A Year in the Life of a Crohn’s Patient

This year has been full of ups and downs, as usual, but overall it has been pretty amazing.  Let me give you the top 6 reasons why (in chronological order).

5.  Team Tougher Than IT! raised over $3,000.00 during our Take Steps for Crohn’s and Colitis fundraiser  walk in June and received an award for being one of the top fundraising teams for the Indianapolis Take Steps chapter.

 

4.  I found a new supplement drink and vitamin pack called IT Works! and it actually works!  The inflammation levels in my small intestine have dropped from 431 (April level) to 171 (August level)!

3.  I was blessed to be a camp counselor this summer at Camp Oasis.  This is a camp for kids with Crohn’s and Colitis.  It was heartbreaking, yet very encouraging at the same time.  These kids are so strong and brave!  I think they taught me more than I taught them.

2.  The Indy Undie Run was a huge success during Awareness Week for Crohn’s and Colitis.  Around 76 people signed up this year.  I was a star on Fox 59’s morning news and we made headlines in the Indy Star…I’m talking pictures and article!

1.  The best part about this year for me, is that this year has been the healthiest year for me since my diagnosis back in 2008!!  I’m talking no hospital stays at all people!!  It’s Awesome with a capital A!

This year has left me feeling truly blessed!  Jeremy and I celebrated our 1 year wedding anniversary and are happily approaching our second in April.  He recently received his dream job as a Sheriff Deputy in Terre Haute, and we are looking to buy our first home!!  Exciting things are happening for us…even if they are all in God’s time.  I also started teaching dance again!  I have 4 classes ranging from hip hop, jazz, and lyrical.  A lot of work, but so much fun!  It has been a busy year which hasn’t provided much time for blogging.  I can’t help but want to get out and experience life, now that I have it back again.  I can always write about it later. 

Speaking of writing, starting in January, I will be embarking on a new challenge.  So many people have told me I need to write a book…so I’m going to try.  I haven’t decided if I want to do a fictional story based off my true story or just write my random craziness.  Stay tuned for exerts. 

A great year in pictures.

 

 

I'm a God Parent!

 

March Madness Snow

 

Anniversary Picture

 

Julie's Bachelorette Party

 

Counselor buddies!

 

5K Color Run

 

Dave Matthews Band Concert

 

 

IU Football

 



 

Girls Night

 

 

UIndy Reunion

 



Doty Halloween Party

Oversized Blowup Ornaments

 

 

Living for the Future

It was a chilly night in November and we were trying to have a nice date at a restaurant.  The only problem was that I was nowhere in sight.  Instead of eating a warm meal and enjoying an evening chat with my love, I was dying in agony alone in a bathroom stall.  By the time I returned to the table, I had completely missed the meal.  Jeremy had finished his food and mine stared at me cold.  It didn’t matter because I was too nauseous to eat it anyway.  Being the good man that Jeremy is, he took me to look at engagement rings.  I was too weak and nauseous to even consider enjoying this special moment.  That was when I decided enough is enough!  I had spent basically the last three years with my ass stuck to a toilet.  Something had to change.  I needed my life back.  I needed control.  The only option left was surgery. 

On August 4, 2011, I underwent five hours of surgery where my entire colon was removed.  As I awoke, I felt like a toxic waste dump had been removed from inside me.  The only word I can use to describe how I felt was clean.  I felt clean for the first time in years!  It was an amazing feeling.  After my doctor told me my colon was the size of a softball or that of a 300 pound man’s colon, I knew I had made the right decision.  I could finally start enjoying life again and actually contribute something to the world.

Two years later, I found myself at Camp Oasis.  Hesitant at first to be a counselor for kids with Crohn’s Disease and Colitis, I jumped into the week with an open mind.  I did my best to help the kids experience a “normal” camp experience.  I participated in all the activities with them and even was the “butt” of some of their jokes. 

