in top notch physical condition. *****

– Aloe Vera drinks/ Electrolite/ mineral supplementation and replacements…quite simply didn’t notice any benefits from this approach to treatment. *

– Psychological treatment (counselling and hypnotherapy)…hypnotherapy for reducing stress is great for preventing stress-induced flares if you are prone to them (I know I am). Logically I didn’t experience any other benefit to my Crohns from these treatments bar those experienced as a result of stress reduction. ***

– Reiki- see the above **

– Frequent light excercise/ yoga, walking etc…in the same league as naturopathy, absolutely excellent. Walking for 1 hour twice per day didn’t bombard my system with strain so managed to reduce my stress and fatigue, regulate bowel movements, and make my body more able to deal with the daily traumas crohns inflicted on it. Gentle yoga 3 x per week bolstered these effects. ****
hope these insights prove useful to you in some way and take care,
H

I have the same Giraffe necklace, I named mine Geronimo. Well, really my friend Sarah named him Geronimo. He’s been with me on long runs in this snowy boston winter (the first time because in my brain fog I forgot to take him off, I have no excuse for the rest-I don’t normally run in jewelry :/) and for long hospital stays for my crappy crohn’s belly. Love your blog!

Hey.you are doing what’s right. I have had chrones since I was 6 and am 35 in may. I did the remicade for 8 yrs, I’d love to be normal as well. And I felt guilty.about my love for yrs because of being so sick all.the time. Don’t waste your time feeling bad because if they really love you they won’t mind. If not you will do better. I hope your bowel part gets better with age. Beware of how many children you carry, 1 too many was number 2 for me. He is alive but my scar tissue tipped apart and finally after 20 yrs. I am almost back.to me. , especially after 16 surgeries. But recently I have found some wonderful natural things for chrones. I know different things for different people but email. Meif you want to talk. Tanya, p.s I have a 5 and 6 it old boys.

Just stumbled upon your blog. Enjoyable reading about a not-so-enjoyable condtion. My 7 yr. old son has crohn’s, so I know a little about it. He did the steriods, now he’s on the 6-MP and Flagy. One thing I do know is that it is tough to live with – I hope something is found in the very near future that doesn’t involve so many dangerous drugs. BTW – your little man is absolutely adorable!
Ellen

Jason Ward says: April 13, 2013 at 12:22 pm

My Wife has Crohn’s. She was diagnosed in 2000. After many surgeries, most of which went wrong, including a lapse into coma after a re-sectioning that resulted in septicemia. We are beginning to wonder if there is an end is site. She has had several bags and now they are talking about removing her anus all together. We have resigned ourselves (although not discussed it with our Son) to the fact that we will no grow old together and in fact my Wife will be lucky to see 50 to way we are going. Currently she is 42 and about to face yet another surgery to close an open stomach wound and change her bag back to a colonostamy from the current iliostamy.
Do we have any hope or should we just enjoy the time we have?

Erinmidwife says: April 28, 2013 at 10:13 pm

Thanks for sharing your story, and with such humor and confidence. I am curious if you have tried GAPS, or at least grain-free, LDN, or hut healing supplements? I have not read all the comments, please forgive me if this has been asked already.

Hey thanks for sharing such an open and honest account of suffering with Crohn’s. I also have Crohn’s and am in the midst of a flare up – I didn’t do any exercise (and have exercised loads during periods of remission which didn’t bring my Crohn’s on) so from admittedly anecdotal evidence, don’t think the two are intertwined at all. If anything exercising is even more important for people with Crohn’s disease to keep bone density up, as it’s likely to be less than in others due to both, taking anti inflammatory steroids and chronic diarrhea/ malabsorption of food.

Your ‘little man’ is incredibly cute! Wish you all the best Cx

I was just diagnosed with Crohns diease after going through a colonoscopy and endoscopy. To say the least im nervous and dont know how the diease will effect the rest of my life (im only 16). Your blog helped me see that I can do this. Thanks for your encouraging testomony.

Hi! I have a daughter with crohns, she was misdiagnosed for almost 5 years. The damage caused 2weeks in the hospital and resectioning taking out several inches of intestine. She is 17 and its been 2 years since her surgery. She has recently been experiencing symptoms again, she gets remix add every 8weeks. I have decided to start her juicing to see if it helps. Do you have any successful juice recipes to help her? Especially during a flair up?

