Only time will tell

I’m gonna rewind here for a few, I hope you don’t mind. I hadn’t planned this post to happen on this day – it just kind of worked out that way and now I feel like I owe the day the “respect” it deserves for lack of a better analogy.

A year ago today, I made a phone call I had made many times before. I called my mommy. I was sick, I knew it was not a sick like I had been before and I was afraid I was going to die. Seriously…I did. I know a lot of people throw that phrase around non-chalantly “I almost died!” or “OMG, I would just die!” There was one time before in my battle with Crohn’s disease that I thought I was going to die – funny thing is that we didn’t even KNOW I had Crohn’s disease! Huh. Weird how that works out. Anyway, I really thought I was going to die, the pain was nothing I had experienced before. The fever wouldn’t go away. I was going to the bathroom more times in a day than most people did in a month. I felt like my insides were turning wrong-side-out. That was the beginning of the end for my colon.

The last 12 months have been a roller coaster. Surgery. Then a complication and another surgery and again. And one last time. You can get the full scoop HERE if you don’t already know. Even after the surgeries I had more hurdles to jump over. I knew going in that surgery wasn’t the “easy way out” but I swear I had NO idea WHAT “could go wrong”. Even if I had known that these things were going to happen, I would have done it anyway because my life is SO much better now than it was on this very day last year.

After I participated in Take Steps San Antonio in October I set my sights on Team Challenge ½ marathon as my next event. I had been cleared to exercise (finally) and went right to work. Well, you can probably guess that I had some issues. And even now, I have issues. But, if I want to do what I have set out to do I just have to push through them and know my limits. As you may have read I have an amazing relationship with my medical team and they are always in close contact so that if ANYTHING comes up that is out of the ordinary I receive immediate attention.

I started the Couch to 5K program and was about ½ way through it last weekend when I ran in the Color Me Rad 5k here in San Antonio. Okay, I ran and walked. I followed the C25K plan for the day and finished in about 47min going just over 3.3 miles (I circled back for friends!) My first event just so happened to coincide with Team Challenge Rock n’ Roll marathon & ½ marathon in Las Vegas. I promise I did NOT plan that. Those people in Vegas kept me going – everytime I thought “screw it, I’m just gonna walk” I imagined ALL.THOSE.PEOPLE in Las Vegas running for me! They were there because they believe in me – they believe that there will be a cure for Crohn’s disease and ulcerative colitis. They believe that I deserve treatment, education and activities that help with IBD. I couldn’t let them down.

As I got towards the end of the race the last 11 months literally flashed before my eyes. It was like a music video in my mind – all the images of my body, my family, the hospital, exam rooms, things I had done, people I had met, conversations I had participated in – all of it just went whizzing by. I was totally overcome by emotion – my body almost stopped on me, like it was in shock. I was seriously about to complete a 5k. 6 months ago I would have LAUGHED at someone if they said I would finish a 5k a year from the day I thought I was going to die. Hell, I still had an open wound on my abdomen then! As I started up the hill to go under the FINISH arch I put my hands on top of my head and started to cry. For the FIRST time in a LONG time I felt “normal”, whatever that is!?

I crossed the finish line by myself – well, there were lots of people going through – but none that I knew or had come with. There was no one waiting for me to celebrate my victory. I had originally thought I wanted someone to be there – but when the moment happened I couldn’t have been happier to be doing it alone. FINALLY something that was just.for.me. My life with Crohn’s disease has been about everyone else; work, friends, family – the way it sneaks in and disrupts every aspect. But this – this day, this 3.1 miles, THIS was all me and so I was okay with being alone at the finish line. It gave me a chance to reflect on who I am. Who I have become over the past year. Who I struggle to be.

I am a mother. I am a wife. I am a daughter. I am a sister. I am a friend. I am a patient. I am an advocate. I am a voice. I am a warrior (and have the scars to prove it!) I AM CROHN’S DISEASE, it is NOT me.

