INFORMATION: Little Vitamins for your Brain

As I have stated in previous posts, the most useful source of information about my Crohn's disease, besides my doctors, has been the Internet. Yes, the Internet, in all its spam-filled, keyboard-warrior, opinionated, misguided glory. While the 'Net is rife with misinformation about any-and-every topic known to man (and even some topics that aren't known to man), there are still some dark, quiet corners of the web that harbor endless seas of useful, truthful, and supportive information. And as you will learn, some of these little hidden gems are making a huge impact on the awareness and forward-process of treating and curing Crohn's and Ulcerative Colitis. I'd like to share some of my personal favorites.

THE BASICS: These sites are generally thought of as the leaders in information about CD/UC:

• CCFA.org - The Crohn's and Colitis Foundation of America (based in USA)
• CrohnsAndColitis.org.uk - Crohn's and Colitis UK (based in United Kingdom)
• CrohnsAndColitis.com.au - Crohn's and Colitis AU (based in Australia)
• IFFGD.org - International Foundation for Functional Gastrointestinal Disorders (worldwide) 
• Mayo Clinic Crohn's Disease (based in USA, useful worldwide)

LIVING WITH CD/UC: Useful, applicable, real-life tips, tricks, and stories:

• Crohn's & Me - excellent starting point for newly-diagnosed; you can also sign up for the free Crohn's Advocate e-magazine.
• CrohnsAndColitisInfo.com - another great starting point for newly-diagnosed or caregivers
• About.com - tons and tons of information! Links, videos, articles, studies... you name it! 

COMMUNITIES: Find other Crohn's and Colitis patients, share experiences, tips, and stories:

• Facebook Group: Crohn's and Ulcerative Colitis Support Group - You must be approved by the group's owner to join this group; it's a private group, so anything posted here will NOT show up on random friends' Facebook news feeds. I am part of the admin team, and I am very proud to say this is my daily go-to source for information and support. You will likely make new friends and learn about aspects of Crohn's and Colitis you've never heard of. (With all community groups, abide by the house rules at all times to avoid potential conflict!)
• Reddit Crohn's Disease - beware, Reddit is not for everyone. As with any website that is run by its members, you may find some posts or items disturbing. However, there are far more useful and helpful (and sometimes even funny!) posts here.
• Crohn's Zone - community forum. Similar to any forum-based support group, you sign up to participate in discussions with other members. I happen to really like this one because they offer useful articles as well as member posts, and even have a Schwag Store.

PARTICIPATION: Take part in clinical studies, fundraiser events, and research opportunities:

• ClinicalTrials.gov - registry and results datatabase of publicly and privately supported clinical studies of human participants conducted around the world. Search for your condition or location from the main page.
• World Health Organization (WHO) Clinical Trials Registry - similar to the one above; worldwide.
• Chronology - A really unique website which gathers and reports user-based data about chronic health conditions. The more information you give them about your personal condition, the more useful the research can be.
• 23andme DNA IBD Study - as of the date that I'm posting this blog, this study is still accepting new participants. The kit and ancestry info is FREE for participants: you must be diagnosed with a form of IBD, and you must consent to have your DNA information recorded and researched. Even if you don't have IBD, you can still purchase a DNA testing kit and have your ancestral results sent to you. Your DNA may also help guide future genetic studies for countless medical conditions!
• GYGIG - Get Your Guts in Gear: A non-profit fundraiser for IBD awareness and research through multi-day bicycling events around the U.S. 

SPECIALTY SITES: 

• Friends of Ostomates - for IBD'ers with accessories such as colostomy or ileostomy bags.
• IBD U - for children and teens with IBD
• Traveler's Assistance - a worldwide resource of assistance for traveling with medical conditions
• Toilet Finders! - For Australia or New York City, interactive maps to locating public restrooms. There may be other sites out there for various locations - use Google to search for a site.
• Food & Cooking - There are MANY sites out there devoted to the dietary restrictions of Crohn's and Colitis. Some of my favorites are The Colitis Cookbook, Coping Well with Home Enteral Nutrition, and the Specific Carbohydrate Diet (SCD).  
• Caregiver's Network - Sometimes, those who help us need a little help too.

