New Doc!

First, I need to share with you a conversation I had with my 16 month old a few days ago. 

Yes, it was a conversation.

Me: Conor, please get off my lap- I need to poop. Gotta run to the bathroom.

Conor: Poop?

Me: Yes.

Conor: Bye!

And so begins the childs' understanding of living with a parent who has Crohn's. :)

___________________________________________________

Today was an excellent day. I feel incredibly optimistic. This morning I met with my new GI doc! (Sniff sniff...I will miss you Dr. R, but hope you are doing well across the country!) My husband came with me- he is an excellent sidekick to have in these situations- if we were superheroes we could be called... LooGirl and #2...HAHAHAHA. Anyways...

My new doctor is in Providence, RI- affiliated with a teaching hospital, professor at Brown, truly a standup guy and we bonded because he too has fraternal twin boys! I have been having some serious low moments when it comes to my disease. When you have tried over  a dozen different medications, have never been in remission (except when pregnant), and the last time you tried a new med you ended up with lupus, well, you start to get sad and think you will never not be going to the bathroom a gazillion times a day!

The appointment was positive, I learned a lot, I appreciated his style of patient care, and I feel like I have some options to work with. In addition, he was incredibly positive about my alternative forms of treatment, including acupuncture and my ever changing diet experiments.

Speaking of diet- have I shared this with you before?!

I owe this find to Pinterest: http://glutenfreefix.com/

Have tried about 5 recipes from this site so far...with 4/5 being delicious and  truthfully, one being so gross my husband spit out the dessert in his hand and gave it back to me. What? That's what happened!

I have said this before, living with Crohn's, is like living with an eating disorder. I want to eat. I want to eat everything. When I eat perfectly (for me), which is dairy free and lactose free, food stays in me longer, but then it starts to make me feel uncomfortable. I get so used to having an empty feeling in my gut that I start to panic when I feel full!

Here's to hoping I can get past that feeling and move forward with new attempts at disease control. Please note, when I say disease control, of course I mean my disease, but then in one hot second my brain jumps to bio-control, invasive insects and plant disease. Really brain? From one odd thought to another.

Have a lovely weekend! Eat Well.

Team Semi Colon!

The fundraising has begun......

WOOHOO! Join Team Semi Colon as we raise money and awareness to find a cure for Crohn's and Colitis! It has been three years since we participated, having the twins took over our lives, haha, but on October 13th, the walk will be in my hometown of Springfield, MA!

 In 2009 this was our stellar team:

It certainly has grown since 2009- would you like to join our team?! We'd love to have you!

Perhaps you would like to make a donation?

GO HERE!

Little Men

The cuties are starting to look like little men! Yes, those are shorts. The boys have very tiny legs, like their mamma. We are starting to really enjoy summer now, and the boys are loving their outings- hopefully a trip to the beach (all of 10 minutes away) is in their near future! Bring on the Immodium!

You don't look sick

"You don't look sick."

Those words make me so angry. They shouldn't...when people say them, I'm sure they mean well. Instead of making me feel joyful that "Yay, I don't look sick!" I want to strangle them and make them live with my Crohn's for one day. Even when I had surgery, years ago, I remember someone saying that and I answered "Well, L'Oreal sunless tanner truly helps." I had no tact, haha.

It is very difficult to express what it is like to live with this disease. My mom sent me "The Spoon Theory" written by Christine Miserandino, and it is a beautiful example. Christine lives with Lupus and she has figured out a way to describe her life, very eloquently and effectively. Please read it!

I want to give one example...and it's not even a thorough example cause it only embraces a few hours of my life.

Last Saturday night, after visiting with my family in Massachusetts, I packed up the two babies and two dogs to drive back home- a 2 hour trip. In my Toyota Corolla at 8pm, baby bedtime, all small creatures had starry eyes and I was hopeful. About 35 minutes in the trip I felt that I needed to go to the bathroom. No surprise, but there was slight panic in my belly. It's ok, maybe it will pass, I thought. The next 20 minutes were up and down but then, instead of the feeling passing, the white-knuckled, I need to get to a bathroom NOW feeling was getting more intense.

