We are in the Top 11 Crohn's Blogs on the Web!

Woohoo!!! Healthline editors chose us as one of their favorite Crohn's and IBD blogs on the web!!! 

To see the full list and read some fantastic blogs, check out:

http://www.healthline.com/health-slideshow/best-crohns-blogs 

Congrats to the other bloggers, it's so nice to get to know you!

Swing Shut Toilet Lock

The twins are getting mobile. While they are only crawling and rolling, Liam stomps around with Frankenstein-like strides when he attempts to walk. What does this mean? Baby proofing!

I had already baby proofed all the window treatments, the outlets, gated those babies into the living room like jailbirds. Since I cannot keep them in the living room for the next two years, the bathroom seemed an obvious place to continue with my efforts. Outlet covers, check! Doorknob covers, check! Then came an unexpected turn of events...the toilet seat latch...look at this photo. This is the one I bought. PLEASE IDENTIFY WHAT PROBLEMS COULD ARISE-->

Close your eyes. Take yourself back to the last time you needed to book it to the bathroom.  While running, relief is in sight...and then you get to the toilet and need to use both hands to expertly open this latch system. Anyone else scared for me?! 

Maybe it is not as bad as it seems. I will let you know. I am terrified that white knuckled I will not be able to successfully get the cover up in time. EEEEE.

Yes, this was a moment of parenthood I was not prepared for.

Specific Carbohydrate Diet...in my world

Hello autoimmune disorder...how shall we battle you this year?


Since the prednisone after the boys were born...I have not gone on any medication...let's be honest, Humira and Remicade gave me drug-induced LUPUS...and the only biologic left is Cimzia. I do not want to try this unless absolutely necessary. Do you know what's worse than going to the bathroom 12 times a day, losing crazy weight, and suffering from abdominal pain? Doing all those things, but barely being able to move because every single joint is on fire...not to mention your skin actually hurts. Potential Alternatives?


After lots of reading, I decided to try again with a change in my diet. I discovered the Specific Carbohydrate Diet. Have you heard of it? It is a diet, a lifestyle, for those suffering from Crohn's, UC, Celiac's, CF and other bowel issues. By removing the foods that have crept into our modern diet (grains, pastas, breads, complex sugars, etc.) you start to reduce the harmful bacteria in your gut...bottom line- it is lactose-free, sugar-free, gluten-free and grain-free. Now, you are thinking...so what the heck do you eat?!

Here is a list of foods of the SCD legal/illegal foods! 

Strictly adhering to the guidelines, I followed the SCD for 2 months...and I was very hungry!! Two infants, no time to cook, no sleep...just was not working. So I made it work for me. I introduced brown rice and gluten-free oats back into the equation. Lots of fruits and veggies, cheese (with .05% lactose content), homemade yogurt, and occasional meat choices...and I am doing VERY GOOD!  I'm not perfect, I do cheat occasionally, and suffer for it. I cant help it, life is short and I am a foodie!


This diet is worth trying or a reasonable variation of it:) Make it work for you- Revise the diet to see if some alterations help your gut! I found the following books and recipes very helpful:

Breaking the Viscous Cycle by Elaine Gottschall

Eat Well, Feel Well by Kendall Conrad

Recipes for the SDC by Raman Prasad

**An aside- make sure you are getting enough Vitamin D! Deficiency is very common for those with Crohn's- and with indoor winter activities, even more so! 

Here's looking forward to a lovely spring and some awesome D!

It's been ONE YEAR

Good gracious, it has been one year since I posted last...I must get on the ball! Granted, it has been a BIG year. The twins were born in May so it's been a little difficult to find the time to post BUT I have a new idea. Drum roll needed. Baby laughter can be heard in the background.

The direction of this blog, in addition to what/how I am trying to manage my disease, will have a new twist. Let's look at being a mom (or parent in general) with Crohn's and how that changes things. You may know what it is like to be white-knuckled and need a bathroom ASAP. Now imagine, you have two screaming babies, what they want you have no idea, and all you can do is put them in a safe space while you high tail it to the Loo! Phew, made it.