I so relate to everything you just said…IAm so tired of being tired, I just want to curl up someome, near a.bathroom ….they quit making asacol, and the new drug makes me even sicker, I quit taking it. Hard not to get depressed some days, I also had cancer, but I beat that

sabrina says: May 24, 2013 at 10:07 pm

I have had crohn’s for about almost a year. At first i thought my man would leave me because of me having crohns and I just want to sleep alot. but luckly my man has stood buy me this fare and know we are planing our wedding. I still have alot of pain and the pain meds help some of the time. but i have notesed that I am starting to get weeker and little kids will come up to me and ask me you having a baby? and i try to tell them that i am not.

hi my names micah i just read your story. Im 15 and been struggling with crohns since i was 13. My disease has taken over my whole life. I don’t know how you do it. I got homeschooled because im nausea 24/7 , its not really my belly pain only when im doing something. Crohns has affected me so much that everything i do i either get tired , sick or my body gets sore. I would really like some feedback on how to accept it and being able to deal with it you can email me @micahmercuri35@aol.com …

Ali, I know exactly what you mean. I have had Crohn’s for 14 years, and I am lucky. I haven’t had surgery yet. My past is like yours, Asacal, 6mp, colozal, etc. and now I am basically just taking Remicade every 8 wks. with an anxiety and depression medicine. I have been active lately, trying to eat healthy and clean and exercise. I felt so good yesterday I gardened, day-tripped somewhere with a friend and felt fine. Today church was great, Sunday School kids were tolerable. Felt a little tummy ache – figured I am hungry… I have been to the bathroom 3 or 4 more times than usual and phantom bathroom visits too where I feel bad but nothing! I have been out of commission on the couch hurting bad with stomach cramps and nauseated beyond belief. I will have to eat later and when I feel this way I usually eat broth or mashed potatoes. and tomorrow I HAVE to go to work. People don’t understand. Sometimes they think I am faking it but believe me if I say I am hurting I AM HURTING. You think you are fine and then BOOM. The joint pain is killer too because I am an artist so sometimes I can hardly hold my pen, but I do, trooper on, Have to, It’s my life. At least this Friday is Remicade time and I need it bad. Well I would like to say I feel better getting this out in the open, but my pain is still there. But I know I am not the only one! Thanks for sharing and sorry for my long description. And, oh, I am tryingcurrently to find my significant other and when I start dating I don’t know how to approach the subject….I almost feel as though I am damaged so it is not really fair to spring this on anyone. And then I think I deserve to be happy and I deal with it best I can and everyone has something wrong with them, they just may not know it yet. There is always someone worse out there and I will focus on helping others. And in turn my troubles are not so bad after all. The pain is tolerable and everything that begins, ends. : )

I forgot to mention my doctor recommends exercise. He says you need to have a lifestyle that helps your Crohn’s and the rest of the well being of your body. Just be smart about it. Try things. Not everyone is the same. I eat salad, fresh fruit, just not three days in a row of it and CHEW! CHEW! CHEW!. He says he wants me to be running marathons! Prednisone and antibiotics and remicade of course is what usually brings me back from my flares and I don’t have too many because of my healthy way of eating and exercise – mind, body and spirit!

I really enjoyed your post. Our son was diagnosed at 16 months. He will be 6 in July. It’s been a crazy five years, but every bit of input I get from others inspires me :)

Hi Ali, just cam across your Blog, while debating whether I can wait a coupl of seconds more, before hobbling to the bathroom. Lol. I am going through a rotten flare up, and they seem to be getting more often again. I was first diagnose when I was 15, am a good bit older now ha ha. but have had years of remission in between bouts. Love your blog, you are so honest and have a really good spirit for life. So things will get better. even if you have the occasional downer, as I have. Take care. xxx

I am so sorry that you are going thru so much for so long. My son Michael was diagnosed with in 2013 @ the age of 9. It has been a long hard road for him & everyday I pray that he will get better. Currently he is getting monthly IV Remicade infusions & they have helped a great deal. Michael gets embarrassed about the fact that he has Chrons & Rheumatoid Arthritis but it helps that he knows he’s not alone. Thank you all for sharing your stories and let others know that we aren’t alone.

