Monday, October 12, 2009

October Greetings

To be 100% have a Sicilian Mom who makes incredible tomato sauce...and to only eat it when I feel like spending ample time in the bathroom.....that is a curse.

But there are worse things! I hope everyone's tummies are doing okay this month! Guess what- I am 90% there!! GI Doc/Hero has given me 2 more months to play around with Humira. I have increased injections to now 1x/wk and it is working!!! AND I am a still a big baby every Saturday when my husband needs to inject me....

HIM: "It's time."
ME: "Nah, let's do it later..."
HIM: "No, let's just get it over with."
ME: "Come on! Inject yourself and see what it feels like!"
HIM: "Yeah Right. "

Maybe, just maybe, I will be able to try for babies soon!!!! The power of optimism combined with plain food, no dairy, no high fructose corn syrup, and no processed foods.

TIP: For those of you who need protein, but have a hard time digesting meat, even if you are lactose-intolerant, I would try Chobani Greek Yogurt! I can eat this! It is packed with protein and probiotics, makes me full and does not make me sick! Give it a whirl!

Thursday, August 13, 2009

Humira Tales

The Humira Pen

Look at the medicine in the window. It's clear, no bubbles, good to go!

Terry prepares to release the button

Hello all. It's a sticky, dreary day in Rhode Island. Perfect weather for blogging. I want to take this opportunity to discuss Humira. While I will provide my humorous, patient perspective, please visit: to learn more.

For those of you who don't know me as well...Quick Recap: I have had Crohn's for almost 9 years. Traditional pill and maintenance methods had not worked to control it or send it into remission. A blockage in my ilium led me to surgery in 2004 where they removed 1 foot of diseased intestine. Reasonable for a few years on maintenance meds, then it got bad, I opted to try homeopathic methods (cause I want to have babies and rid myself of crazy chemicals). Bad idea for me, got worse. Traditional and maintenance methods (with the exception of prednisone) did not work and since no one should be on prednisone for a lengthy time...we have moved onto biologics.

Since I was a lovely rare case and had an allergic reaction to Remicade, I am now trying Humira, which is an injection that I take every two weeks. I have been on Humira for 3 months now.

*One dose is one pen (see above). Treatment 1 is 4 pens, Treatment 2 is 2 pens and every dose thereafter is just 1 pen. *Maintenance breaks down into 1 pen every two weeks.*

Where do you inject? Crohn's patients in ject either in their belly or their thighs. My mom started Humira the same week I did and she prefers her thighs while I prefer my belly. It is essentially, where does it hurt less?! Let us tell you- that injection hurts like a M*F*. Obviously, we can deal, cause we are still on it. I whine the 10 minutes prior and tend to pysch myself out (which is why you can see Terry in the picture- he is the one that actually pushes the button to inject). The actual injection only lasts a few seconds, it is over when you see neon yellow in the window of the pen. After you give yourself a safety of a few more seconds, you can remove the pen and discard in a "sharps container".

The injection site is not tender, within minutes the pain is gone and then...I start to feel like a wimp cause I whined for so long before hand.

The big question: Is it helping?

I think so...I will still on prednisone when I started Humira and we weaned me off of that in the first few weeks of the treatment. At the last doctor's visit, one month ago, my very cool and creative GI Doc decided to tag team my Humira up with another med for a short period of time since I was not showing as much improvement as he wanted- my options- prednisone (steroid), entocort (steroid) or Xiflaxan (antibiotic that only targets the intestinal tract). Can you guesss which one I chose?

Of course I chose Xifaxan! With their powers combined, I have had on average 4-5 bathroom trips a day, I still need 9-10 hours of sleep each night but I am not fatigued during the day and my activity level is up. In a few days I will be done with Xifaxan, let's see what happens with just Humira! Will I visit the bathroom more frequently? To be determined!

Note: If you would like to learn more about Crohn's Disease and biologics, this is a very helpful webcast from Everyday Health.

Sunday, August 9, 2009

Tracking your BM's...

"Any Urgency? Any Accidents?"

When you go to your GI Doc, you may be asked questions like those above. Every time I go, I am asked! I blush, I look uncomfortable, and then I suck it up and try to provide as much information as I can, knowing this doctor has heard it all!

Then, the GI Doc asks "How many times are you going each day? What kind?" Hmmm...what kind? So, let's talk about your BM's. I know, this can be awkward to talk about, but we must press on.

I have created a way to document BM's, so that when I am asked this question, I can have all the facts! Not only can I provide facts, I can actually run statistics on my BM's. And the geek in me emerges! Proud geek.

I made a small chart, see above, and then I printed a bunch of these out (as big as a business cards) on card stock, since they have to last the week. When the week is over, I transfer the information to an excel document. Feel free to use the above chart or make one specific to you!