Liam and Conor are 9 months old now, and each day brings its hysterical moments. It is also the hardest thing I have ever done in my life. I am extremely lucky to have an awesome husband as my partner in this adventure. The other day I captured this video. Conor, for some quirky reason, thinks bodily function noises are THE BEST. Burping, dry heaving sounds, spitting sounds...please note, I am not actually spitting on him:) It is kind of ironic that he thinks these sounds are funny, don't you think?

Looking forward to sharing 2012 with you!

Milk and Meat

I was a lactose-intolerant vegetarian....and loving it! And then, these tiny little boys come along and all of a sudden...all I want are bowls of cereal ( I am grateful for lactaid), yogurt, grilled cheese, and any pork product I can get my hands on. Not fish (strong, strong strong fish aversion still going on), not chicken (AP Biology turned me off a long time ago) and not beef (so tough to digest). We are not talking about unreal cravings, just a strong preference for meat and milk products. What's a girl to do?A rack of ribs is staring me in the face.

For some, pregnancy can have a positive effect on Crohn's symptoms. Did you know that when you are pregnant your immune system is somewhat suppressed? I just learned this...It makes sense- this happens so that your body does not reject the little one growing in you and treat it like an invader. Your body attacking invaders is also why conception can be tough, and was tough for us- my body was treating EVERYTHING like an invader.

If you are considering pregnancy, I highly recommend collecting as much information as you can. Here are some of the topics I was concerned about:

• conceiving/fertility
• getting into a "good place" with my symptoms: how, for how long, would it stay?
• medication/safety: during pregnancy and breastfeeding
• my prior abdominal surgery and scarring (which could affect the fallopian tubes): tests can be done to check!
• flaring during pregnancy and immediately following the birth and action that could be taken
• my immunity if I were to continue on biologic medications (which I couldn't, but that is something to think about)

So I perused the web, asked my GI Doc a lot of questions, asked my ob-gyn a lot of questions, sought a consult from maternal fetal medicine at a phenomenal local hospital, talked to my mom, and talked to my husband. We made decisions that were right for us.

And now I want milk and meat.

Perhaps I need the iron? The calcium? Is my kind diet a lost cause? Of course not. If you are interested in learning more about kind food choices and exploring a vegetarian lifestyle to help you with your IBD symptoms, I was incredibly inspired by this book (thanks for the recommendation Becca!):

The Kind Diet by Alicia Silverstone
Her blog: http://www.thekindlife.com/

In the meantime, I will work on balance. 

Remicade, Treatment 1

Not so bad! Arrived at 9:30 am and was done by 1:00pm. I guess the first treatment takes the longest...

Because Remicade is so expensive, the drug is not mixed until you arrive on the premises of the doctors' office. After Laryl, the fabulous nurse practitioner, set me up in one of the exam rooms (although you may have an entire Infusion Room available to you at your local hospital), she took my vitals (ie weight, temperature, blood pressure) and determined my treatment dose based on my weight.

She began the IV with a simple saline solution, began a VERY slow drip, and added the Remicade to the solution. Over the course of 2 hours, Lauryl checked on me repeatedly, monitored me for any allergic reaction, took my vitals and over time she increased the rate of my drip once she knew my body was doing well with it. Phew! A big thank you to Dr. Barry Ross and Lauryl for making this first infusion as painless as possible! It helps so much to be surrounded by kind, competent and passionate professionals...

How can you prepare for this infusion?

1. Eat before you go. You don't want to be uncomfortably hungry during the infusion.

2. Pack a bag of fun! You will be there for 2-3 hours or so, bring things to entertain yourself. Book, cards, Nintendo DS, DVD player, magazine, etc. OR prepare for a nap! This can be much wanted relaxation and meditation time. A travel pillow and blanket can make this a much cozier experience.