I dedicate that 3.1miles to every single person out there who is in a place right now that you don’t think you can get out of. I’m here to tell you that you can. All you have to do is reach out, there is an entire community of people out there ready and willing to take you by the hand and show you how. You just have to want to do it.

Please come back this week – I’ll be doing an entire post dedicated to the IBD community by linking up all the places I go to for support, information or just a good laugh!

Find your silver lining and BE AWESOME!!

Purple Out People!!! #gopurple #purplechallenge

Crohn’s & Colitis Awareness Week starts tomorrow and we are so excited to celebrate it with everyone in our IBD family!

What is Crohn’s & Colitis Awareness Week?
As a result of a federal bill introduced by Senator Harry Reid (D-NV) and Congressman Andrew Crenshaw (R-FL-4) passed in 2011, Congress declared December 1-7 to be Crohn’s and Colitis Awareness Week to educate Americans about the diseases and encourage people to join in the effort to find a cure for IBD. This resolution was passed in thanks to some great Senators and Representatives who cosponsored it including:
·      Senator Thad Cochran (R-MS)
·      Senator Jack Reed (D-RI)
·      Senator Kirsten Gillibrand (D-NY)
·      Senator Patty Murray (D-WA)
·      Senator Charles Schumer (D-NY)
·      Senator Maria Cantwell (D-WA)
·      Senator Richard Burr (R-NC)
·      Senator Dianne Feinstein (D-CA)
·      Congressman Rush Holt (D-NH-12)
·      Congressman Jesse Jackson (D-IL-1)
·      Congressman Pete King (R-NY-3)
·      Congressman Tom Latham (R-IA-4)
·      Congresswoman Carolyn Maloney (D-NY-14)
·      Congressman Jim McGovern (D-MA-3)
·      Congressman Jim Moran (D-VA-8)
·      Congressman Charlie Rangel (D-NY-15)
·      Congressman Dennis Ross (R-FL-12)
·      Congressman Pat Tiberi (R-OH-12)
·      Congressman Adam Smith (D-WA-9)

Why celebrate?
Crohn’s and Ulcerative Colitis impact millions of people nationwide. We don’t have to tell you how debilitating these two incurable diseases can be- the cramping, the diarrhea, the constant urgency, the food limitations, and so on.

Crohn’s & Colitis Awareness Week is celebrated to make people aware of these diseases and raise money to bring us close to finding a cure.

How to celebrate this year
A group of Crohn’s and Colitis bloggers are coming together to celebrate this year with a Go Purple Challenge.

From December 1-7, we are going to wear an item of purple in honor of Crohn’s & Colitis Awareness Week. Whether it’s a shirt, bracelet, pants, socks, nail polish- it doesn’t matter as long as it’s visible and purple!

Each day, we are going to take a picture and post it on our blogs, Facebook, & Twitter to share with our followers to show our support of the Crohn’s & Colitis Awareness Week.

We are challenging all of you to join us!

Wear purple and take a photo of it each day and post it to your blog, Facebook, or Twitter with the hashtag [#GOpurple  or #PurpleChallenge]. At the end of the week, we’ll compile all the photos on our blogs to share with everyone.

Want to celebrate but can’t participate in our challenge?
Check out the Crohn’s and Colitis Foundation of America’s website for ideas- they have some great one’s listed for ways to participate in the week.

Happy Crohn’s & Colitis Awareness Week!

Rebecca (www.caringforcrohns.com, @caringforcrohns)
Sarah (www.myjourneywithcrohns.com, @SarahChoueiry)
Melissa  (www.detouredfashion.blogspot.com, @allbluezoo)
Louise (www.youngcrohns.tumblr.com, @sapphire20)
Kristen (www.kla-yeayouknow.tumblr.com)

#NHBPM - what day is it?!

Guess what? I didn't blog everyday. 

Guess what else?  I think that's great!

You know why it is great?

Because it means LIFE was getting in the way and that is A-O-K with me.

I've been black Friday shopping, putting up decorations, visiting friends, celebrating new babies, enjoying time with my family and generally just not worrying about Crohn's disease one-freaking-bit. 