I had made good food choices all day- I knew I would be driving this distance. I only drank water, I didnt have anything with lactose, no processed foods, no gluten...why is this happening to me? A sarcastic voice in my head tells me that my angels are gambling tonight- they are taking bets on whether or not I will make it to a bathroom in time. They must be bored.

It is dark out, I am driving along the highway, somewhere in CT, babies and dogs are sleeping. There is no one to wait in the car while I take a random exit and run into a gas station or a Dunkin Donuts. I do not have family or friends along this trip whose houses I can pop over to. I look around the car...I see a fleece blanket- I could sit on that. I have burp cloths in the diaper bag, I could sit on those. I could pull over, but it's dark out, I would be too scared, there are no lights on this highway. What if another car stops? What would I do? I am unarmed...and my dogs are pushovers.

I have been driving like this for 40 minutes now (amazingly I did not have an accident) and I am crying silently. One baby is sleeping, one is wailing, I cannot sing to him, I cannot soothe him, I cannot even tell him it will be ok, because I do not know that it will- I am willing myself not to let go. My jaw is clenched so hard no sound can come out. Maybe I could find a police officer and explain my problem and he could stay with the babies for a moment? What if I run into that Dunkin Donuts and ask for a fellow Mom to help me...that is dangerous, you never know who anyone is...He stops wailing and has fallen back asleep. But his tears are my tears.

I know I am approaching a mall and shopping plazas. It is 9:27pm now. I quickly roll through all the businesses in my head- Babies R Us, Michaels, Best Buy, the mall food court, Target...could I even get the stroller out and load the babies and make it into their bathroom? I will need to wake the babies up. Damn, I hate waking the babies up! They will be so mad. I think of how well set up Babies R Us is for moms and babies, conveniently they are on my phone, so I call, but they close at 9:30pm. Target? I know where the bathrooms are in this Target! What time do they close, without thinking I pull into their lot, drive by the doors- 10:00pm! They do not close until 10:00 pm!!!

Of course, the first available space is 50 yds away- why is it so busy here on a Sat night?! Practicing my deep yoga and meditation breathing, I take the double stroller from my trunk, I wake and load two screaming babies. Everyone is crying, we must look ridiculous. I briskly walk into the store and...I made it.

Upon exiting, babies still screaming, I am thinking about whether or not I need to go again. No, I just want to get home. I am rocking babies in my arms in the parking lot, trying to load them into their car seats without the dogs escaping. A man walks by me, he looks to be about my age, and says "It will get easier." I still cannot speak, and I simply nod. Apparently, my angels felt terrible and had to send me a hopeful message.

This is not the first time something like this has happened. It is not the last. In fact, a version of this scenario happens almost every day. I am not embarrassed to talk about it, this is my reality.

So yes, thank you, I don't look sick, in fact, I look very good! If you didn't know that my internal organs were waging war with each other you would think I had not a care in the world... outside my husband, my twins, my dogs, my career, my house, my car, my...shhhhhhh, if I start worrying about all of that I will need to go to the bathroom.

I LOVE watching them EAT

A cha cha cha. The twins are in bed...I can hear Conor hooting, but I believe Liam is asleep...this week the boys turn ONE! I can't believe it. One year ago today I was uncomfortably sitting in that leather laz-y-boy, on bed rest, just trying to keep those boys in as long as possible...and on Monday they will hit 12 months. Incredible. They are so chatty these days, very mobile, eating so many different kinds of foods!

Liam

Conor

I love watching them eat. That must sound strange. But if you have an eating disorder, which is sometimes how I feel with Crohn's, or an autoimmune disorder, you will most likely understand that statement. 