3. If you are on prednisone, I recomend bringing a snack! That can be a long time without food for those of us on steroids! I know I get ravenous!

4. Go to the bathroom before you begin but yes, you can use the bathroom during the infusion, you can roll right on in there. No worries. Just don't get tangled on your IV:)

Back up...What is Remicade?

Crohn's Disease is an autoimmune disorder. Our own body attacks our healthy tissue causing inflammation, particularly in our small intestines. Remicade is a biologic medication used to treat the inflammation before it occurs by blocking the actions of TNF alpha, a naturally occuring substance in our bodies (WebMD, 09). Many of the drugs we are familiar with when it comes to Crohn's actually treat the inflammation when it shows up. Remicade binds to the TNF alpha, preventing it from signaling cells to attack healthy tissue, before inflammation.

I chose to try this treatment because the typical pills and surgery just haven't worked for me. Like any drug, there are potential side effects, serious and sometimes fatal infections, so it is very important that you collect all of your information and ask lots of questions before making treatment choices.

My Story

"Excuse me, can you tell me where the bathroom is?"


"Are you pregnant?" "Nope, just bloated because of mass quantities of steroids, but thanks for asking!"


"Any accidents?" "Any urgency?"

I hope you have not lost your sense of humor. Chances are if you are in remission, you can smile at these questions. And if you are in the middle of a flare-up, you are just groaning ...


Welcome to my life. I am 25 years old and living with Crohn's Disease. As I search online for enlightenment concerning this disease, I am aware that not enough people talk about it! I want to hear your story, I want to learn from you and your experiences. I want you to learn from mine. It also makes it easier living with this disease when you know someone else has also raced to the bathroom or driven white-knuckled all the way home. Of course, our disease is unique to each individual. That's what makes it such an adventure!


Luckier than most, I have an incredible family support system that begins with my mom. She has suffered with Crohn's Disease since age 20. I know she feels bad that genetically she passed on this disease to me, but I don't feel bad. She gave me the best genes she had plus Crohn's. It could be a lot worse. In addition, my husband is amazing. We actually wonder if any other couples talk about bowel movements as much as we do. It is typical of him to point out bathrooms in restaurants and loyally follow me into every health food stores we see. We have been together for 6 years and he has done as much research on Crohn's as I have. He doesn't grumble about our very typical and unflavorful meals and for that I am very thankful.


I was diagnosed at age 17, after a rocky soccer season composed of "run, sprint, dribble, race to the bathroom, get back on the field, run, sprint, defend the goal, race to the bathroom." I didn't eat lunch so that I could participate in soccer practice. My pediatrician did not believe I could have IBS and/or Crohn's so my mom took it into her own hands, bringing me to her GI doctor. And you know the outcome. Cobblestoning anyone?


I have never reacted well to drugs and since being diagnosed in 2001, I have never been in remission. At different points in my life I have tried Pentasa, Imuran, Prednisone, Entocort, Cholestyramine, Lialda, Prilosec, and Cipro just to name a few. In 2004, after extreme abdominal pain I ended up with emergency surgery and a small bowel resection. Goodbye 12 inches of diseased intestine...take the appendix with you! Oh, and don't forget part of the cecum. Fortunately, surgery opened my very narrow small bowel back up, unfortunately, it did not help control the Crohn's.


Fast forward- For the past 6 months I have had incredibly active Crohn's. I finished graduate school, got married, got a real job and with all that positive and negative stress I found "normal" to mean trips to the loo about 10 times a day. Isn't that normal? With a 5'0" frame, dropping 20 pounds seems like a lot...


This Friday, March 20th, I will begin my first Remicade treatment. After careful consideration of my options, I would like to be more aggressive about my treatment. Since very little exists as to patient testimonials and experiences with Remicade, I would like to use this blog as a way to share my story.

For those you living with Crohn's Disease or supporting somone who does, you are in my thoughts and prayers. I applaud you and hope you are doing well managing your sense of humor, your optimism and your sweatpants:)