David Watkins says: July 10, 2013 at 10:36 pm

Andrea,
Thank you so much. I would love to Chat with you more. You are amazing thank you for being honest and having fun in life. Brian is cute and sounds like a great guy so Try to cut yourself some slack there,I am so glad i found you I was diagnosed as HiV Positive 5 years ago and then found out I had crohn’s and stills( a form of adult onset juvenile arthritis is how they explained it to me) 2 years ago. I say that i collect chronic conditions. i did a 60 day juice fast when i first was diagnosed and it helped a lot. But incorporate eating raw fruits and vegs, to keep your amalyase production up. I feel you about the working out I just became a Personal Trainer because I refuse to be defined by my struggles. On eof the things that has helped me the most is this book “How To Be Sick” by Toni Bernhard.

David Watkins says: July 10, 2013 at 10:41 pm

Sorry I was addressing that to you Ali, but typed Andrea name since she was the post above me. I just had my first serious flare up the last few months and am finally getting back mind is the last to return.

Hi, I was recently diagnosed with crohns, I am 21 years old. It sucks so bad. I never want to go out, my stomach will swell to the point i look like i am nine months pregnant after eating two slices of pizza. I am going to give juicing a try. Do you think you could send me some recipes? I have a juicer I just can’t seem to make great tasting ones. I am on Asacol could you comment with some of the side effects you had on it?

Hey girl, dont know if you still check this blog but in case you do please try taking a supplement called wormwood. You can find it for cheap on amazon.

I used to have all of the same problems you have with even more such as skin rashes/lesions, mood swings, feeling cruddy all the time, etc.

God blessed me with discovering this supplement, and ever since taking it (and even when I forget to sometimes) I have been rid of every digestive issue I have had. My health is golden.

Wormwood kills parasites and pathogens living in your intestines. This is what initially upsets the flora balance and leads to a host of problems that doctor all categorize under the name of crohns disease. Then conveniently have scripts ready to prescribe you for it.

Please everyone give wormwood a shot. God bless.

Will i hope you are right, i’m going to give this a try. pray for me that it works. thank you for the information

I was doing some searching about seeing a commercial about joint juice and if it is a benefit for my Crohn’s. doing so, I happened upon your blog. I am not a blog type usually but thought I would leave a comment. I was not diagnosed with until my intestional tract ruptured suddenly when I was 26. Im 48 now. As an early teen i had terrible stomach pain constantly but back then doctors told me to take zantac that was a script back then. So at 26 all hell broke loose on Thanksgiving day where I ruptured and rushed to the hospital. Not knowing I had Crohns at the time I fell into a coma state in the hospital until after that Christmas. The hospital had no idea I had it either and did exploratory surgery opening me from my sternum down past my belly button. They removed half of my large intestine and two feet of my small intestine. i didnt recover and my parents called in a a priest to read my last rights after being notified by the hospital that I was near death. That same night a doctor told my dad that that he wanted to try an experimental drug designed to kill all of the bacteria in my body, but needed it immediately. The drug could only be obtained several hundred miles away and my parents had to sign off on any issues. My dad who was just a regular hard working guy and hired a plane to fly it in. YES, This IS ALL TRUE. That night after arriving and treatment I did a sudden turn around. I woke up December 27th to being tied down, doctors with clipboards all asking me lots of questions about my experience in a coma and a line of staples liker a large zipped running down my stomach. Jumping ahead to today….yes I have diarrea daily and the same symtpoms lots of you have written about. Since that time I have worked through my disease mostly trying to keep my problems to myself as much as I could and try to carry on as normal as possible in my life without dragging others into it as much as possible. Ive been pretty successful over the years unless it was unavoidable. I have 3 wonderful and beautiful daughters. I struggle with major discomfort everyday and its terrible. But to all of you on this blog and to that girl from New York worried about losing her boyfriend…..my advice for what its worth? Dont worry about that! If he loves you he will stay with you forever! I have been divorced for the last 10 years now unrelated to crohn’s. All of you with this terrible disease keep up the daily fight and and try to enjoy and cherrish your life everyday no matter what or what you think others are thinking about you with this disease and symptoms. I am not an expert and just a regular guy. This is the first time ever I have ever commented publicly about my disease. I really dont know how blogs really work and keep going? But I wanted to chime in with my experience with it and if any of you out there feel bad and want to share thoughts and comments, feel free to ask and i will share as much about my condition and feelings if it may be of any help to you. most importantly! Keep up the fight and take care of yourself and LIVE YOUR LIFE THE BEST YOU CAN FOR YOU AND THE OTHERS YOU WANT IN YOUR LIFE! DONT CARE WHAT OTHERS THINK! Remember! nobodys perfect and we all have faults and will have health issues some day. Some of us younger in our lives and some of us when we get older. But we all have to love and care about ourselves and not care so much about what others think. People will always come and go in your life and that ones that really care will remain. Take care all of you!!!