Unfortunately, camp couldn’t all be about fun and games.  Questions started popping up about seeing mental health professionals, depression, dating, having a career, having children, and the uncertainty of the future in general.    These discussions hit me in the inner core of my heart.  I understood their fears and their questioning of the future.   I had lived them.  It broke my heart to know that these innocent young ladies were terrified of growing up for fear that they may not get to have a future.  No person that young should have to know fears such as these!  What was I suppose to tell these girls asking for answers?    

I told them the only truth I know.  I am telling you my truth for those of you that might be asking the same questions and experiencing the same fears. 

1.  “Have you ever seen a mental health professional?”  Yes, and it was amazing.  I could talk to someone who was not involved in everything and not feel like I’m burdening my family and friends with my sob stories.  I was given great tools to work through situations when the floor gets pulled out from under me and I’m free falling into the unknown.  (Which is always the case with me for some reason?)  I urge you to go talk to someone and get help if you are having depression or just need to get a few things off your chest.  It’s not a sign of weakness, by doing this.  It is showing that you care about your wellbeing and you know you can’t go through this alone.  Struggling with a disease alone is too much for one person to handle.  Please don’t go it alone.

2.  “How do I date and talk to people about my disease?”  If you are in the dating field and you think there is a possible future, be honest about your disease.  I usually tell people I have a disease that eats away at my intestines and make me poop a lot.  In my experience as an adult, I have never had a negative response.  Most people are interested and want to know more about it.  CCFA has good resources that can help explain your disease if you are lacking the words.  I was blessed to have met my husband and had already been dating for 6 months before I was first diagnosed, but it was because I didn’t settle that allowed me to have a real man by my side supporting me the last five years.  If you are dating, I pray that you find someone who loves you for who you are and will love you through the good, the bad, and the smelling situations. 

3.  “Will I be able to have a career?”  Yes.  I have one that is blossoming.  Several other people with Crohn’s and Colitis are thriving working adults.  Is it easy to work with a flair up?  No, but hopefully you chose a profession with a bathroom nearby, a lot of vacation/ sick days, and a supportive work environment.   I have found this work environment aligns well with being sick.

4.  “What if I give my children my disease?”  This is a question I struggle with myself.  Passing my Crohn’s disease down to my children is one of my biggest fears.  I’m not sure I could be emotionally strong enough to watch my child suffer like I did.  Having Crohn’s has definitely made me a stronger individual, but this is something I’m not sure my strength would withhold. 

At camp, we did a fire pit where we wrote down our fears and through them into the fire symbolizing the release of our fears.  This was my fear that I had written down.  After my experience at camp, I’m choosing to not let my fear stop me from trying to have kids in several years.  This is something both Jeremy and I want, and I have come to realize that no matter what happens, it will be worth it in the end.  In the meantime, I will be praying like crazy for the future of my children and their health.

5.  “What will my future hold?”  I don’t know.  I do know that I lean on this promise every time I find myself doubting and fearing for what is to come:  "For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future." -  Jeremiah 29:11.  Sometimes it doesn’t always feel like I’m prospering, but looking back over the past five years and all that I have been able to accomplish, I know that this verse holds true in my life.

 

For the readers who are struggling with the same questions my girls at camp did, I hope I provided you with some good tips.    You are not alone in your feelings, questions, and fears.  Don’t be afraid to reach out and ask for a helping hand. 

 

 

I didn't sign up for this!

Today as I read my morning devotional, I came across some perfect advice for putting things in perspective.  If you are a Crohn's patient or suffer from any illness, it can difficult to have a positive perspective on things all the time.  There are several times when I look at someone else's seemingly easy and carefree life and think to myself...I didn't sign up for this!  My life is not what I had in mind for myself!  I get in a self-pity mood, and I am consumed by thoughts of "why me?" and "I'm too young to have to deal with medical bills, watching what I eat, blah blah blah."  You get the picture.

