Back on Track

Back in February, I posted that I would be adding more content to this blog soon. I am very sorry to those of you who have kept up with this blog, and I thank those of you who messaged me to check on my well-being. I really do have some great readers, followers, friends, and family!

Things lately haven't been well for me, physically: I've lost 7 pounds since last Wednesday, I'm in constant pain (and the painkillers make me feel way too loopy), depression is making me crabby, I can't eat anything besides simple carbs, and I'm just so done with this flare-up!

Here's the latest update on my particular surgery case... if you recall, the surgery was originally supposed to happen in December. Then I got SHINGLES, so it was postponed. A few other things happened in between the last few months that made the surgery get postponed again, one of them being getting a new surgeon. My GI doctor, whom I trust very much, strongly recommended a different surgeon, one who specializes in Inflammatory Bowel Disease surgeries. The previous surgeon was a general surgeon, so I was more than happy to oblige for the second opinion.

I met with the new surgeon today for a consult. She is wonderful! She answered all of the questions that my boyfriend and I asked, and explained/showed us exactly what she's going to do. There's no longer any mystery surrounding this surgery; I am fully aware of what to expect.

The plan is to remove my ileum (the portion of the bowels where the small intestine meets the large intestine), as it is actively diseased. She'll re-sect the small and large bowels back together, but I just won't have that "flap" of the ileum anymore.
She'll also be removing a portion of my Sigmoid colon (the "S" shaped portion of the large bowel, close to the rectum). This particular area has been the source of active Crohn's since I was first diagnosed. I am actually EXCITED to have that part removed!

Finally, she'll detach the fistula that has invaded my bladder, and remove any additional diseased areas. The bladder may need a stitch or two, but should heal up fine on its own after surgery (with proper care, of course).

While the current plan is to re-attach and have full-function of my bowels after the diseased portions are removed, there is a small chance that I may have to have a temporary stoma and colostomy bag. I'll make a post about these appliances soon, as it's fairly common for Crohnie's to have them. This news doesn't bother me at all, but for some people, the thought of having what is essentially a bag of poop hanging off of their body is a bit hard to consume.

The best part of the meeting with the surgeon is when she said what I have wanted to hear for so long: this surgery will most likely afford me LONG-TERM REMISSION!!
With that said, remission requires care and maintenance on my part and my GI doctor's part, but I may just have a period of life ahead of me that is pain-free, bloat-free, bloody stool-free!! It's no secret that Crohn's Disease can and will come back in most patients, sometimes in a different area of the digestive system. But with proper maintenance medication and personal care, I hope to fend off any return of CD!

We're looking at either May 6th or May 14th for dates of surgery; that will be determined by the coordination ability of the scheduler at the hospital. Since a urologist will need to assist with the bladder portion of the surgery, this will be a highly choreographed event. The whole thing should take 3 to 4 hours. Planned hospital stay of 3 to 5 days, if everything goes well. I'll be facing about two months of full recovery time after surgery, but I'm hopeful that it will go quickly.

Not a whole lot of "funny" to write about right now, given my current physical and mental status. But I promise you, my funny bone is still fully intact and will be droppin' fat jokes again soon! In the meantime, check out some of my previous blog posts to learn and laugh!

Life Happens but I'm Back!

When I created this blog, I had plans to update it often - daily, even. But, truth be told, life happens. And unfortunately, this little gem had to take a backseat for awhile. So, after nearly a month-long hiatus, I am back! Over the past few weeks, I have dealt with a lot of personal and family issues that created a lot of stress. But, everything is settling down now, and once again, I'm able to focus more of my attention to helping others through their Crohn's or Colitis journey!

What? Why would I want to do that? As crazy as it may sound to some, helping and educating other IBD'ers and their friends/family gives me a sense of accomplishment, peace, and good ol' satisfaction. I guess what I'm saying is, I'm not doing this for you - I'm being a selfish brat and it's all for me!! (Just kidding. This is 100% for YOU.)