MOBILE APPS: there are lots out there, these are just the ones I am using:

• PoopLog (Android) - Track your bowel movements using the Bristol Stool Scale. Includes options to attach photos and notes to give to your health practitioner.
• GI Monitor (all platforms) - Log and analyze symptoms, medications, meals, and pain levels.
• AnyTimer Pill Reminder (Android) - set completely customized reminders for your phone to remind you to take meds at any time of the day/week/month, for however long you need to. As a bonus, you earn AchieveMints for using it. 
• GI Buddy by CCFA (Android & iTunes) - similar to GI Monitor, with various logging and interactive uses.

My list of links above is nowhere near exhaustive or complete. These are just some of my favorites that I wanted to share with you. A great source for even more links with a wide range of topics can be found here: HELPFUL LINKS. There are links on that page to direct you to assistance programs, insurance information, medical journals, and much, much more. 

The Internet has become the world's most loved and hated engine for sharing information. Unfortunately, just as in real-life, there are wrong turns you can take online that can lead you to spam, misinformation, or false data. Use the 'Net at your own risk, and be cautious of any information you gather. Always, ALWAYS ask your doctor or other health professional if you are ever unsure!

I hope these links will help you as they have helped me. What are your favorite websites or apps for your Crohn's and Colitis support? Please share in the comments!

Comic Relief

I think it's pretty safe to say that anyone who battles with a chronic illness will agree that laughter is great medicine. That being said, there's not much about Crohn's or UC that is "funny" or "fun," but it certainly can provide us with some awkwardly hilarious situations.

It takes a brave person to not only share their story, but also to find the humor in it. Situations like this usually aren't funny at the time they happen - more embarrassing and humiliating. But if you can look back on an incident and laugh about it, you're doing something right!

It is here that I will share one of my own awkward, funny stories.

About a decade ago, I was shopping with my significant other at a local big-box store. I had felt fine the whole day, and we had just left a pizza parlor where we had dinner. This store had a counter with cash registers in the middle of the health and beauty section, which was where I was browsing. Suddenly, out of nowhere, I experienced a sharp pain in my stomach, right behind my belly-button. It came on so fast, I momentarily thought I was being stabbed! I crouched down in the aisle, cradling my stomach with my arms, hoping and waiting for this pain to pass.

Just as the sharp pain began to subside, I felt a strange tingling in my jaw, and my mouth began to water excessively. Something in my brain told me what was about to happen - I was going to vomit RIGHT NOW.

The restrooms were clear on the other side of the big-box store, and I knew there was no way I could make it to them without losing it along the way. I frantically searched around the aisles for a rogue trash can, to no avail. By this point, sweat was dripping down my face, and my significant other was keeping his distance - probably fearing I was turning in to a werewolf.  I rounded a corner and spied the counter with the cash register, with a very young man standing behind it. In the only voice I could muster up, I said, "I need a trash can!" The employee just stared at me for a moment, and said, "For what?" with a distrusting look on his face.

At this point, I could not wait any longer. I saw the trashcan behind the distrusting employee, and made a mad-dash OVER the counter. I hovered over that trashcan for a good 3 minutes while every last bit of my insides emptied themselves on top of purchase receipts and product packaging. When it was finally over, I slowly got to my feet and looked at the young employee. An utterly horrified look replaced his distrusting gaze, and he ran from behind the counter as fast as his skinny little legs would let him.

My significant other was standing across the counter with a concerned, but amused look on his face. He kindly said, "I'll go get someone to take care of that trash can."

When all was said and done, and I had apologized up and down to a very kind and understanding store manager, I really did feel physically better! I made sure to purchase a spare toothbrush and toothpaste before I left, and cleaned myself up in the store restroom. As embarrassed as I was during the entire debacle, I really felt sorry for that poor, young boy standing behind the cosmetics counter. I never saw him again, and I often wonder if he opted for a new career path.

It is also with a big chuckle that I can look back at this incident and see the chaotic humor. In that instance, as well as others, I learned that while much of the general public may not understand our disease, they WILL deal with it, whether they want to or not!

I hope sharing my story will help you take a look at your own embarrassing struggles with this disease, and find the humor. I hope it will help you to remember that despite these pitfalls, life does go on, and we survive the most awkward of moments.

I invite you to share your funny story! Remember, you can post anonymously in the comments if you don't wish to be known. How do you feel now that you look back on it?

Work, Sick Days, and Disability - My Story and Resources

Ten years ago, I worked a full-time job, plus a part-time job tending bar, AND attended college part-time. I had dreams of a career in healthcare marketing, and gained tons of experience with three different hospital employers, over a period of about 15 years. I held various positions and learned the ins and outs of the healthcare industry, while attending school with hopes of getting a degree under my belt to assure my own future. It was a career I really loved, and became fiercely loyal to.