As I read the devotional, the verse of the day was "You intended to harm me, but God intended it all for good ..." Genesis 50:20a (NLT)  Throughout all the trials and tribulations I have been through the past five years, I have seen this verse come to life for me.  The Crohn's disease that intended to harm me and is slowly killing my insides, can be viewed as a blessing in disguise.  Through my disease, I have grown stronger in my faith.  I have been able to mentor other people going through a difficult time and lift them up in their times of struggle.  Crohn's has blessed me with several new relationships and has allowed me to raise awareness and funding for research that may not have been raised otherwise.  Crohn's has most importantly given me a platform to share my faith with others who might not otherwise hear about the love and grace of God.  This is the best blessing of all!

Continuing to read, the story of Joseph was revealed.  This story is about a young man who was sold into slavery by his jealous brothers, and then eventually put into prison for being falsely accused of raping the Master's wife.  Joseph could have had the perspective, "I didn't sign up for this!" but he didn't.  Instead he kept his focus on the goodness of the Lord and eventually was named Governor. 

I love how this story portrays how we should behave when things don't go our way.  Though it is hard, Joseph provides a great example of keeping focused on the Lord and leaning on his promises.

My hope for you today, is that you can find renewed strength from someone else's positive example.  If Joseph can stay focused on God and be blessed by his love, then so can I.  This may not be the life that I would have chosen for myself, but I'm not sure I would change my experiences.  They make me who I am today, and I'm thankful for them.

Romans 8:28, "We know that all things work together for the good of those who love God: those who are called according to His purpose." (HCSB)

Subtle Reminders

"For I know the plans I have for you, " declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."  Jeremiah 29:11

Today, God held me. He reminded me of his wondrous love and his never failing promises. Today, God reminded me he is hears my cries. He sees me. He knows me. Today was beautiful.

Today, I awoke with a heavy heart. I had finally been alone. I had finally been free to focus on the reality of my life; I have an incurable disease and my body rejects everything that is supposed to "help" it. As I laid in bed reminiscing over the past five years, the pain and memories I had tried so hard to suppress were creeping back into my mind. The moment I found out I had Crohn's Disease, the shingles, the anaphylactic shock, the accidents, the lonely painful nights, it was all there staring me in the face.

The alarm went off. As usual, I pulled myself together as I pulled myself out of bed. It was time to face another day. It was time to be strong, keep calm, and carry on. It was time for church.

I walked into church, found my pew near the front, and sat by myself. A woman I am close to asked me if I was ok. I explained that I was hanging in there and my medications were no longer working, but I am fine. I will be fine. Church began to start and another family moved in to the pew to sit next to me. We rolled through the announcements, greeting, a praise song, children's time, and now it was time to offer up prayer requests. As I stood up to ask for prayer for strength, hope, and healing, I broke. I didn't expect this and I didn't want to, but I couldn't hold back the pain and frustration any longer. I cried. I cried my way through a prayer request and sat back down in my pew. What happened next was beautiful.

As I cried, alone, I felt a hand on my back. It was the woman behind me offering a comforting rub on my back. Another woman sitting a few rows ahead of me came to me and hugged me. She understood. Another man, in the row ahead of me told me loved me and is praying for me. God was there. He was reminding me.

During another praise song, the man with the family sitting next to me held me as I cried. He offered to pray for me after church. I accepted.

Church went on and ended. Some more people came to me and held me as I cried and explained the heart break I was feeling. The hopelessness. The fear. They cried with me. God was there. He was reminding me.

After church, I met up with the man. He took me to the prayer room and told me he felt the presence of God during the praise song when I cried in his arms. He felt God calling him to pray for heeling over me. He told me God has asked him to do this over others and he told me their miraculous results. We prayed. We prayed with all our might and faith. We prayed for God's will to be done and for healing and comfort. God was there. He was reminding me.

God is real. He is alive. I know him. I feel him. He was here with me today. He was in every hug, every tear, and every comforting word. Today, I was held by the arms of God. He was reminding me. He was reminding me that he loves me! He has not forgotten me and he sees my tears. He was reminding me that he does have plans for me and he will keep his promises. He will never leave me nor forsake me. He will never turn his back on me. God loves me. Today, God was there. God was reminding me.