Can you GRASP the enormity of that? 

NOT WORRYING ABOUT CROHN'S DISEASE?!

For those of you WITH IBD you probably can grasp that, for those who are closest to me and really understand what the past 9 years (specifically the past 18months) was like - you probably grasp it too. 

I'm stuck between crying for joy and getting shit-faced on peppermint schnapps.  Okay, I'm not gonna get drunk on schnapps b/c that is WAY too much sugar and I'd be up all damn night - but you're pickin' up what I'm throwin' down.

Sorry if you were counting on my infinite wisdom imparted into a blog post for every day of NHBPM....I promise to make it up to you somehow, k?

Find your silver lining and be awesome!

#NHBPM 23 of 30 - Something your doctor has taught you

What have you learned from your doctor?

Which one? There’s a gastroenterologist.  A dermatologist.  A hematologist. A psychologist. An infectious disease doc. Of course the “primary care physician”.  A surgeon.  Oh, the surgeon.  THE surgeon.  I’ve definitely learned the most from my surgeon.  We’ve “been together” for 11 months  now – that is EONS in the land of military healthcare where everyone is moving or deploying and you can easily go through 5 doctors before it is YOUR turn to move.  She left me once – deployment – but true to her word she is back and picked up right where she left off.

I wish everyone I knew that had to have surgery could have her for a surgeon.   What has she taught me? 

Vulnerability. The day she came to tell me I had developed a fistula. Her face when she walked through the door – a combination of pain, helplessness, confusion mixed with the concern of a mother and someone who has pledged to “do no harm”.   

How to be humble.  When things continued to push the borders of typical surgery related issues she sought out the physicians who could help.    She was never afraid to say “I don’t know” and quick to take all offered suggestions into consideration.    

Transparency. She cried.  She sat in my hospital room with my family and she cried.  And she looked at my husband in the eyes and told him she was gonna fix this thing if we would let her but she understood if we wanted to move onto to someone else and she would make that happen.  She curses.  That might offend some people but it just makes me like her that much more.  She likes coffee, she hates to run, she drinks sangria and she just put a pool in her backyard.  I bet most people don’t know stuff like that about their doctors.  But that is who she is. 

Kindness. She NEVER seems put out by me.  The emails, the phone calls, the pages.  She returns them all.  She IS a kind heart. 

Selflessness. She’s in the military, so that is just a given.  I remember her coming to my room in her civilian clothes “just to check on you” as she would say on her way to an event with her family or on the way home from something.  I asked her to walk with my team for CCFA’s Take Steps this year.  She had guests in from out of town and came anyway – after spending the morning at Sea World with her family.  

Strength.  I don't know how to put this one into words.  She believes in me (where my health is concerned) and that empowers me and strengthens me physically and mentally.  It is through HER strength that I am able to find mine is this conundrum that is IBD.

Simply put, she is awesome and I don't believe for ONE SECOND that if I would have been paired up with another surgeon I would be the post-op person I am today.

At Take Steps San Antonio 2012

me, Dr. Pottymouth and Shana my WOCN.

I have since added another WOCN but she had to leave early :)

 

Find your silver lining and be awesome.

 

 

#NHBPM 22 of 30 - days late and dollars short

Being healthy has caused me to put off writing - how's that for a turn of events!?  I've been out and about doing things I haven't been able to do for a LONG time and just haven't sat down to write.  So, I'm a couple days late on the thankful post and a few dollars short because I was black Friday shopping!

What I'm thankful for - God, family, friends, modern medicine, PICC lines, blood transfusions, sushi, Cholula, coffee, LEGOs, basketball, water, my husband's career, medical coverage, the internet, US military, my education, the CCFA, Texas weather, the NFL, king size beds, relationships, plastic surgery, toll roads, Greek yogurt, The Chew, technology - most of the time, the school bus and my health. 

Find your silver lining and be awesome.

#NHBPM 20 of 30 - Alternative treatments, etc.