Today, I am struggling to maintain just a part-time job, outside my field of expertise. My Crohn's has made daily life impossibly difficult, often with feeling so sick I can't leave the bathroom. I was missing so much work due to being sick, I really had no choice but to decrease my hours to part-time, to avoid being fired. When my employer couldn't offer me part-time hours, I had to find a regular part-time job. This meant I lost my employer-paid health insurance, all paid vacation and sick days, and my career status.

This also meant a devastatingly HUGE cut to my income. I now struggle every day with money issues on top of the already dreadful health issues. My doctor has suggested that I try to apply for disability, but I'm not ready to give up just yet. I have a lot of fight left in me!

The point of this post is not to depress you with my sob story - IT GETS BETTER!!

While working at my last full-time job, I was able to take advantage of the Family Medical Leave Act (FMLA). FMLA is a Federal statute in the U.S. which protects employees' jobs in cases of serious illness of self or direct family members. This allowed me to avoid losing my job for all of the times I was too sick to work, and protected my healthcare insurance benefits. With the help of my human resources representative as well as my doctor, we were able to devise a plan of action to ensure that I would be protected throughout my illness.

I also learned that coming clean about your illness to your employer is extremely important. You're not doing anyone a favor by trying to keep your illness a secret - your coworkers and your boss can see how uncomfortable you are; they can see you picking over your food; and they definitely see all of the sick days you take. Once I opened up to my boss and some trustworthy coworkers about my illness, I found the atmosphere at work to be much more friendly and understanding. I was no longer constantly being judged or gossiped about, because there was no more question about what was going on with me. Trust me when I say you can tell your employer about your disease AND still keep your dignity. If you don't want to do it, send them a link to my blog! *wink*

Once I decided to find a regular part-time job instead of struggling to work 40-plus hours per week, I was extremely lucky to find an employer who was looking for an office assistant. This job was located just blocks from my home, and only required me to work 4 hours per day, rather than 8 (or more). However, the field of work was something I had never worked with before - the insurance industry - so I had to start over from scratch in learning new skills. Honestly, I am so glad I did - I now have more than just one type of job skill, and this is the type of career that I can see myself staying in for a long time. It's interesting and challenging, which are important qualities to me.

Unfortunately, shortly after I started my job, my boss, Tom, decided to retire. He had been in the industry for 30 successful years, and was ready to throw in the towel. When the company assigned a new agent to Tom's position, he made sure that the new agent would keep me as the assistant. This gesture was so kind and I am forever grateful that Tom valued me enough to push for my success.

My job is now more interesting and rewarding than ever, and my new boss, Melissa, is wonderful! She's extremely smart and knowledgeable about insurance, and helps me learn even more new skills all the time. She is also very understanding of my health issues, and works with me on a daily basis to make sure I'm doing okay. She has become a friend to me, as well as an employer, and I am happy to help her succeed in her career. This may sound like I'm brown-nosing or ass-kissing, but I assure you, it's not. (I don't even think she knows about my blog.) I'm saying all of this to help others know that it IS possible to find cooperative, understanding employers! If your employer is not helping you or seems un-supportive of your life and health, please consider finding a new employer!

As I mentioned before, I do struggle financially because of my decision to work part-time. But I don't feel you can put a price tag on your health. In my current job, I do not qualify for any type of paid vacation or sick days, and certainly no employer-paid health benefits. So, I did my "homework," and was able to find lots of other help out there.

The biggest source of assistance I found was the Department of Health and Family Services for my state. While benefits and requirements vary from state to state, I was relieved to find that I qualify for state health benefits (a.k.a. Medicaid) and even nutritional assistance (Food Stamps). These benefits have relieved me of the stress of paying for the exorbitant costs of my healthcare and putting food on my plate.

I have also been extremely fortunate to have a loving, caring family, who helps me stay afloat - I'll never have to worry about being homeless, thanks to my family and my boyfriend of 3 years. I'm never alone in my struggles, and as I've said over and over, the support of others who have Crohn's or Ulcerative Colitis has been the most valuable!