I don't know what my future holds.  What I do know, is God will be there every step of the way. I am not alone. I believe God has the power to heal me, if that is his will. If his will is to use my suffering for his glory. I will follow his will. I have accepted that path and will take it where ever it leads. In the end, I will be healed and God's glory will shine through me.  All I need to do is hold on to the Promises.

"Hold On to the Promises" by Santcus Real

Surviving Crohn's 101: A Survival Guide for New Crohnies

This topic is inspired but the unfortunate news of yet another friend being diagnosed with Crohn's disease,  Oh how I'm sick of receiving news about Crohn's, but that's another blog for another day.

If I could go back to my 20 year old self and provide advice for how to get through the suffering that is about to unfold, this is what I would say.

1.  Express emotion. 

When you find out you have just been diagnosed with Crohn's, it's ok to be emotional.  This is one of those times you don't have to be tough.  Those times will come, but for now let it out.  Don't let someone tell you that "It's just the Prednisone making you emotional."  NO!! Your life has just changed forever!!!  Cry, throw ice at a tree, go running, journal, etc.  Find a release for your emotion and let it out.  *Please note that I am suggesting you find a healthy outlit.

2.  Accept your circumstances

Once you have come to terms with this life changing news, accept it.  Being in denial is not going to make you feel better.  It will only lead you to party of pity for oneself that includes you and oreos.  This ok for a day or two, but passed that, it's time to move on.  Acceptance can be accomplished by researching about the disease, reaching out to support groups, talking to others who have been there done that.  It helps to know what to expect and when you take charge you feel like you have some form of control back. 

3.  Learn to change

Your life will most likely never be the same again.  At least, it wasn't in my case.  If you have a mild case of Crohn's then Praise the Lord!! For you are blessed! 

If you are like me and everything is chronic and severe, then learn to change.  You will have to learn to learn to eat new foods or go without your favorite foods and like it whether you like it or not!  Low residue, glutten free, liquid, and lean diets will most likely be apart of your future.  *Note:  This is the time to be tough and suck it up.  It's for your own good. 

A variety of concontions or otherwise known as Western Medicine will be injected into your body like you are some chemo patient.  ***Be thankful you are not!!***  *Note:  Time to be tough.  You will take these as your doctor orders and you will go through a series  of  hopes and then failures until hopefully something works for you.  Unfortunately, I'm not fortunate in that area as nothing ever seems to work.  I pray you will have better success.  You will learn to take your medicine from a divided container marked with the beginning on each week day so you can remember to take all of your vitamine, supplements, pills, etc.  You will keep a calendar of your injections, if you have to have them.

You may also start tracking your eating habits and the effects they have on your bowl movements.  In my case it didn't matter.  I could drink water all day and still go the same amount as if I had just eaten a greesy pizza.  *I don't recommend eating a greesy pizza.  At least with the water there is less abdominal pain.

4.  Always know where the restrooms are

This is a vital step in surviving Crohn's.  It aleviates a certain amount of stress and if you can stay near them then that always helps too.  I found it helpful to always have an "Exit" plan for wherever I was.  Not saying I made it to the exit before my bowl movement made it to it's exit, but it helps to be prepared. 

5.  Diapers are not that bad

There may come a time when you have to lose your pride and summit to buying Depends.  As a 21 / 22 year old, wearing diapers was a huge gulp of pride.   Underwear was just getting to expensive and I was tired of throwing away my favorite pairs.  Besides no one can tell unless you tell them.  If anything they give an extra junk in the trunk to your flat hospital bed butt!  Diapers were great for long road trips when I couldn't even go 5 minutes without going.  They are easier to clean up when you have an accident and also prevent messes on car seats, your jeans, etc.  They take off the stress of accidentally going in your pants.  Once you get over the mindset of "I'm a 22 year old wearing diapers,"  they are not that bad.

6.  Count your blessings

Things can always be worse.  I find counting your blessings one of the most important steps to staying positive and motiviate to survive.  Focus on what you do have instead of what you don't have.  As bad as this may be, sometimes looking at someone's crappy circumstances can help you appreciate your crappy circumstance.  Here are a couple of blessings off the top of my head:  1.  You do not have cancer.  2.  You can survive Crohn's.  3.  You can have a "normal" life.  4.  Crohn's can be controlled with diets and medicince.  4.  You have supportive family and friends.  5.  You can still work.  6.  You have good health care. 

