Please, just cut it out!

I posted the following on Facebook last night. I figured it was pretty good and maybe I should start blogging again with this next phase of my ulcerative colitis journey... 

🏥 ULCERATIVE COLITIS UPDATE:

(Read at your own risk. I self-censored and didn’t tell you all the horrible details here, but I do allude to some things that squeamish people may not want to know about.)

My ulcerative colitis (UC) had been teasing me for months 📆. Two weeks ago today I spent the day in bed as my UC took a fast downward coaster ride 🎢 into an abyss of hell… that being defined as hourly bathroom runs, zero energy, and abdominal distress.

On October 1st, I messaged my GI doctor at the University of Chicago (UofC) for help. He responded immediately and had me stop Xeljanz, start 40 mg of prednisone (the devil’s tic tacs 💊), and go for some lab work 💉. The addition of prednisone has allowed me to sometimes make it more than an hour without a sprint to the toilet 🚽. (And in the spirit of keeping it real, let me just say that my hourly output is indicative of the inflammation 🔴 in my rectum and colon, and rarely has any characteristics that one might expect 💩. ) A UC flare makes you exhausted as it is, but know what else zaps your energy? Loss of blood.

The past two weeks I’ve been using intermittent FMLA leave for work 🗂. I’ve been working from home a few hours most days and have even visited the office for a few hours on several days to deal with in-office work. I’m not sure if I can fake it 🎭 this week to make public appearances at work. We shall see. 

My colon and exhausted body 🥴 don’t like to leave the house. I should also note that I’ve been wearing diapers continuously for peace of mind. Did you know that when your rectum and colon are inflamed 🔥, your sad sick body can’t tell the difference between gas, solid, liquid, or nothing? And urgencies are unreal. The diaper has proven to be a good decision on most days. 

On October 10th I decided against a clinical trial that I was offered and let my doctor 👨‍⚕️ know that I’m not interested in any other drugs 💊. I laid out all my quality of life issues to my doctor and let him know that it’s time for j-pouch surgery 🔪 (Ileal Pouch Anal Anastomosis). 

In five years I’ve been on five drugs (Remicade, Entyvio, Humira, Neihulizumab (trial), Xeljanz, with various “helper meds” like sulfasalazine, azathioprine, allopurinol, etc.) and at present, even the 40 mg of prednisone isn’t doing a whole hell of a lot for me. 

It’s taken my family and close friends to help me realize that I haven’t been me in the last five years 😔. I haven’t had the energy or give-a-damn that I used to. I never really was in much of a real remission in all that time, and if I ever was it wasn’t for very long. When people outside my body are realizing my misery  🤔 more than I am, it’s a wake-up call. I don’t think a gamble on another med is worth my time. I just want to be done with my colon. I miss my life. I miss having the energy to be able to make plans with friends and family and take my niece who is almost five years old on adventures (I’ve not been me at all in her lifetime.).

On October 11th I received a call from UofC to schedule an appointment. This Thursday, the 17th I have an initial meeting with a colorectal surgeon! 👨‍⚕️ I’m still in misery, but when I think about losing my colon, I have a sense of eventual hope. I can see a day where I get my life back… 

Here’s a link to more info and a short video that describes the surgery: 

https://www.crohnscolitisfoundation.org/what-is-ulcerative-colitis/surgery/j-pouch-surgery

[If you are a fellow IBD fighter, have had j-pouch surgery, have experiences with the UofC colorectal surgery department, feel free to drop me a comment and let me know!]

Ulcerative Colitis Update - July 2017

Many of you may know that after much suffering in 2014, I was diagnosed with Ulcerative Colitis (UC). Like Crohn’s disease, UC is an Inflammatory Bowel Disease (IBD) (not to be confused with IBS, which does NOT cause inflammation, ulcers, or damage to the bowel). UC is incurable and there is no “one-size-fits-all” treatment plan that works for everyone. UC is an autoimmune disease in which the immune system mistakenly attacks the lining of the colon (large intestine), causing inflammation and ulceration.

In the fall of 2014, I was hospitalized, diagnosed with UC, and started on a drug called Remicade, an IV medicine. I missed two months of work that fall. By the spring of 2015, the Remicade no longer worked. I started on another IV medicine, Entyvio. It never worked. Once again, in the fall of 2015, I wound up bed-ridden, missed two months of work, and started on Humira, an at-home injection.