A quick recap and some resources for you:

• If you feel you are unable to work or have been fired from your job due to constantly being sick, start monitoring your symptoms. Take your medications regularly, and always tell your doctor what is going on. 
• Come clean with your employer about your condition, so they have a better understanding of why you're struggling. 
• Find work and an employer that suits you and provides you with rewarding productivity and peace of mind.
• Research the different types of benefits that may be available to you through your employer, government, or even local charities. Google is your friend!
• Talk to your employer and doctor about FMLA (if you live in the U.S.) and get a plan in place for your times of illness.
• Find a career and work schedule that works best for you. Keep the money aspect on the back burner - you can't buy your health!
• Know your rights: in the U.S., read up on the Family Medical Leave Act and the American's with Disabilities Act. In the United Kingdom, learn about your Disability Rights. In Australia, the NDA has gobs of information. Again, Google is your friend! 
• If you are simply unable to work, apply for Social Security Disability (in the U.S.), the Personal Independence Payment system, PIP (in the U.K.), or your local disability bureau. Please remember that these benefits can be very difficult to obtain, so it's highly recommended that you have an attorney or qualified advocate to represent your case. These can be found at low to no cost.
• Take advantage of any health or nutritional assistance that might be available to you. In the U.S. you can find your state's Medicaid outline here.

Please share any other tips you have for Crohn's / UC sufferers who are struggling to work! 

Baby Got Crohn's - A Parody

This post is purely just for fun, and to hopefully give everyone a good laugh!

I am extremely lucky to have some of the most amazing, supportive friends and family on the planet. To my utter surprise, one of my friends wrote a silly song about Crohn's Disease, and sent the lyrics to me. I truly believe laughter is life's greatest medicine, and my friend has just supplied me with a prescription for hilarity! Such a silly, simple thing, yet one of the greatest gifts I've ever received!

Fair warning: Crohn's Disease is an uncomfortable, embarrassing disease, and these lyrics definitely reiterate that. Don't be offended - see the humor!

"Baby Got Crohn's" 

(in the style of 'Baby Got Back' by Sir Mix-A-Lot)

By Makya Vandiver-Hawkins

Oh, my god, Jessi, Look at her guts.
She looks like one of those Humira injectors.
But, you know, who understands Crohn's anyway?
I mean, her guts... are just so sick.
They only talk to her because she doesn't LOOK sick, 'kay?
I can't believe she cramps and runs a fever,
She's just so.....skinny!
I mean, ouch!

I hate my guts and I cannot lie
You other brothers can't deny.
That when a girl walks in with a itty-bitty waist and gettin' night sweats on your face
You get scared, wanna be prepared
Cause you notice that stomach cramped
Unbutton the jeans she's wearin'
She's gonna go shit, no starin'
Oh, baby I wanna get you
To the doctor.

My homeboys tried to warn me
But those guts you got make you so sickly.
Ooh, Humira medicine
You say you wanna get to the toilet?
Well, use it, use it
Cause you got IBD
I've seen you hurtin'
To hell with squirtin'
She's sick, yet
Got it goin' on like Dr. B

I'm tired of pamphlets
Sayin' Crohn's are the thing
Take the average Crohn's M.D. and ask him that
She gotta be in much pain
So, fellas, (yeah!) fellas, (yeah!)
Has your girlfriend got the Crohn's? (hell yeah!)
Tell ‘em to sit it (sit it) sit it (sit it)
Sit on that butt
Baby got Crohn's

It likes 'em tired and bleedin'
With an over-productive TNI
I just can't help myself, I'm actin like a doctor
Here's my stethoscope
I wanna get you home
And rub (double up) your feet
I ain't talkin' bout colitis
Cause that's a different IBD
I want 'em in remission
So find a table
Not by the bathroom

Yeah, baby... When it comes to females,
Crohn's ain't got nothin' to do with my selection.
36-24-36 times a day?
ok with me

So your girlfriend rolls a sleeping bag

And goes camping

But nature ain't got endless t.p. in trees

My doctor says no heating pad

Cause you got Crohn's, hun!

You can eat crackers and drink water

But you won't lose that Crohn's.

Some brothers wanna play that "hard" role

And tell you that crohns ain't gold

So they sit and flush it

And I say don't retrieve it!

So crohns makes you skinny

Because of diarrhea

Cause your waist is small and your fever risin'

And I'm thinkin' bout stickin'

A thermometer in your mouth

You got Crohn's, Miss Thing!

Give you a toilet, you can't resist it

Red beans and rice will make you go

Every 5 minutes or so

Crohn's girls are on my list
Go to a game but chose to hit 'em

Public restroom, first half

So, ladies if you're Crohn's bound
And you want 3-ply to flush down

Dial 1-900-CROHNIES

And sleep for days!

Baby got Crohn's!