Hi my name is Shirley! i have just read you blog. i also have Crohn’s. i was told i had it about 5 yr’s ago but have delt with the problem my hole life as far back as i can remember. i had the blood work and poop test’s done and boom there it is, i have had 3 colonscopy’s. the 2nd one i had i had to have 12 inche’s of my intestin’s removed cause they found a polup the size of a golf ball, they tested it and it was filled with pre cancer.i am due for another scope. i have alot of trouble with food and Juice’s. i am 42 and my life is also day by day. i am sorry you have this to. by the way your BABY is super cute!!!!!

Gisele Maillet says: August 3, 2013 at 3:13 pm

I’ve just been diagnosed with Crohn’s and the specialist has given me two weeks to think about it before he starts me on medication….what I’ve read of the medication scares me actually….was just wondering what your opinion is….

Just wanted to share my experience with my disease and how I have been managing to live with it.
I was diagnosed with Crohn’s disease at 17. I was suffering from the worst stomach pain (worst than when I had appendicitis) and explosive bowels for about a year and a half and weighed 86 pounds (I was 100; I am not a large person to begin with, I am 5’1 on a good day, but lost 14 pounds from malnourishment) before I was diagnosed. I am 24 now but I have been able to control my symptoms without steroid medication. I have other autoimmune disorders and they tend to show up when I’m under extreme stress as well; psoriasis, eczema, asthma, arthritis, etc. Due to my OCD and PTSD its like I was constantly under extreme stress. The only thing that has been able to help me relieve my stress was Prozac which I found in the long run to reduce my flare ups. I have been on crohn’s specific medications before, all of which had horrible side effects; prednisone, entocort tc (which made me really sick, I caught the flu and my immune system wasn’t strong enough to fight it off which hospitalized me twice because I was coughing up massive amounts of blood), and methoprednisone (made me eat and piss like there was no tomorrow along with a rash all over my body) but none of them treated the root of my problem (which was, well, me). I was a dental assistant and I worked where there was a one stall bathroom which was so embarrassing leaving it when there’s patients waiting to use it or worst coworkers who I saw on a daily basis would cause my stress to go overboard. It was like a never ending cycle until I decided my thinking was off. I haven’t had a real bad flare up in 2 years. I haven’t had to miss class or work because I was too embarrassed to use the bathroom or because the pain was so unbearable, all I could do is lay in bed in a ball praying for the pain to end. I never found exercising ever a factor in whether my crohn’s would flare up EVER! However, when I would flare up I couldn’t even get out of bed except to go to the bathroom where I would pretty much crawl to so exercising was out of the question for me anyways.
So pretty much I am saying
1. By not taking everything so seriously
2. Going on medication for my OCD &PTSD
and
3. Changing my diet (nothing too acidic to irritate my system or oily). After my diagnosis for a long time all I ate was chicken and rice or spaghetti with no sauce.
I have been able to reduce the severity, length and occurrences of my flare ups by these steps. I am not cured by any means but its a lot better than before.
Not everybody has the same root of their disease, and I am not saying that these steps will help everyone but if my steps and experiences can help a single person then it was worth it.

Magdalena says: August 14, 2013 at 5:28 pm

Hi Ali,

Wow finding your website has been so freeing. You are the first person to address that guilt that comes with having a flare-up and being sick, feeling like a burden on your partner, and just the general feeling like you might go crazy.

In the last year I got some control over my body and started running and ballet again, but now that I have a life, the flares are that much more depressing, anxiety prevoking, and I am handling them much worse.

All things you mentioned mentally pretty much are something I have been struggling with. There are moments where I feel like i might mentally break because I cannot justify why my body can handle some salad one day and make me sick and puke it up the next.

Of course, because I am thin and I do exercise (which really helps with bouncing back), people have no qualms about telling me I am doing it to myself. While they sit on there asses, binge drink and eat junk food, they still get to criticize.