Left column = day of the week
Numbers across the top = represents each BM, up to 8times/day
Right column = Key to type of BM, designed similiar to a Likert Scale:
1 is ED, the worst, explosive diarrhea
2 is D, diarrhea
3 is P, pudding consistency
4 is SL, the soft log
5 is the log, what you aspire to...
* indicates if the BM was an urgent "must go now!" experience

Please note: If you go more than 8 times/day or if you would like to characterize your poop in a differe way, feel free! This is all patient-specific.

I recently saw this book What's Your Poo Telling You? at Urban Outfitters and then found it on Amazon. It will give you a chuckle and actually goes more in depth as how to document your experiences.

If anything, I hope this post made you smile. At heart, I hope you download the chart, make it your own and become a fantastic advocate on your health!

Saturday, August 8, 2009

Furry Support!

Have you ever seen such a cute face?

Wow, it has been almost 2 months since I posted last! Life has been a little crazy! While this summer has not been as hot or provided as many beach days, it certainly has been full of activities and full of new love in our home.

I would like to introduce you to....HENRY!

Henry is a rescue from down south. He is about 5 months old and we have no idea what kind of dog he is...any ideas? We are thinking terrier, retriever, spaniel mix...Really, he is a pile of mush and loves to be loved. He adores Finn and Finn is coming around to the idea of being a big sister.

He has acclimated to our house, learned quickly- when Terence says "Go find Mommy,"
both Henry and Finn run to the bathroom.

"Hmmm...I want that kong..."

"I will mess you up for that kong- Matrix style!"

I hope everyone is feeling good and enjoying summer.
I hope the tummy troubles have not slowed you down!
I will be posting soon about Humira shots for those who are considering a biologic approach.

Sunday, June 14, 2009

Thank You!

Team Semi Colon

Amelia, Rosie and Maren

Terence and Rosie

Thank you so much to our family and friends who donated to the walk! Team Semi Colon raised $2200!!! Woohoo!!!

Above, you will see our family, decked out in green t-shirts, with our fabulous banner (thanks Mom!) and we rocked the Boston Commons. It was a wonderful day, hundreds of participants, in great spirits and hilarious team names and t-shirts. I am proud to be a CCFA member and I am so thankful for my supportive family. In order, photo includes Terry, me, Eric, Mom, Michael, Maren, Matt, Amelia and Joey. The rents and the sibs:)

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Friday, May 29, 2009

Finding the Humor In It...

So I told my husband "Babe, we need a funny line for our team t-shirts for the Take Steps-Walk for Crohn's and Colitis."

And he came up with a bunch! He's so good to me! I picked the two that made me laugh the hardest, drew an intestine with a black sharpie marker and ...for your enjoyment, here are the final products. The front and back of our team t-shirts!

Some people would think walking around in a t-shirt showcasing a small bowel may be odd...not my family!

For all you IBD peeps out there- here is another story to make you laugh. Last Friday I had my second colonoscopy in two months. I remember nothing about the first one except going in. I was totally out of it! When I woke up I had a full blown convo with my Doc, yet I couldn't recall a thing later on- good thing my hubby was there to talk to the doctor so he could dictate to me what was discussed!

The same thing happened last week... but it gets better! I went in at 6:30AM, was out of the colonoscopy by 8:00AM, home asleep by 8:30AM. Since my hubby works until 4:00AM- he also went to sleep.

Then I wake up an hour later in a FULL BLOWN PANIC! "Honey, we missed the colonoscopy! What are we going to do?!? Wake up! Wake up! Oh my god!" Tears in my eyes. Had I done the crappy prep the night before all for nothing?!? It took a good five minutes for him to talk me down and convince me we had already gone to the procedure and come home....awesome.

Friday, May 15, 2009

CCFA Take Steps

Support Team Semi-Colon!!
June 6th, 2009
Boston Commons

Make a Donation Today!

My family is taking their spirit and love to Boston! On Saturday, June 6th, my family and I will be walking for the Crohn's and Colitis Foundation of America (CCFA) in their Take Steps, Be Heard campaign. We have a fundraising goal of $2500 and we are almost halfway there!

Thank you so much to our family and friends who have donated and supported us already!

Monday, May 4, 2009

Remicade, Treatment 3

Wordles: A Way to Cope

Sometimes you just need a new way to cope...and a wordle is a terrific way to express yourself. Above is my sad wordle. This is how I feel when I am inflammed and depressed- warm colors, everything all over the place! When I am in this state of mind I can only focus on the challenges of getting through the day. In the last few days, this wordle describes me...