Now, fast-forward to the spring of 2017 at which time I began experiencing UC symptoms once again. My “maintenance” meds include sulfasalazine and azathioprine, in addition to Humira. Symptoms have progressed the last few months. Specialized blood tests show that the azathioprine isn’t showing up in my system in adequate amounts, I’m waiting on bloodwork that will measure the Humira (adalimumab) level in my blood (though we’ve already increased the frequency), and the doctor has put me on a course of prednisone, a drug with many side effects (night sweats and insomnia) which are easily outweighed by the benefits it provides during a UC flare… namely the quelling of bathroom urges so you can leave your home and allegedly it helps lessen inflammation.

Periods of being symptom-free are referred to as remission. Since I’ve blown through three big-time meds and never truly been in remission, Dr. Stephen Paul has referred me to a specialist at the University of Chicago. Tomorrow, I will meet Dr. Atsushi Sakuraba of the U of Chicago Gastroenterology Department to determine what course of action we try next? Another drug? Or is it time to consider surgical removal of my colon?

I feel better already, just having a plan in place provides some peace of mind! I guess the unknown of where we go from here was providing more mental anguish than a realized.

Here’s a blog post from someone who reminds me a bit of myself - an IBD-inflicted runner. 

http://www.aliontherunblog.com/2016/12/12/friends-crohns-disease-ulcerative-colitis-want-know/

Pieces of My Insides

NO CURE. This is my life now. I look in the bowl and see pieces of my insides. But ask me how I am and I say I'm fine. When I have a flare, like now, my immune system is literally tearing up the inside of my colon. That’s what ulcerative colitis is.

The day I got scoped at the hospital back in September when I was finally diagnosed, one of my docs said to imagine sliding into home plate wearing shorts. Do you know how your leg would look like ground meat? He said that's what the inside of my colon looked like that day. And there's no freaking cure.

So last fall the switch was flipped and this is my life. For life. 'Cause there's no dang cure. It's a life sentence. I take about 8 (on this particular day) prescription meds plus vitamins, probiotics, Tums, etc. It could easily be more. Every 8 weeks I get a 3-hour IV of a magic med.

[Excuse me, bathroom break.]

And we just keep tinkering with meds to try to find the right combination that's going to keep my body from eating my body. I'm a chemistry experiment. There are people like me out there who eventually lose their colon in an effort to save their life. And there's no cure. No answers. People do die from this. So I guess I am lucky. At least for now.

And who knew that a colon-related disease could ‘cause severe fatigue to the point that I.just.can’t. So you stay in bed all day. And joint pains so bad that you feel like if you straighten your arms your elbows are going to crack. Both arms. Because these weird pains are often symmetrical. Fortunately, I haven’t had the joint pains in awhile. Autoimmune diseases are weird and come with all sorts of possible symptoms like this. Fortunately, my usual non-colon symptoms are just severe fatigue and migraines.

I try to be upbeat about it and try to educate the masses on these diseases. I think I’ve done pretty good so far. I really think tonight was my first real lonely pity party since my diagnosis about 8 months ago. C’mon, I can’t pretend to be happy all the time. And this was a pretty crappy week at work.

Oh, I didn’t mention that what can trigger a flare isn’t known for certain. One thing that many do agree on as a trigger is stress. Stress at work. Stress on your body. Stress on your mind. And so the stress can lead to a flare, and then a flare can get you down and cause stress, and did I mention stress is thought to be a trigger for flares?

Oh, and just one more thing. Meds I take to keep my immune system from attacking my body work by weakening my immune system. I had a cold I couldn’t shake for several weeks recently. To the point that I had to go for a chest X-ray to make sure it wasn’t pneumonia. It wasn’t. So I called it “not-pneumonia” and kept hacking up my lungs. Did I mention stress on the body can potentially trigger a flare? And that flare could lead to more meds that hinder your immune system which could lead to other illness which could lead to a flare which could lead to other illness…

Oh, and I may end up with arms of a junkie, because I have to have routine blood work to make sure my meds aren’t killing me. One of my meds can cause blood cancer. And the disease itself can lead to cancer. And like cancer, there’s no cure. And like cancer, people die from it. But it’s lesser known. Because there are fewer of us.

I’m done rambling. I feel better. This time, please no comments. No messages. No “get well soon” - did I mention this is my life and there’s no cure, so there’s no getting well soon? I shared my inner thoughts tonight for educational and awareness purposes. And because writing is good therapy.

These are just the a few of the rambling thoughts in my head tonight, I'll save the rest for another time. 