Can I ask you where your crohn’s is located? How you know you are about to flare? And how you deal with it when it comes to activity, and suddenly trying to push through it?

God you have amazing courage to do this, and its so inspiring to see your mindset, too many people just give into the label and stop trying….

hi my name is Fleta, i have had really bad crohns and iBS for over three years now with lots of blood. they Doctors have me on meds and i feel even worse. plus i think the meds are making me sick. i have tried differant diets i have found on google but none seems to work. i feel like i may not make it this time. pray for me

It has been really insightful 4 me..I have recently meet a great guy who from early on shared he had Crohns but he doesn’t share all dat information with me. I want to be able to be der for him without mothering him how can I be an understanding and supportive partner. He has such positive energy n vibes but he actually deals with a lot more Dan he shares from what I’m reading

I am 22 and have Crohn’s and this made me LOL :) We have very similar mindsets. Im so sick of my friends comparing their period cramps to my stomach aches!

Hi Ali. I was diagnosed with Crohn’s 5 days ago and find it incredibly refreshing to hear from someone ‘real’ after all of the medical information I’ve been handed. :) Your blog made me smile for the first time in 5 days-thanks for sharing.

Came across this while I was flaring and it was really supportive. I’m right there with you but hope by now you are on the mend. Not sure how I keep going sometimes, but then I always remember that it could be a lot worse.
Take care :)

ANN LANDMAN says: September 22, 2013 at 3:58 pm

i feel so bad for people with crohne i have had it for 40yrs. i am so sick of this mess i am on remacade it helps 2 week then im back sick again thanks for your input

If Brian ever leaves you, I’ll gladly take his place. I’m 21 years old and just recently diagnosed with crohns… Shitty.. I know… But I’d just like to thank you for this blog entry, it’s great to see someone in my shoes with such a positive attitude and sense of humor

Thank you so much for being real….I’m tired of all my doctors mumbojumbo. I’ve been quite terrified the past few weeks as soon as my doctor even suggested Crohns. And in doing further research I’ve worried myself more. but your blog gave me a reality check. I will learn how to live w/ this disease in time. But I swear if I hear another person tell me the pills will improve my quality of life IM gonna lose it. My days r spent trying to keep food in my body on either end and taking care of a three year old.

My friend has been doing “Hallelujah Acres” diet…and says chrohns disease no more…I can get his info if you like

I have Crohn’s as well. Currently going thru Hell with a bad flare. I can undersand about te relationship thing. I’m miserable a lot over how I feel and it get miscontrued on me being s mean and nasty person. God bless.

Also just FYI, pizza is really hard on me. If I eat it its a guaranteed hard flare. A few slices can out mentionn the hospital…

As someone that also lives with crohns it’s nice to hear from others dealing with the same issues day in and day out. I applaud you for staying active and not letting it keep you from living you life to the fullest.

Your a cool and most of all strong woman, I laughed at all your symptoms as I could relate to every single one and the forgetting some of your symptoms was so so true, when I have explain my crohns I forget stuff like my hand and legs aches, the depression when your mind is actually in pain from the pain. I’m Australian and have 3 kids and been living with this crap since the age of twelve but I can remember the diahrea earlier. Just for the record I’m in so much pain today the I resorted to the internet for something and came across your blog and you know I felt better after reading it and laughing as I love to laugh and make people laugh as laughter is the best medicine so keep smiling girl and don’t worry about Brian he knows hard not to when you live with the person but he’s a good guy the spinach he knows. Anyways you made me feel so good that I wrote half page essay. Good luck

I absolutely understand what you are going through. My hubby and I have been through a lot with disease, talking to him helps me out and having him there at the DR app so he knows what is going on helps too. But I understand I haven’t had crohns as long as you but it is all the same taken everythign else you have on Remicaide 700 every eight weeks. Believe me when I I say I know the stress that this causes and that keeping a job that understands without having to go into detail before FMLA kicks in sucks. YOu know the keep a spare change of cloths close but the bathroom closer is not fair. The questions I get is why how and y do you walk funny… lol.. no not that but its the arthritis that has crippled me and I am only 36 raising 2 boys that I can not keep up with go on field trips unless I know that there is bathroom that I can use. making it half way to work and them having to go home because I was not fast enough…. It is hard does it get better???? that;s the question my grandmother lost all but 1/4 of her intestines and 3/4 of her stomach to this so I am thankful for the Remicaide so thank you I needed to read this to feel like I am not alone Thank you truley

cheryl dziarkowski says: December 1, 2013 at 9:09 am

Hi my name is cheryl. Please email me asap! You sound identical to me and I would love to chat with u aboug this awful disease