On Friday, May 1st, I went in for my 3rd Remicade infusion. It started just fine, but 30 minutes in, it got interesting! It was then I began to fully appreciate the slow drip. Because my mom had an allergic reaction to Remicade in the past, I have always been a little weary. So, for the first 4 infusions I wanted to have someone with me. I am grateful my sister-in-law Vicki came with me this time around.

So there we are chatting about Grey's Anatomy and Private Practice (by the way, unbelieveable Private Practice finale!!!!) and my chest begins to tighten, it's getting more difficult to breathe and I can feel intense heat rising...I felt like my body was a thermometer. That is when we called in Laryl, RNP, and she immediately stopped the drip and made me lie down. Apparently I looked like a talking red beet. Now I know what a hot flash feels like and I do not envy my mom and mom's in law!

After waiting 30 more minutes and flushing my system with saline, we started that Remicade back up. Try try try again! Vicki taught me the card game "Spit" and despite what my husband says, she does not cheat:) So there we are having a lovely time, playing one hand spit. That's when it happens- I get the ITCHIEST palms I have ever had! If Vicki would have left me alone I probably would have rubbed my hands raw. Come back Laryl! And then the bottoms of my feet began to, raw, and I could not stop scratchin'...

The bottom line- after painful skin, excrutiating joint pain, hot flashes and intensely itchy hands and feet- my docs put a stop to my Remicade treatments. Oh Dear. Where are my sweatpants?

On to Humira

Apparently, my body can not tolerate the mouse protein found in Remicade. Pretty depressing, I had high hopes for Remicade. Now, we have a new plan and we are going to try another biologic medication called Humira. This drug is also a TNF blocker, but it is administered by giving yourself an injection under the skin.

My sanity is being tested. I really just want something to work! But I am going to breathe and focus on what my happy wordle looks like instead. The cool colors, the organization. I am lucky in so many other ways. This disease will not rule.

A big thank you to my husband- for sitting through the first two infusions and keeping me laughing at all times- and to both Vicki and Laryl- for getting me through these allergic reactions!

Sunday, April 12, 2009

Remicade, Treatment 2


It wouldn't be Easter if I didn't blow up a Peep in the microwave! And let me tell you, trying to capture it on camera was no easy feat before it deflated!

So, last Friday, April 3rd, I went in for my second Remicade treatment. It took about 3 hours. Same slow drip to begin that speeds up over time. It was uneventful, yay; no allergic reaction (and I hear that usually treatments 2 and 3 are when you would react: fever, can't breathe, break out in hives, etc.). My husband came with me and destroyed me in rummy...

The real excitement happened 5 days later. Around 3am on Tuesday evening I woke up in horrible pain- the muscles and joints in my legs were on fire, as if someone were constricting my legs until I could not breathe. The intense pain only lasted an hour. Through Wednesday, the aches and pain traveled throughout my body. When I woke up, my lower jaw hurt (could not chew or open my mouth), my wrists hurt (as if I had done hundreds of back handsprings, yes, I was a gymnast), and my knees still had remnant of the pain the night before. I felt very shaky throughout the day, very weak and achy. This was not a "I worked out and my muscles hurt" kinda achy- it was "a bus slammed into me" kinda achy. The pain got progressively better throughout the day, completely gone in 24 hours.

Last night, unfortunately, the terrible leg pain started back up, just in my right leg, and lasted only an hour and a half. Elevation and anti-inflammatory helped a great deal. BUT cutest thing ever, bright light in a very dark mini schnauzer, Finnegan, knew my legs hurt. She knew I was uncomfortable. While I was trying to breathe and find a level of control and meditation, Finnegan went under the blankets and layed across my legs! She put her cute little head right on my knee and fell asleep. I am grateful for my furry angel.

Question: Has anyone found anything to counteract these aches? Any nutritional or herbal supplement perhaps?

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Monday, March 30, 2009

Crohn's Casts - Take a Listen

Well, it has been 10 days since the first Remicade treatment, everything is going great. From reading other testimonials, I was expecting to be extra fatigued and achy the few days after, but no such thing. I am still not sleeping (thank you prednisone) but my house is incredibly clean, I have documented every book I own, I am caught up on all my filing, sorted through all my quilting fabric- you know what it's like! You make up stuff to do at 3:30am! Everyone handles medicine differently...

On Wednesday into Thursday evening I did have a bit of a scare. This sounds funny to say out loud, but not so funny at the time- my skin was painful! Has anyone else had this happen to them? It hurt to touch my entire upper body. As if I had bruises all over my chest, arms, abdomen and back. It hurt to wear clothes, hurt to move. My skin was incredibly sensitive. Doctor's visit on Friday- thought I had shingles (viral infection of the nerve roots, pops up when immunity is low)! Follow up with doctor, no shingles, phew! So far we do not think this was a reaction to the drug, just more inflammation. ..