Sing along with Sir Mix-A-Lot's original song, here: http://youtu.be/_JphDdGV2TU

'Roid Rage

Nearly every Crohn's or Ulcerative Colitis patient has, at some point, been prescribed steroid medication. And nearly every Crohn's or UC patient will tell you, it's the necessary evil.

This class of medications, known as anti-inflammatories, cortico-steroids, or just steroids, is commonly prescribed to help calm down inflamed intestines. Crohn's and UC's most common symptom is inflammation of the lining of the intestines, and it can cause severe pain, cramping, bleeding, and can also indicate infection. The steroid medications work very quickly to reduce this inflammation, thus reducing the pain, bleeding, and discomfort. The most common steroid medications used for Crohn's and Colitis are Prednisone, Methylprednisolone, and Prednisolone. They all come in various brand names and strengths, but typically produce the same results.

When I was first diagnosed with Crohn's in 2002, I was prescribed 80mg per day of Prednisone. 80mg is a LOT of steroid power. Within one day, I was feeling better, was able to eat regular foods, and had regained some of the long-lost confidence I had in myself.

After about a week of being on 80mg of Prednisone, I started to notice I was putting on weight, which, at the time was a good thing. I had lost over 20 pounds too suddenly before the diagnosis, and needed to gain some of it back. I also noticed my face getting fuller, which at first, I thought was because of the weight gain.

I was wrong.

Prednisone and other steroids come with a myriad of side-effects. "Chipmunk cheeks" is a very common side-effect, and over time, seriously makes you appear to have a mouth full of food. How or why this happens, I do not know (and I'm too lazy to Google it at the moment). But it happens to so many users of Prednisone, that it's almost become an inside joke - thus the silly picture above.

In addition to puffy cheeks, steroids come with a seemingly endless list of other side effects. The longer you take the steroids, the more side effects you'll likely experience. In fact, long-term use of steroid medication is highly discouraged by most doctors, because after awhile, the risks of the drug outweigh the benefits.

Since I seem to love making lists (see my previous posts), here is a list of the most common side effects of steroid medications:

• Aggression / irritability / anxiety
• Water retention
• Fast, slow, or irregular heartbeat/pulse
• Headaches
• Pounding in the ears
• Swollen fingers, hands, legs, and feet
• Breathing difficulty
• Blurry vision
• Dry mouth
• Heartburn / indigestion
• Increased hunger/appetite and thirst
• Insomnia
• Increased blood pressure
• Nervousness
• Inability to concentrate
• Loss of sexual ability
• Delayed healing of wounds
• Swollen cheeks or neck
• Worsening acne
• Thinning hair
• Dry scalp
• Irregular menstrual cycle (in females)
• Food intolerance (dairy, gluten, etc.)
• Yeast infections and/or thrush
• Uncontrollable shaking or tremors

Long-term steroid use can cause:

• Osteoporosis or loss in bone density
• Depression
• Chronic bronchial problems, shortness of breath
• Spinal pain and vertebral compression fractures
• Thinning of skin
• Hyperhydrosis (sweating too much)
• Muscle wasting (decreased muscle mass)
• Hyperglycemia and glucose intolerance (with symptoms similar to diabetes)
• Hallucinations
• Violent behavior
• Hypothyroidism
• Congestive heart failure
• Stomach ulcers 
• Pancreatitis

(Please note: THESE LISTS ARE NOT ALL-INCLUSIVE. Report your possible side-effects to your doctor, or directly to the FDA in the United States, or to your local drug regulation body.) 

Because the side-effects can be serious and life-threatening (and annoying), most doctors will eventually prescribe a different type of long-term medication to help control Crohn's Disease or Colitis. There are several different classes of medications for Crohns and Colitis, some of which I will cover in future posts.

As if this nightmare of steroid side-effects isn't horrifying enough, suddenly stopping your intake of steroid medications can also have serious effects. It's almost always prescribed that patients slowly "wean" off of steroids, to avoid having the same, or worse side effects listed above. This weaning process can last for weeks or months, depending on your dose and condition.

As I said before, steroids do work very well for most Crohnies and UC sufferers. They work quickly and effectively, and it's often a huge relief just to feel better. But I highly recommend getting off of them before you develop a seething love/hate relationship with them, like I have!

What was your steroid use like? Feel free to share in the comments! By the way, comments can now be left anonymously! Just choose "Anonymous" from the drop-down box next to 'Comment As.' As always, remember to share this blog with anyone you think might be interested!