Yeah, yeah - I missed a couple days.  That'll happen this time of year I suppose - trying to decorate for the holidays, preparing food and enjoying these 2 little people that God blessed me with.  Things are a LOT different around here compared to last year.

The day 20 prompt is "Write about alternative treatments / regimens / medicine. What do you support? What is crazy?"  Oh boy.  I don't want to offend any of my well meaning, heart in the right place, just trying to help me friends - so please do NOT get your feelings hurt.  If you think you are going to get your feelings hurt, click away and don't read any further.

Let me start off by saying that I support whatever people want to try.  GO FOR IT!  If you think it is going to help your disease then by all means, try it!  I've tried some "alternative" treatments and when I say alternatives I don't mean eating tree bark. I mean manipulating other systems in my body to try and lessen their effects on my GI/immune system. 

Essential oils, diet changes, diet restrictions, juicing, vitamins, fish oil, probiotics, etc.  I've heard pretty much all of them.  And I know there are more than that.  I appreciate that people are concerned about me and want what's best for me.  I really really really do.  But you know what?  Sometimes I've just had enough.

The inundation of these "miracle treatments" really hurts my feelings.  It is as if to say "that surgery you went through was not needed, you should have just tried (insert remedy here)".  It's hurtful, demeaning and condescending since I'm being honest.

My favorite thing about these treatments is that they most often are suggested by people who have NO IDEA what it is like to live with Crohns' disease/IBD.  My colon and rectum were turning INSIDE OUT and bleeding to the point I needed blood transfusions.  I was spending HOURS of my day running back and forth to the bathroom - most of the time in so much pain I couldn't even describe it.  I had lost SO much time with my kids, family and friends because of my health.  But yeah - I totally should have tried eating soaked tree bark.  Or vitamins.  Or sustaining my body solely on juice.  Or any of the NUMBER of things that have been presented to me over the years.

KNOW that I love each and every one of you who has suggested these things - and YES, they probably did work for so and so's cousin's best friends hairdresser to put a flare at bay.  It does NOT mean it cured them of Crohn's disease.  You know why?  Because there is NO CURE for Crohn's disease.  Your symptoms may wax/wane but they will always be there waiting to rise up at the most inappropriate times.

Find your silver lining and be awesome.

#NHBPM 18 of 30 PART 2

 

 

 

 

Find your silver lining and be awesome

#NHBPM - 18 of 30 Making my own rules PART ONE

And apparently I can only use so many pictures in a post - so please see part 2 for the conclusion.

#NHBPM - 17 of 30 GUEST POST from my GI!!

I'm excited to share a guest post from my GI, Dr. Anish Patel. God love Dr. Patel - I don't know that he knew exactly what he was getting into when he agreed to take me on as a patient! I had gone through the GI clinic at my hospital - displeased with my original doc and my surgeon set me up with someone else. Then he deployed and so Dr. Patel was asked to step in....yay military healthcare! Dr. Patel is completing his gastroenterology fellowship in San Antonio. He also has a special interest in IBD and as you will read, is dedicated to learning as much as possible about Crohn's and Ulcerative Colits. Thank you Dr. Patel!!

I posed 2 of the alternative prompt questions to Dr. Patel, sort of. What advice do you have for a newly diagnosed patient and what advice do you have for someone pursuing a career in gastroenterology (thought that would be fun for us patients!) - here is what he had to say - UNEDITED!!

1. What are 3 things you would tell a patient newly diagnosed with Crohn’s disease?

a) Life changing: The disease along with having the diagnosis can be life-changing. I am not saying that your whole world will be turned around and/or you can never do anything and/or follow your dreams, I put it more like a speed bump in the life road. I tell patients that the disease is what you make of it but it will change the way you perceive life but should not change what you want to make out of life.

b) Understanding: Crohn’s disease is a complex disease and many factors play a role in its pathophysiology. Basic understanding is the key to controlling and living with Crohn’s disease. My goal with patients is for them to understand that nothing they did caused the disease to occur; partly is genetics, partly is environmental factors and partly other factors that are still trying to be figured out. Another key factor is for my patients to understand their bodies (know their trigger symptoms) and another goal is to understand what is Crohn’s disease/flares versus what is not because this can become a gray zone.