You get the picture.  Stay positive.  Romans 12:12 says:  "Be joyful in hope, patient in affliction, and faithful in prayer."  Three important truths to live by.

7.  Have Faith

This is probably my most important key to survival, but as I am trying to go in order by process, it is number 7. 

I don't know what I would do or how I would survive if I did not know God and have a personal relationship with him.  I cannot count the times that I have only had God to count on.  At 3:00am in a dorm room, on the toilet, who are you gonna call?  Ghost Busters?? I don't think so!!!  No one is really there for you.  You are alone.  You are week.  You are in pain.  All you can do is pray you make it through the night, and in that moment you know God is there and you will see the sun again.  I know God may not heal me, and I accept that, but knowing he is there and he has a plan for me through all of this does bring me comfort in my times of doubt.

James 29:11 says "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."

Without his promises, I don't know how I can have hope.  I think I would go into a deep depression and feel that all hope is lost, but with God "I can do all things for he strengthens me."  Philippians 4:13.

 8.  Take control

Don't Let Crohn's Control You!!  Make a decision to live your life as complete as you can.  I know there will be days when you are so exhausted you can barely get off the couch except to sprint to the bathroom.  Don't let this be your daily life.  Strive to be involved in life.  Do things with friends and family, even if it is for 30 mintues.  Try a light workout such as Yoga.  Just do something that makes you feel like yourself.  Don't lose yourself. 

9.  Use  this for the "Greater Good"

Use your disease to help others who are suffering.  There are not many perks that you can receive from this disease that are greater than helping another who is in pain.  Provide them comfort when they are scared of what is yet to be.  There is nothing greater than helping someone else get through their daily struggles.  It somehow makes all your suffering worth it, just to help that one person find some peace.     

 ^"Praise be to the God....The Father of compassion and the God of all comfort, ⁴ who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. ⁵ For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ."  2 Corinthians 3-5.

10.  Spread the word

Tell everyone about Crohn's.  This not only makes your life less stressful, but it also brings awareness and support for an incurable disease.  The more people know about what you are going through the less they judge and are confused.  The more accepting they are of your interupting bathroom breaks and the weird diets you are on.  It just helps to get the truth out there.  You feel better and people don't really care and usually love you anyway.  If they can't accept this part of who you now are, then they are morons and not worth your time. 

I hope this little Survival Guide can help you get started on your journey or help you understand what a love one may be going through a little bit better.  As always, I wish you good help and happiness.  God will be your sunshine through the rain. 

The Baby Card

As you know I have recently been married. Jeremy and I have almost been married a year!  My how the time flies.  In a couple of years when we are settled in a house we would like to start adding to our family.  That excites and scares me at the same time.

You see Crohn's is a genetic disease.  Which means it can be past down through generations.  Which means my child could have Crohn's disease.  If that were to happen something in me would permanently break. 

I don't know if I would have the strength to watch my child suffer and stay up through the night because they are in so much agony.  I don't think I could watch my precious baby be hooked up to tubes and IVs to receive treatment and sit in the hospital instead of being on the playground with their friends.  My heart would break.  

It's one thing for me to go through it, but to watch helplessly as my child suffers, that's one thing I may not have the strength for.  I'll gladly take everything 100 times worse to not have to watch my child go through any pain.     

This is why I ask you today not to donate to CCFA for me, but for my future children.  Your donations will go towards research which I pray will find a cure so that my children will not have to suffer as I do.  I couldn't bare knowing that it was my fault and that they did nothing to have to go through this except share the same genes as me.  I can only put them in God's hands and hope he heres my quiet cries at night when I beg him to give me a healthy baby in my prayers. 

Please donate today and give someone a happier and healthy life.  Thank you for your love and support.

http://online.ccfa.org/goto/brandiethomas