I am sitting on the couch right now overwhelmed. I just got back from the doctors 2 days ago and got bad news that I am having a bad flare-up (like any flare up is a good one)… I am a runner and signed up for my first marathon (LA Marathon in March 2014) but I am couch bound for the time being. I am starting to make a Facebook page and website to gain money for CCFA to help fabulous people such as ourselves ;) you might notice my website sit up and running— I got really drowsy and fell asleep when I jut started to get momentum. But it’s 4 am and I stumbled upon your blog and it made me feel like I had a supportive sister in the house. My mom and grandmother have/had Ulcerative Colitis but had their colons removed and have been golden ever since. If only I were so lucky. I was also diagnosed when I was 7 and 20 years seems like a lifetime. I appreciate all your humor and light-heartedness. I hope I can bring the same smiles to my readers (once I get started!!!) ((hugs))
Allie

Wow, you have summed up my life for the last 15 years, I am currently on Humira and have just gone through a year and a half of pain and suffering from a stomach ulcer, now that, that is healed we are on to a hystoremtomy because of my crohns, I also have extreme dry eyes. I am married for 22 years but also go through the same guilt worring if my husband will some day get sick of hearing me say my stomach isn’t good or right today. I am finding that so many other things are effected by Crohns Disease I learn something new it seems almost everyday. But reading your blog really made me feel, like I’m not alone thanks for that….

My girlfriend has Chrones. I am new to this disease and we have only been dating 3 months. But we fell in love so I want to be able to understand it in order to be more supportive. I think Doctors dont do a good job of portraying the real issues. I appreciate the blog and enjoyed the read. You make it much easier to understand and I appreciate you sharing. I would love to see some progress updates. Best of luck and thank you!

Sincerely,

Jeff

imran gahni says: December 23, 2013 at 3:09 pm

Hi i have been suffering with crohn’s for bout a year his very annoying and hard work at times am 25 years old and at my age eating even drinking with the lads nights out can be hard to stay off after the NY am going to record and do a good diet plan when am off the steroids the pain and toilet is so bad hope any body with this finds the best ways to keep flares at the min and good luck where sol -jas haha great blog also and has you have had this for 20 years WOW any info for me be greatfull take care merry xmas x

Hey;

I have Cohen’s; I was just told a year or two ago that I have it. I have been worrying ever since that it was the end of my life given all the horror stories i have heard.

But reading your blog and seeing your pictures (you are very hot looking) it seems to me that have having cohen’s is not the end and it’s seems to be more a pain in arse than anything.

Like the blog and thanks for cheering me up!

Jennifer Curtis says: January 17, 2014 at 6:10 pm

Like you i have had this disease for most of my life it sucks and nobody really understands the pain or how everyday is decided not by you but your symptoms.I’m tires of people telling me not to exercise or do whatever makes you feel better omg if I can go I’m gonna play with my kids or exercise cause when were down were really down. I have four children 20 girl 16 boy 10 boy 6 girl almost died given birth to each one but worth it my first one i had when i was 16 I’m only 36. Thank you for sharing the ugly truth about this it makes me feel not so alone and all we can do is take it one day at a time if anybody around cant handle it to bad for them cause even though this is part of our life a big part but in reality it is not what defines us our what we have to offer this world .

OMG—just read this part of blog and it’s sounds very familiar!!!!
I’ve Crohns!!! (Ahem spelt right!! Haha) was diagnosed 15 yrs ago!
No one truly understands the urgent need for the loo—my worst time is usually as soon as I land off a plane in a foreign country because I have no idea where the loo is—so of course that makes me need it even more!!!
And yes I really want to punch people when they say I’ve had the worst stomach ache ever!! Think I’m getting Crohns!!! No you are not!!! Deal with it and move on—we have to deal with that on a daily basis day in and day out no release for us!!! These people!!!
Keep running!!! Xx