c) Acceptance: This is a hard concept for patients to grasp and is the one that tends to be a difficult one to relate in a doctor-patient relationship. I take pride in having patients learn that the disease is there and that typical “why me?” or “I did everything right in life?” concepts only hurt the psychological aspect that encompasses the disease. I tell patients that owning their disease and living a life free of denial makes you a better patient overall and helps you take control of the disease.

2. What 3 things would you tell someone who was thinking of becoming a GI doc specializing in IBD?

a) Rewarding: For me, IBD started to become a true interest after my 1st year in fellowship. I think the true benefit is the continuity you have with your patients along with the doctor-patient trust. It was great to see patients on therapies that worked and start to live a fulfilling life free of the symptoms that burdened them. My one prime example is a patient that had moderate-severe CD that had escalated therapy up to remicade but showed evidence of failing. She was actively in college but noted that her 1st three years were not enjoyable primarily due to her symptoms. After switching to cimzia, she noted that her last year in college was the best time she ever had and was forever thankful for helping control her disease. I am not advocating that one medication is better over another, but it is fulfilling to see those that succeed.

b) Frustrating: Now, frustrating is always considered to be a negative connotation and you would think that this would drive you away from even thinking about IBD management. In my terms, frustration has led me to better explore the disease, to include pathophysiology, and delve into the newer therapy options that are available. It has led me to become more experienced and knowledgeable on a disease process that, yet, has no cure but newer medical advances are making goals in controlling the disease. It has led me to pursue further training through a generous grant from the CCFA to have the opportunity to train for one month at UCSF, a leader in IBD care, to better gain expertise in the field. So, my frustration is not that the disease has no cure, it’s a push to make myself better for my patients.

c) Nerdy: If you’re a doctor, then truly they are already considered a nerd. In regards to IBD, there a lot of research opportunities that are available. My passion is clinical research to include drug trials. With the advent of newer treatment molecules, this is a prime time period to delve into more research. I think that since this field is evolving almost every day, it is a great opportunity to find a niche for oneself.

Did you see that part where he is going to study on a grant funded through CCFA?! My fundraising at work.

Find your silver lining and be awesome!

#NHBPM - 16 of 30 use a picture/video to inspire a post

How apropos that this is the prompt for today - seeing as how I JUST got a set of pictures from my GI from my recent capsule endoscopy! I have Crohn's disease. I had a total proctocolectomy with end ileostomy in December of 2011. Since then I have had some hurdles to get over with complications of surgery and extra intestinal manifestation of Crohn's disease. Because of these issues, my GI (and surgeon) felt it was best for me to get a GOOD look at my small intestine to be sure there is no active disease in it.

Enter - capsule endoscopy. A traditional endoscopy would not show enough of the small intestine to be a thorough exam, because the scope can only go so far in the twisty-turny small bowel. And an ileoscope (same idea, just through the ileostomy) has the same issue on top of the possibiity of damaging the ileostomy and/or the small intestine. With my track record of complications we all decided it was best for us to go with the capsule!

Down the hatch! So, I swallowed the pill cam and went on about my day. Unfortunately, it wasn't such a smooth ride. I may have some food related motility issues because even though I did clear liquids for the entire day before the procedure AND flushed myself with Miralax, the pictures didn't turn out so great.









Short video OF the video taken by the pill cam complete with commentary from my GI and I (which is pretty funny if you ask me!)



Soooo, needless to say I got to do it over. It was like groundhog's day.

Only this time I did clear liquids for THREE days before hand and still cleansed with the Miralax.

We got better images - thank GOD! I haven't seen the video yet, but my GI did send me a few still shots in an email.

You should be able to click on it for a larger view. The coloring is a bit off because it is scanned but they are still pretty good images.