Note: It is not uncommon for individuals on Remicade to develop shingles- check out this article and supporting research.

Crohn's Casts

For those who have not found these yet, these are especially good for the newly diagnosed or friends and family who want to better understand the disease:

I found these very well done, hitting topics that are very relevant and important to consider for an individual living with Crohn's. Turn up the volume! Bottom line: Be mindful of what you put in your body...

Saturday, March 21, 2009

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.

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Thursday, March 19, 2009

Reasons to smile...

Tomorrow I start Remicade and in anticipation I am a little it helped to flip through colorful photos and look at people I love. 10.4.08 A lovely day surrounded by family and friends... This is what living is about. Really living. It's about love.

(photos taken by Anita Bage)

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Monday, March 16, 2009

Super Fast Digestive Tract!

I have found that my commitment to my disease is cyclical. When I got diagnosed I read everything, did everything I could...and then over time, it just became an inconvenient disease that took away my activities and landed me in the loo. And then it comes back to haunt you if you have not been carefully monitoring your system or perhaps, like in my case, you attempt to go off all of your meds (for personal or financial reasons) and then it bites you in the bum.

So, all of the sudden I am 25 yrs old, want a family, and should not even be attempting to get pregnant because I have active Crohn's and it is spiraling out of control. So I am back in the game! My GI says to me "You know you have to go back on medicine, right?" And I just tear up... I loved removing those toxins from my body. But it will not do me or my future babies any good to start off in the heat of the flareup. You start collecting more information, being open-minded about alternative treatments and start putting your trust back in your doctors. Back to Step 1.

Step 1:

Admit there is something wrong with your digestive system and make a significant effort to determine what is going on so that you can move on with your life.
If it helps- visualize!

Sad, ulcerated small bowel: Now you know why it hurts!

Happy, healthy duodenum
Step 2:
Seek out the advice and consultation of experts. This step involves a number of invasive and horrific tasting tests. (But nothing a little flavor pack can't help:)

Step 3:
Play around with (in a safe and controlled environment) all the possible options to heal you.
What do these tests include? If you are new to Crohn's Disease, chances are you have a scheduled appointment for one of these tests just around the corner, or you just went through a slew of them! If you are old school Crohn's, you already know all this. Here are a few of the tests most commonly used to diagnose and monitor Crohn's Disease (from the perspective of a recent patient). If you have any thoughts or feedback on these tests or your own experiences, please share!
1. Blood tests: to search for elevated white cells which could mean infection/inflammation OR to search for decreased red cells which often means anemia; in addition, blood tests can helf identify nutritional deficiencies (ie. calcium, D, B12, etc.) A good blood witch can make all the difference!
2. Barium X-rays: the upper GI series includes drinking a chalky white barium shake, hopping up on the x-ray table and taking a series of x-ray shots as the liquid travels down from the stomach and into the small intestines. As explained by the technician on my last visit, most people take 1 photo every 30 minutes or so, as the liquid slowly progresses in your system and the tests lasts 2-3 hours. Superfast digestive tract- I was up on that table every 8 minutes!!! Done in 40 minutes! Phew! Warn them if you are fast or they might miss it and you will have to start over!!! Ewwwwwww...
Barium x-rays may also be administered through a barium enema, in which the doctor is looking for pictures of the colon, terminal illeum, etc.
What are they looking for? Ulcerations, fistulae, narrowing of the bowel, you know anything that isn't perfect, pink healthy tissue!
3. Colonoscopy (and/or Endoscopy): You prep the day before by drinking what you can only imagine as the worst jug of crap you will ever have to drink, although it is deceiving and looks like water. I believe it is 4 L total. Pat yourself on the back if you can get through 50%! Then you spend time on the toilet, catching up on your reading. The next morning you are admitted to the hospital and are sent to dreamland. The actual procedure is painless, done before you know it! Sometimes you will be groggy, slow-moving, but that is simply from being put to sleep. If you have an endoscopy, your throat may be a bit sensitive when you wake up.
What are they looking for? ulcers, areas of inflammation, questionable tissue to biopsy
Flexible viewing tubes allow digital video and photography to capture your insides at their best and worst. This procedure allows for a more detailed look, grabbing biopsies, and identifying the true degree of the disease. Note: Bring a friend- the doctor will follow up with you after the procedure and I guarantee you will not remember anything he/she says to you!
4. CT Scans:
x-ray technique where you drink chalky barium substance again, lay down on a cold, hard surface and pass through a tube-like entrance, holding your breath whenever the technicians tell you to.
What are they looking for? A full view of the entire abdomen and pelvis.
To read more about these tests and why they are performed, check this Medicinenet article out.

Saturday, March 14, 2009

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:)