First of all i want to thank kristina for the post she made on how Dr Adams helped her in bringing back her lover before christmas. At first when i saw the posting i was so happy and in the other hand so scared,That this might not be real, Then i decided to give it a try in which i contacted Dr Adams and told him how my lover left me for another lady for the past 3years and i have been lonely and depressed without him,So i told him if he has helped anyone called kristina and he said yes, that was the lady he helped in bringing back her lover before christmas. I said good and i told him that if he can help me in bringing back my own lover,He laughed and said once i have contacted him that my problem will be solved. He said that my lover will be back to me within 24hours and do an unexpected thing for me. i said really, Truly when the 24hours was completed i got a text from someone saying am sorry then i decided to call the number i saw it was my lover smith voice. I was so happy he was begging me on phone, That he is ready to do anything that will make me happy in life,So i told him to come over which he did,As he was coming he came with a brand new Car as gift i was so happy and made me had access to his account to prove to me that he is not going to leave me for another lady,Am so happy today and am also thanking kristina for posting this early. Dr Adams you are truly a man of your word. He can also solve any kind of problems in this world. Friends you can contact Dr Adams on his private Email dradamsjohnsoncentre12@gmail . com

I LOVE your blog.. I was diagnosed in July a week before I turn 40 years old, the cramps and back eight have been extremely horrible the past week but I learn over the past couple of days doing stretches and relaxing the muscles in my stomach have really help why I don’t know but they help.. Any advice you can give me would be so awesome thanks for being someone who understands that Crohn’s is a very very horrible disease

Hi

Diagnosed with Crohns late 2010. Ex bodybuilder and ex Army officer so the weight loss hit me hard. Juicing has been a godsend. Mix in rice protein and my body is coming back.

Thanks for your post :)

Thank you SO MUCH for writing this. I was diagnosed with ulcerative colitis at the age of 7, though I probably had it for a while before then, and then had a total colectomy at the age of 11. Less than three years later, I was diagnosed with Crohn’s and then Celiac was added to the mixture. You literally took all the words I’ve always wanted to say exactly out of my mouth. Kudos to you for expressing what I wish all people knew and understood about living with these illnesses!

Diagnosed in 2012 and got absurdly skinny, like really unhealthily skinny. For the past year I have maintained a strict diet and have gone to the gym 4-6 times a week. Got my weight up to 160 at 5’11” and look like a normal person again! crohns sucks but hey.. whatcha gunna do?

Latasha curley says: March 27, 2014 at 7:48 pm

Gosh Peter Sorri 2 hear that I lost a lot of weight myself wanna knw how 2 regain mines

superstar says: March 12, 2014 at 5:15 pm

:)

Latasha curley says: March 27, 2014 at 7:46 pm

Man all I can say is your a very strong person witaa positive side and I love that….may God bless you….you know reading your blog maded me smile and cry cause all tha way u feel is tha same on my end cause am Fightin wit tha same illness…been tryin find a friend 2 talk that understand wat am goin thru if u would please contact me my email address is 34wynettetc@gmail.com I would 2 her from you r anybody else of that matter….feeling so lost and alone

I completely understand everything. I had got it out of the blue one day. When I was 19. And dont have money keep goin back and forth to doctor now. So I live with it. I still dont know really how to deal with it. Every time is deffent. Only thing that dose help is pain meds. Er visits all the time makes me look bad and sometimes they dont help me. Please tell me what to do. Email best to get to me. Petersjason27@gmail.com

Christian Anheluk says: April 17, 2014 at 11:39 pm

Dear Ali,

I’m 18 and have been living with crohn’s for ten years. I had emergency surgery when I was twelve and they took the awesomest 10 inches of myself away from me. I was just wondering if you’ve ever had surgery? It also intrigues me that it seems you have frequent symptoms. I hope the remicade fixes that, but I know how you feel wanting to go natural. You know? Let your body run free and live healthy and all that jazz, but aren’t you afraid of a build up of scar tissue or a painful obstruction? I commend you for your courage and congratulations on the baby boy??? I hope I am correct in saying that! :) Best of luck, and some day? I hope we can call each other Crohn’s survivors!

Crazy Christian!