A quick run-down of my health status: 

1. The shingles I had are long gone, finally.
2. I've been trying to taper off of Prednisone (this link will take you to my previous blog post about steroid meds), but ran into some issues with it. My body had withdrawal symptoms, and my Crohn's flared back up with a vengeance. So, I'm still on the medication, but am working toward weaning off again.
3. The Prednisone also gave me the delightful side-effect of severe muscle spasms in my back, legs, and feet. I've been miserable with these aches and pains, but it's getting better!
4. My GI doctor has recommended a second surgical opinion for my fistula surgery, for reasons that I'll expand on after I meet with the new surgeon.
5. Because my surgery has been postponed again, I am back on Cimzia - a biologic injection medication - for treating my Crohn's. The injections seems to be helping to at least keep the fistulas from growing and worsening while I await surgery.

I'll keep this post short, as it's more about my status than helping others, but I would like to say that I'm really glad to be back. And I'm looking forward to the next step of the journey. In the meantime, I have some more highly-informative posts planned for this blog, thanks to questions asked by readers and friends. 

If you're new to my blog or new to Inflammatory Bowel Disease (IBD), a great starting point would be HERE. You can also learn more about the various symptoms of Crohn's and Colitis HERE. Feel free to read through my posts to educate yourself or others about the Crohn's and Colitis struggle.

As always, please SHARE my blog with anyone you feel may benefit from it! And don't hesitate to comment, ask questions, or share your complete disgust of the disease with all of us! Stay tuned, there's lots of goodies in store! 

 

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!

OM NOM NOM (Foods post, part 2)

As I sit here enjoying my mother's frosted sugar cookies, I'm reminded of how lucky I am to be able to be sitting here... eating my mother's frosted sugar cookies. To most people, eating simple foods is just second nature. It's a part of life. Hungry? Grab whatever's available. It's not so easy for a Crohnie to just grab-and-go, unfortunately. We have to analyze, consider the risks, and bargain with ourselves over every single bite we take.

As promised, I am posting a list of foods that I, personally, can enjoy with my Crohn's, usually without any problems. (For part 1 of this topic, click HERE) But, I want to make it clear that every Crohn's/UC patient is different - what one of us can eat could send another of us to the hospital. So, this list is purely from my own perspective, and maybe it will help other Crohnies discover some things to try.

YAY FOODS!:

• Pasta - regular pasta is best for me. The whole-grain type gives me far too many problems. Anything from spaghetti to macaroni to bow-ties. YUM! I have to make sure it's fully cooked and soft (al dente is too hard to digest), and I really love it with just some butter and cheese, or even Alfredo sauce. Red meat sauces are iffy... I try to avoid any meat in them, unless it's meat I've added myself. Plus, the abundance of the tomato acids in the red sauces tends to produce severe acid reflux, so I can only have small amounts of red sauces. I recently started mixing red and white sauces, and it's delicious! 
• Filled pastas, such as ravioli, tortellini, or stuffed shells - If they're filled with mostly cheese, I'm good to go! The ones that are filled with sausage or other meats tend to cause some discomfort, but I still allow myself to enjoy it from time to time. That's the "bargaining" part of our diet... you know it might make you slightly ill, but the indulging might be worth it!
• Seafood - I really love all sorts of fish, shellfish, and even the occasional clam strips. There are a few things I have to remember with these delights: watch for bones!! These can cause harm to anyone, not just Crohnies! And if it's cooked with too much butter or grease, I'm going to be in some major discomfort. Again, I do bargain with myself on seafood, because I LOVE IT. 
• Cooked Veggies - Raw veggies typically send me to the floor in the fetal position within a few minutes after eating them. I now avoid them completely. But COOKED veggies are much easier on the digestive system, and I can enjoy quite a few of them. Some of my favorites are green beans, beets, mushrooms, artichokes, squash (such as acorn squash or spaghetti squash), zucchini, summer squash (the yellow kind that looks like zucchini), and cooked/steamed cauliflower.
• Potatoes - I didn't include this in the "veggies" above, because I think it deserves to be in it's own category. I LOVE potatoes. It doesn't matter how they're prepared. Mashed, baked, sliced, diced, chips, fries, tater tots, boiled... I'll eat them! I garnish my baked potatoes with cheese, butter, or sour cream (or all of the above, if I'm feeling adventurous). I like fries and tots dipped in ketchup, ranch dressing, or even mayonnaise. I loved oven-baked diced potatoes, as long as the spices used aren't too hot or whole. Heck, I will even peel a small potato and eat it like an apple, on occasion! They're so delicious, and they're filling, so for me, it serves as a meal in itself.
• Bread - I choose non-enriched white bread for my diet. Not considered "healthy" by most standards, but whole-grain bread and enriched breads make me very sick. The bakeries at most grocery stores sell Italian or French breads that are perfect for me. They freeze nicely too, so I can stock up. I enjoy making toast, with various items on top: butter/margarine, jam (NOT preserves!), peanut butter, and sometimes even mayonnaise. Don't judge.
• Condiments - I can enjoy small amounts of many types of accessory foods: real butter or margarine (vegetable spreads); smooth peanut butter, including almond and cashew butter - as long as there are no chunks of nuts; jams and jellies without whole pieces of fruit (no preserves or marmalade); salad dressings of all sorts; mayonnaise (I prefer the type made from olive oil rather than eggs); ketchup; A-1 steak sauce; barbecue/BBQ sauce; Alfredo sauce; marinara sauce without meat; sour cream and sour cream-based dips; wine sauces; Hollandaise sauce; maple syrup; yellow (non-spicy) mustard; cream cheese spread. I'm sure there are others that I can't think of off the top of my head at the moment, and I'll revise the post as I think of them.
• Fruits - Probably the most difficult part of my diet is trying to integrate fruits. They hate my guts! I can eat bananas, pears, and small oranges without any problems. That's about it. However, I haven't given up on trying all kinds of fruits! They are all so tasty and delicious, so sometimes I'll "test" them out to see how my body responds. Unfortunately, it's usually a very negative response, and I wind up in bed or on the toilet all day long. *sad face*
• Processed Foods - Fortunately for me, I live in America, where the processed food industry output is abundant and inexpensive. Also, highly controversial. Processed foods typically involve the use of many chemicals not meant for human consumption. BUT... my body seems to be OK with this. In fact, my guts seem to prefer a factory-made, preservative-loaded chocolate cupcake over a homemade one. I've given up on trying to understand it, and I just roll with it. I still eat these kinds of foods in moderation, but sometimes, it's all I can stomach. Especially instant oatmeal. YUM! Or Little Debbie Zebra Cakes. OMG. YUM. Oreo Cookies? TO DIE FOR. Doritos? A must-have. Kraft Macaroni & Cheese? My life support. Banquet oven-ready Pot Pies for 89 cents? I'll eat them daily! Ramen noodles = my go-to meal. It is not without guilt that I enjoy these foods, but they truly are my comfort foods - they do not cause my Crohn's to act up whatsoever... probably because my body can't figure out what to do with all those chemicals!
• Fast Foods - I strongly dislike fast-food, but let's be honest: sometimes, you just need to grab something quick and you don't have any other options. McDonalds is a place I have a love-hate relationship with. I love their breakfast foods, namely the breakfast burrito. It's cheap, simple, and easy on my stomach. It does have small amounts of sausage and peppers in it, but they're so overly cooked and processed that my body doesn't seem to notice. Their lunch and dinner offerings are a HUGE hurdle for me. Their burgers are made with overly-processed meat, so I CAN digest them, but they are so greasy, I wind up feeling terrible for hours afterward. Their whole-piece chicken products (like the grilled chicken sandwiches) are delicious, and I usually do OK with them, as long as there are no veggies on the burger. Big NO to the fried foods, except for their French fries - I can nosh a small handful of those without any problems. 
• Rather than go through each and every fast-food restaurant menu listing, I'll just say that I try to avoid fast food as much as possible. Subway's offerings have been my best bet thus far, but even their "fresh" ingredients tend to make me ill. I'm better off making a PB&J sandwich to go before I leave the house for the day, to eat when I'm hungry.
• Soups - Soups are usually pretty good to me, as long as I choose ones that don't have difficult ingredients. I stay away from soups with lots of peppers or celery, but I certainly enjoy the potatoes, carrots, and barley. Clam chowder is one of my favorites, along with cheesy potato soup, and good ol' classic chicken noodle soup. 
• Dairy - this has been an ongoing roller-coaster for me. Depending on my current medication regimen, I can either enjoy all the dairy I want, or I can't have a drop of it. When i'm on steroid medication for my Crohn's, I become so intolerant of dairy, that it literally comes right back up and out my mouth. But, when I'm not on that type of medication, I can indulge in all things dairy and it's wonderful! I do TRY to indulge in moderation, but lets face it - ice cream, cheese, milk, yogurt - it's all so delicious! I tend to go a little overboard at times, thus making myself sick. But I believe that could happen to anyone who over-indulges in any kind of food. 