The good news is - there are no signs of active disease in my small intestine - YAY! The bad news is - there is some redness that is "concerning". Not "alarming" just "concerning". What does that mean? It means I get to do ANOTHER procedure the week after Thanksgiving. The traditional upper GI endoscopy is on deck. No clear liquid diet before hand and no cleansing with Miralax - hooray! I will however be sedated - again HOORAY so I'll have to have an "escort" the day of. He will take biopsies of the duodenum (which is where the redness is) and send them off. Results will probably be back in early December but definitely before Christmas.

Why do these images inspire me? Because they remind me - and I hope now they will remind you or they have educated you - that Crohn's disease is forever. You can't get rid of it. YES, I had surgery to take out the "sick" parts, the parts that were making my life a living hell. BUT, I can get new sick parts at anytime - which is why I go through these tests and continue to take medication. I also hope that I am able to ease the minds of anyone who may be considering this type of testing. I was skeptical about that big thing popping out of my stoma. I was happy to find out there was a "practice" pill which I took first and of course it came out just fine.

If you have any questions about this procedure I am happy to share more detailed information about my experience - just remember that everyone's experience is different and what happened to me may not be what happens to you.

Find your silver lining and be awesome!

#NHBPM 15 of 30 - Nominate someone for an award

and explain why.

I nominated Sharon Saeed for WEGO Health 2012 Health Activist Award for her work on the Facebook community IBDJourneys. Sharon has brought together a community of people who are working to raise awareness for IBD. Sharon is always there to share a kind word, offer encouragement and share information. Even from her own hospital bed, she checks on other participants who have expressed they are not feeling well or who are also spending time in the hospital.

Sharon facilitates conversation and encourages everyone to participate in discussions so that IBD can have a bigger voice in the health community! Cheers Sharon and keep doing what you are doing!

Find your silver lining and be awesome!

#NHBPM 14 of 30 - Advice for dealing with negativity

Advice for dealing with negativity in your community. I take this to mean what do you do when you read a post, a comment, a tweet from a neg bag and it relates to IBD - Crohn's or Ulcerative Colitis. So that is where I am coming from.

I have the very unique situation of receiving my treatment at a military hospital. Not just any military hospital though - I go to Brooke Army Medical Center in San Antonio, TX. It is one of the leading centers to heal our Wounded Warriors. To say it is a humbling experience to walk the halls would be the understatement of the year.

During my lengthy hospital stay following surgery for my ileostomy, I had a bird's eye view of the Fisher House. The Fisher House is similar to The Ronald McDonald House in that families may stay there when their loved one is receiving treatment. It is a fantastic organization and my family was a recipient of their generosity when I was first diagnosed and my husband was able to stay there since I was hours from our home duty station.

I would watch as loved ones would come across the parking lot, presumably to visit their wounded warrior. Sometimes I would watch Wounded Warriors on crutches come through the same lot, some even pushing themselves in their wheelchairs. I'd wait behind them in the chow line at lunch as they balanced their tray in their lap. Watch them move down the hallway with such honor and courage and think to myself "I am going through NOTHING compared to them".

When someone out there in IBD land starts to go on the negative - for whatever reason - I ALWAYS try to bring it back around to something positive. What GOOD things have happened because of your disease or surgery? You realized you are stronger than you thought? You started running? You met awesome people through CCFA? You felt accomplished participating in a fundraiser? You discovered new foods LOL?!

I think back to those days I was in the hospital and remember the faces of those warriors - NOTHING measures up. Do I have reason to cry - have a pity party - whatever? Absolutely - but to be NEGATIVE about a surgery that saved my life. I won't do it. To be NEGATIVE about the complications I experienced? I won't do it! Because of what I went through SOMEONE learned something - a doctor, another patient, a nurse....someone. And if THAT means that by going through it I in the end HELP someone...then it is a POSITIVE. I wouldn't trade the people I have met or the experiences I have had....I believe that everything happens for a reason, you MUST find the silver lining even when you think your situation is the worst of the worst.

Find your silver lining and be awesome!