Ali,
All I can say is thank you. I was wondering if anyone else felt like I do. I am so terrified that my finance and I won’t make it to the alter come this October first. I’m so scared he will think that I really just have too much baggage. I’m terrified that he thinks I’m just a horrible house keeper and I won’t make a good wife. Not to mention the lack of energy which means lack of sex. But at least I now know I’m not the only one who suffers the way we do. That I’m not crazy or lazy or the one I heard for overt a decade is I’m a hypochondriac. And just about the time I find out what is really wrong with me I loose my insurance and I don’t qualify for assistance…… This disease SUCKS!! God bless you for this blot and the hope it inspires. God Bless and take care.

Heather says: May 18, 2014 at 3:03 pm

I laughed at some of your descriptions. Good writing. I too have Crohn’s and have spent the last 27 years researching and trying different alternative routes. I would never say that it does not have a cure. Yes, that’s the prognosis in the medical community. Sadly, the truth is, the docs have no intention of curing you or finding one, they just pump you full of drugs. I was on Humira for about 4 years (at a cost of $1700/mo. – did I mention how profitable this is for the drug companies?) until my heart started beating at 170 bpm when I laid down to sleep. Cardiac doc said it was the drug as he had seen it before. I went off it, tried raw milk, which was amazing, but illegal where I live (did a legal cow share until the farmer had to quit due to exhaustion) and then made kefir for the probiotics. Probiotics are hugely important. Have been great ever since. Except for today, where I feel a bit off. I’m presently looking into herbs like slippery elm, aloe juice, marshmallow root, etc. Oregano oil is also excellent.

I have looked into the work of Jini Patel and it is right on the mark. She cured her Crohn’s and is from a family of MDs. I have most of her ebooks, very reasonable. Never, ever, believe that you can’t figure this out. Hopefully, you’ll soon see that conventional medicine is not the way to go. The joke with prednisone is that when you go on it you may have one disease, when you go off it you have 5 more. It works in the short term though. I’ve tried all the drugs too and they tend to make me worse. The docs will call you noncompliant if you refuse the drugs but you have to take charge of your own health, you’re just a number in their eyes.

The other diet I would highly recommend is the Specific Carbohydrate Diet by Elaine Gottschall. The book is called “Breaking the Vicious Cycle.” It’s the SCD diet for short. Works extremely well. Good read. There is now a GAPS diet which is pretty much the same as Elaine’s work, developed by a doctor. Elaine is the pioneer here. Also, try a naturopath but for goodness sake, don’t get caught in the allopathic mindset that you have to just take the drugs and endure it. The internet abounds with info, it’s your job to sift through it. Never say never. Good luck. Oh, get rid of the junk food too, it’s bad on any level whether you’re sick or not. Buy things that aren’t in packages and that have no labels, i.e., fresh, real food.

russ brazier says: June 4, 2014 at 11:34 am

I have crohns and i work and work add more stress each day and moan about me going toilet to many times

Lisa Kelley says: June 22, 2014 at 9:44 pm

Thank you so much for sharing. I feel your pain, literally. I am in ,what I hope is, the end of a two month flare up. It has been miserable. I am two weeks into a 3 month steroid protocol, which is finally helping a little. The worst part for me, as you mentioned, is there is no predictability as to when I will be able to leave my house in the morning. I really miss being able to go for a run or work out regularly during flare ups.

First of all, you’re very beautiful (no I’m not hitting on you, just figured you could use a reminder :))
I’m truly sorry to hear about your crohns issues. I’m a 26 yr old male and was diagnosed with crohns last summer. I went from 130lbs to under 100 in no time. 7 or 8 months from my first trip to the bathroom until I was diagnosed…..it was HELL. Thankfully prednisone saved my life, and i gained all that weight back in just 3 weeks. My life returned to normal as if I didn’t have it at all. About 11 months after my initial flare up I started to feel that pain again, lasting about 30 seconds-a minute. I went back to the doctor and he bumped me up from 1 azathioprine capsule a day, to 2. Thankfully it’s been 3 months and I feel GREAT!! no trips to the bathroom, no diarrhea, i eat whatever I want without any pain.
My doctor said that it’s worse to get crohns younger, or older than 25. I know that pain all too well and again I’m truly sorry that it’s affecting your life as much as it does. Dunno if you’re religious but I will say a prayer for you.

Eileen Richards says: October 31, 2014 at 10:55 am

Thanks for that made me laugh, very interesting. I have had crohns for about 5 years so found your blog very informative. My main problem is incredible fatigue some days and thankfully not much of the other stuff. So I must be in remission. Keep on posting and I will keep on reading. Thank you.