I love that they have an appetite, get excited to eat and that they are being introduced to all kinds of foods...lentils, quinoa, tofu, pork, avocados, tilapia, my mom's homemade red sauce, just a few examples of their favorites! I so badly want them to have tough tummies. I want them to be raised on fresh foods, avoiding the processed foods as much as possible. With my lifestyle they will see this in action, that makes me happy. And then I laugh out loud when I change a diaper and find lentils under their onesie:) 

Crohn's Disease is genetic in my family. Not only is it genetic, but thus far traditional methods of care have not proven very helpful or even possible for us. In these moments, I encourage the boys to try all sorts of food. Oh food. I wish I didn't need food. It just stresses me out to eat. During the day, I am usually very good. I stick to my gluten-free, grain-free, dairy-free diet and it truly helps. It's when I am desperate, usually at night, for something to eat and possess no energy to cook something that all hell breaks loose. I need to be one of those people that cooks mass quantity at one time, and has leftovers for the week. The person that makes their own energy bars, slices veggies and keeps them on standby in the fridge. I will get there. I was that person not long ago. Now...it's different. 

Since my system is a bit inflamed, and I have limited options in the medicinal world (if you are new to the blog, please note- I have tried every drug out there), I have been trying a naturopathic approach to handle my disease. The naturopath I have been working with is a lovely woman. What does our approach look like? It takes into consideration my diet, and then we have added a few things...B12, of course a probiotic, digestive enzymes each time I eat, and...this week I started glutamine. It is believed that glutamine (an amino acid) may have cleansing properties or even anti-inflammatory effects on the gut. Ok, let's try it!

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.

A Crohn's Care Package?

I have spent a lot of time in the lavatory lately. Did I just say lavatory? I am trying out new words for bathroom (which just gets old.) I find I cannot refer to the bathroom as the powder room, comfort station, or john without breaking into hysterics. When I try to call it a privy or loo, I feel I must put on a little cap and do a jig. I don't know why. Not a fan of lavatory....what do you call it? Inspire me!

Actually, in our home, you may see me run by you while screaming "I gotta 20 in a 22!" I am married to a police officer...in his department that means you are driving back to the station to use the lavatory:) Humor goes a long way in my house and my husband thinks this is fantastic.

Back to spending my time in the "special" place...I have been considering this.

Upon diagnosis with Crohn's I believe you should be handed a care package. In this care package you would find the following items...

• an eReader 
• a box of anti-diarrhea tablets 
• the softest toilet paper money can buy...as well as wet wipes 
• massive amounts of beverages loaded with electrolytes 
• and a tiny fairy that sits on your shoulder that says "Dear, there is always someone worse off than you. Suck it up and try not to eat food that makes you s*%& your brains out."

If you have this disease or are a very empathetic person, you know why the above are in this care package:) If you know someone who has recently been diagnosed or is in the middle of a flare up, I guarantee those items would make them happy. 

If you find that fairy, please send her my way too!

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. 

Two babies for the Crohn's Baby!

Baby Boy A

Baby Boy B

Hi everyone,
I know...it has been over a year. In that year a lot has happened! You have guessed the obvious! Twins are expected this spring!

Sooooo it turned out Humira gave me drug induced Lupus....BUT it did help stabilize my Crohn's. Granted, not being about to move around and being in immense pain for a few months is not my cup of tea, but I am grateful. Please note, this is not a typical reaction, in fact it was quite surprising for the doctors that care for me.

I took myself off Humira last January, and a few months later, the chemicals were out of my body, leaving me to explore other options. I found two wonderful options- 1. a vegetarian lifestyle and 2. acupuncture. I attribute my continuing health to this new lifestyle!

We found out this past summer that I could not conceive naturally (it seems my body attacks more than just my digestive system....) BUT lovely NPs and techs at the Reproductive Science Center helped my husband and I through other avenues. The outcome...twins! I went into the pregnancy with my Crohn's in a good place, and so far it has continued.

I look forward to sharing my baby-bearing Crohns experience and please let me know if you have any questions. AND if anyone else has Crohns and twins, I would love to learn more about your experience:)

October Greetings

To be 100% Italian...to 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!

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: http://www.humira.com/ 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.

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!

CHART EXPLAINED:
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!

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.

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:)

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.

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!

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 itch...red, 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!

To create your own Wordle- check out http://www.wordle.net/
Hope you have a great day!