I'm running the Rock n Roll Half Marathon in Vegas this fall to raise funds for a cure for IBD (Inflammatory Bowel Diseases - Crohns & Ulcerative Colitis). If you'd like to make a contribution to help fund a cure, please go to http://online.ccfa.org/goto/JoanGrott. The Crohns & Colitis Foundation of America (CCFA) is one of the top charities out there. 80% of funds raised go toward research, education, and patient support. 

Proudly Athena

I think it sounds pretty bad-ass to be able to say I’m an “Athena” runner.  Calling a running guy a “Clydesdale” however, is something I can’t do with a straight face.  If you haven’t heard these terms before, you’ll occasionaly encounter Athena and Clydesdale divisions in running events.  Athenas are females more than 150 pounds, and Clydesdales are males more than 190.  Competing in these divisions takes you out of competition with your age group and pits you against other big-boned people!

Whenever I see the option to compete as an Athena in a race I sure do!  In my opinion, it’s the only chance I have to compete for a medal, and competition is what drives me (In my running club, I’m happy that they offer Athena and Clydesdale divisions for their Gold Cup Series!).  Sure, competition with my own personal best is great, but you can’t tell me that competition against others isn’t motivating!  And you can’t tell me you wouldn’t want a little bling hanging around your neck as you leave a race!

Unfortunately, oftentimes when these divisions are offered, not too many Athenas seem to sign up.  I’m not sure if it’s because they don’t know what it is or perhaps more likely, they don’t have the self-confidence to proudly declare that they weigh more than 150 pounds (I honestly haven’t weighed that little since 5^th grade!).  Personally, I think it should be more like 175 or so, but that’s just this proud 197-pound big girl talking! (That’s right, 197! I’ve lost 20 pounds since my Shakeology journey began in December. #WeighInWednesday)

If you fit the criteria, go ahead and proudly sign up for the Athena or Clydesdale division next time you see it offered!

Now, onto what’s happening in the Beachbody world… I don’t want you to miss out on some great specials available through the end of the month… The MMA-inspired Les Mills Combat, the rapid weight-loss & accelerated strength-training of Les Mills Pump, or the detox and tune-up of the Ultimate Reset are on special through March. Contact me for details: joan@joangrottfitness.com or connect through Facebook at www.facebook.com/joangrottfitness.

And one last thing… Those who know me know that I tell it as it is, and I want you to know that I truly believe in the power of Beachbody to make a difference in lives, I mean in my first few months in the biz, I lost nearly 20 pounds and made enough money to pay for me recent all-inclusive five-night Caribbean vacation (airfare too!)  And now I want to share this opportunity with you and I’m looking for a few team members.  Requirements for team members:  must love to help others, be interested in working from home, and would like to make $500 a month or even a week! If you know of anyone, could you please send them my way?!  And I'd be happy to give YOU a gift if the prospective team member you send my way works out! (joan@joangrottfitness.com, www.facebook.com/joangrottfitness).

Lighter & Faster!

It’s been awhile since I blogged, but I’M BACK!!! February was a rough month for me, but I ended it on an upswing with a “spring break” to Riviera Maya, Mexico with my childhood best friend!*

I didn’t see much weight loss in February, but despite all that I was facing, I DIDN’T GAIN weight, so that was awesome! And following my spring break, I got back to business with my workouts and my Shakeology nutrition, and the scale is moving downward again… my first post-vacation weigh-in was last Wednesday, and I finally broke into the 100s! 198.6 pounds!

To recap, since I began including Shakeology in my daily routine back in December, I’ve lost 18 pounds so far! As I’ve shared before here, I truly believe it’s corrected the nutritional piece of my health/fitness puzzle...and it keeps my energy up, keeps me feeling full longer than my old breakfast did, and I just feel healthier!

One of my goals for 2014 is to get back to my best running shape, and so far I’m on the right track!  This past Saturday I ran my first Gold Cup Series race for my local running club, the Calumet Region Striders.  My best recent training 5K was a shade faster than 34 minutes, so I set my goal at 33 minutes and promised myself a new pair of running shoes if I beat 33.  I found myself fairly-comfortably running at a 10:00ish minute/mile pace and managed to finish in 32:00.5!! The Athena division of the Cal Striders better look out, ‘cause I’m gonna kick some tail this year!!  And I can’t wait to visit my local running store, Extra Mile, this week for some new kicks!

*I earned enough money in 3 months as a Beachbody coach to cover the cost of airfare and 5-nights at a beautiful Riviera Maya all-inclusive resort.  If you’re looking for a fun way to earn some extra fun money, pay down debt, etc., contact me to learn more about being a Beachbody coach!