I hope my list above will offer some insight into the diet of a Crohnie. Again, this list is NOT going to be the same for every Crohnie. Some patients find that dairy, gluten, or preservatives are their worst enemies. Some can only eat liquid forms of everything. And some even resort to eating ONE type of food every day for the rest of their lives, to avoid getting sick. 

I recommend Crohn's and UC sufferers warriors learn by process of elimination what foods work best for you. And then, in a year or two, try again. I have discovered that I can eat some foods now that I couldn't eat previously. I believe our bodies and our symptoms are ever-changing, and it is to our benefit to change with them. 

A great source for elimination diet tips and how-to's can be found at  http://www.precisionnutrition.com/elimination-diet.

What are some of your go-to foods? What about your big no-no foods? Comment below!

Happy, Healthy Holidays!

To my readers, I wish you a very happy, healthy holiday! Regardless what it is that you celebrate this time of year, I hope you find comfort, happiness, and some delicious treats that won't leave you camped out in the potty!

I will be posting another entry about foods very soon, as I've had many requests for more information on this topic. If there is something you'd like to read about on my blog, please send a message to me or comment with your suggestions!

Merry wintertime holidays! Peace, health, and happiness to all!

When it Rains, it Pours

Just want to post a quick update for my readers. But before I do, I want to scream THANK YOU at the top of my lungs to everyone for sharing my blog and getting it read around the world! My viewership has extended all across the globe, and it's all thanks to the great, supportive audience I have!

Please, feel free to share my blog ANYWHERE - Facebook, Twitter, Tumblr, anywhere you hang out online. I want to help as many people as I can! The blog can be translated in to any language, so let's send it around the world again!

Now on to my update...

When things keep going wrong, they say "when it rains, it pours." Things have seemingly gotten worse for me over the past several days, but it's not all related to Crohn's Disease. The outbreak of shingles seems to be slowly getting better, but I have some days where the pain extends all across my neck, shoulders, and scalp.

My doctor has prescribed oxycodone for the shingles pain, and while this stuff definitely helps mask the pain, it makes me as loopy as a rollercoaster! It feels like being drunk, but not in a good way (if there even IS a good way). So, I've resorted to only taking it at nighttime to help me sleep. That doesn't work so well either, it seems, as it has disrupted my already-faulty sleep pattern. I wake up nearly every hour of the night, feeling pain-free, yet cuckoo as a clock. Needless to say, my mornings are miserable.

In addition to my Crohn's flaring up and the shingles outbreak, I now seem to have acquired a sinus infection. I get these quite often throughout the year, mostly when the weather changes. Pretty sure I single-handedly keep the facial tissue and nasal spray industries in business.

All of that nose blowing has me looking like Rudolph the Red Nosed Reindeer, which, I must say, is perfect timing for the season! I'll be guiding no fat men in sleighs, though. The nasal spray helps with breathing, but makes my throat raw and scratchy, and suddenly I can do mean Gilbert Gottfried impression!

I can't seem to catch much of a break lately with all these various illnesses popping in and out of my life. But, I'm staying positive thanks to my wonderfully supportive friends and family, and even strangers on Internet support groups. Thank you again, readers! And, I promise to post another Crohn's related update very soon! Stay tuned!