Proud to be an Athena!

I ran my first 5K back in 2010, and finally in 2013 I decided to join my local running club, the Calumet Region Striders.  Last Saturday, the Striders held their annual banquet, which provided me the opportunity to reflect on my 2013 participation in the Striders “Gold Cup Series”. 

In hindsight, 2013 was rough!  I gained weight and plateaued, and I really slacked on my running.  Ever since my first 5K in 2010, my aim has been to run at least one event per month.  In 2013, I got to the point that I wasn’t really running in between my events (I was still doing other workouts, but not running regularly).  I got slower.  But I knew I could get it done.  If it weren’t for the friendly competition presented by the Striders Gold Cup Series (I had to run at least 10 races from the Gold Cup “menu”.), I may have abandoned running.

5th Place Athena* for the 2013
Gold Cup Season!

I had previously set some running related goals for 2014 anyhow, primarily getting down to a 28:30 5K, and setting a 10K PR (personal record).  Saturday night inspired me to really get more serious about those goals, and really work hard to be the best me I can be, and really compete in the Athena* Division of the Gold Cup this year!  I’d like to see myself finish no less than 2^nd place in the division for the 2014 season!  And if I stick to my plans for 2014, I know I can do it!

I’d like to extend a heartfelt thanks to all the volunteers who provide leadership to the Calumet Striders!  You truly make a difference for so many of us! THANKS!

*For those who are unfamiliar with the term “Athena” as it relates to running, it’s what I call “the big girl division” for females who weigh more than 150 pounds.  There is also the “Clydesdale” division for males who weigh more than 190.  (I struggle to say the Clydesdale one with a straight face, because I just picture my brother-in-law galloping like a draft horse.)  When you sign up for Athena or Clydesdale it takes you out of competing with your age group, and pits you against other big people.  Quite frankly, I’d love to see those weights be a touch higher.  I’m built like a brick outhouse, not a runner, I probably haven’t weighed 150 since junior high (or maybe even elementary).

Getting Faster, Next Race, & Weight-Loss!

One of my goals for the year is to get back to my running best, which means I need to complete a 5K in better than 28:30.  I also want to set a PR (personal record) in a 10K (need to beat 64:20)!!  I’ve been putting forth more effort when it comes to training, and last Friday I had an amazing 5K (3.1 mile) run on the treadmill…I beat any recent times by at least 30 seconds.  I’m an interval runner, and I completed Friday’s run in 33:26, an average pace of 10:47/mile.  (I would run 6 minutes at 5.8ish mph, and then walk for 1 minunte at 4 mph, repeating these intervals for 3.1 miles.)  Not sure I ran a 5K that “fast” in all of 2013!

My next race is The Chi-TownBig Game 5K on Super Bowl Sunday (2/2/14) at Soldier Field in Chicago.  Last year was the inaugural event, which I participated in, and it was AWESOME!  The pre- and post- race events were held in the posh United Club in the stadium!!  Taking some family with me this time… the sis, bro-in-law, and maybe even my cousin!

SHAKEOLOGY UPDATE:  I’ve now been replacing at least one meal per day with Shakeology for 7 weeks, and am down 13.5 pounds!  If you’re new here, please scroll back through some of my other recent posts to learn more about me… one key point you’ll find is that I had hit a weight-loss plateau long ago and Shakeology has helped me start losing weight again!

I read or heard somewhere that when your body is getting the nutrients it really needs, that you don’t crave the “bad” stuff (the greasy, sugary, yummy bad stuff).  I’m beginning to think this is true.  The longer I’ve been incorporating Shakeology into my routine, the less I crave those things, which further helps my overall efforts!

For more on my Shakeology experiences, check out the following two recent blog posts:

12/26/13:  -7 Pounds in 3 Weeks
1/6/14:  I'll Give it a 10

1/14/14:  That’s Just Dopey

If you’re ready to make a positive change in your health and wellness, contact me (there's a contact form on the right side of my blog, or find me on Twitter or Facebook).  We’ll build you a Beachbody Challenge Pack with Shakeology and a fitness program that suits your needs (whether it be the all-new 30-minute workouts of P90X3, Tony Horton’s 10-Minute Trainer, Insanity, T25, or one of many more great workouts)… a complete nutritional and exercise package!  And we can even get you plugged into an online Facebook support group of other like-minded people to help hold you accountable and challenge you to work hard to reach your goals!  (Learn more about the Beachbody Challenge at www.beachbodycoach.com/joangrott.)