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Monday, May 30, 2011

All the help I can get!

I've had my own "fairy godmother" for the past couple of weeks. Mrs. B. has sent me several emails making suggestions for my column and my blog. Suggestions about what information is important to the public. She asked me to send her my story. You can see it here.

I'm getting so close to my fundraising goal. I've raised just shy of $3000. If you've taken the time to read my blog, won't you consider making a donation.

One month to go!

One month! I'll be in Hawaii, running/walking my little heart out.

Monday, May 23, 2011

Today is wear purple day!

Wear purple today! Support the Crohn's and Colitis Foundation's efforts to find a cure for IBD!

Saturday, May 21, 2011

Garage Sale Day!!!

Today turned out to be a great day! I've been collecting donations from friends and co-workers all week to sell at my garage sale to raise money for the CCFA. Even though the day was gorgeous, the sale got off to a slow start. "Y" a representative from Thirty one gifts set up a table in my drive-way too. So at least I had someone to talk to. But I ended up with a few hundred dollars to send in this week.

The highlight of my day was a couple that came because they saw my flyer and their niece has Crohn's. They said they would make a donation even if they didn't find anything to buy! I also met a young girl that has UC (like me). She came just to find out more about the foundation and to talk to someone that has been through what she is going through now. I gave them both my card, I hope they keep in touch.

If I had not sold one thing today but those three people still stopped by, it would have been worth all of the effort and time. Just being able to share experiences and give a little hope.

Tuesday, May 17, 2011

April's Story

As many of you know, I have been through quite a bit with Crohn's Disease.  I was diagnosed in October of 2001 after being sick all summer and then having an emergency appendectomy.  Then something wasn't quite right so they went back in three days later and took out a foot of my small intestine and part of my large intestine.  They came in the next morning and told me I had Crohn's Disease, which I had never heard of at the time.  Well, after 2 emergency surgeries within 3 days, and alot of prayers, I remained in the hospital for about three weeks or so and then recover was another two months after that.  It was not fun.  I was living in Northern Virginia at the time and I missed my cousin's wedding, in which I was the maid of honor, which was devastating to me.  The sadness of not being with my family and the guilt of feeling like I was letting my cousin down were the toughest part of all.  I never complained that I went through all of that but I did let God know that I was upset about missing Anne's wedding.  I had to learn that heartbreaks will happen but God is still in control and has a plan to use everything for good if we allow it.  

Well, that was October of 2001.  About 15 months later, in Jan of 2003, I ended up with a massive ovarian cist that had to be removed via another emergency surgery.  I've never had to worry for too long about any surgery because almost every surgery in my life has been emergency.  They removed the cist, my left ovary and fallopian tube, and left the right ovary and tube damaged.  Crohn's made the entire surgery and recovery more difficult and we left the hospital on my mom's 50th birthday.  The recovery from that surgery was about a month.

I got married in October of 2003 and my Crohn's seemed fairly under control.  About three years into our marriage, we had no children so I went to the doctor to have some testing done to see what could be getting in the way.  Well, it really was no surprise when Dr. Garcia explained that my fallopian tube was blocked and recommended that I have the surgery to remove the adhesions from the tube to increase my chances of getting pregnant.  Well.......let's just say that didn't go so well.  I woke up from surgery with Dr. Garcia explaining that it was unsuccessful and that he had never seen anything so bad.  He said I had no chance of getting pregnant, nor should I carry a baby because it would actually be a danger to my life with the mess that's inside me.  I had adhesions everywhere and he couldn't get near where he needed.  One of the places he removed adhesions from was my intestinal wall.  Well, I went home because I seemed to be doing ok.  That night things took a dramatic turn but I begged Craig not to take me back to the hospital because I just thought my Crohn's was making my recovery more difficult.  That was Friday.  On Monday morning he put me in the car and took me back to the hospital because I was beyond sick and miserable.  As it turns out, my small intestine had burst open Friday night so needless to say, on Tuesday night I had lifesaving surgery.  What I would learn months later is that the surgeon was not confident that I would make it.  He still didn't expect me to make it through the following weekend.  During the surgery, they had to give me an ileostomy which lasted 10 weeks.  That go around was much worse than any other one and by this time in my life, most everyone I knew learned that I had Crohn's disease if they didn't know already.  

During the first few weeks, I struggled more during that time than ever before with the disease.  It was definitely a dark time for me.  Craig wouldn't allow visitors because I was in CCU and was still so sick that I couldn't handle visitors.  One thing I did learn during that 4 month struggle was that I was beyond blessed.  I wouldn't wish Crohn's on anyone but I learned that I worked with some amazing people, all who wanted to help in any way they could.  I went to church with an even more amazing group of people who did anything they could to help us.  They mowed our lawn, brought us meals, sent encouraging cards.  The love that was poured out on us was more amazing than anything I could've imagined.  

Since then I've done ok.  I go through ups and downs with Crohn's.  In the fall I learned that my Crohn's is active so I've worked very hard at remembering my medicine.  My GI doc warned me that I run the risk of more surgery if I didn't get better.  Needless to say, I started remembering to take it and I've been doing well since then.

One of the things that I love about this fundraising challenge is that it's a half marathon.  Most of you know that I love to run.  My dad got me started running in elementary school and I've been running ever since.  Someone said to me in the last six months that they did not enjoy running and couldn't understand how I run so much.  I explained to her that I run because I can.  I remember being in the hospital in the past and wondering if I would be able to run again and if so, how long until I could.  I thought I'd just about give anything to be able to run again.  Starting all over to get back in shape and feeling like your body has defeated you is never fun but running is simply something I can't live without.  I'm not letting this disease take running away from me.  Now I might often run along Blanding so that I have bathrooms close to me but I'm not going to stop running.  So that's all the more reason why this half marathon is so important to me.  I understand that not everyone is in a position to support me but even $5 helps.  I'm not just running for me.  I'm running for all my friends I've met through CCFA who suffer with Crohn's disease.  Some of them have it so severe that it blows my mind what a positive attitude they have.  My friend Dani deals with more than we'll ever understand on a day to day basis, especially after recently having her little boy.  She has such a sweet and positive attitude and disposition.  She never complains and just keeps pushing through.  If only we could all be like that.  I find myself wanting to just throw a temper tantrum from time to time over the frustrations of Crohn's.  I have another friend Jessica that I went to college with who has dealt with so much over the past 10 years.  She doesn't complain either and just keeps doing everything she can to take care of her husband and adorable little boy.  These ladies are my heros and neither of them could finish a half marathon and so I'm doing it for all of us. 

Sunday, May 15, 2011

Jodie's Story

My Story
By:  Jodie DeLay

I was a lucky kid.  I was born into a fabulous, loving family; grew up in a tiny, idyllic town in Montana and I was rarely, almost never, sick.  I was pretty good at everything that I tried and I tried a lot of things. I was constantly burning the candle at both ends and had HUGE dreams.  I never really knew failure of any kind.  That’s kind of a bold statement, but I say it because I know now what a gift it was.  I wasn’t GREAT at everything by any means, but I never really struggled.  Even so, because I had great parenting, I learned to work really hard.  As they say, failing to prepare is preparing to fail…so I was always prepared.
I decided pretty early on that I was going to be a Supreme Court judge handing out justice on behalf of good people everywhere.  I was focused and disciplined and powered my way through college with that goal in mind even though somewhere around my sophomore year I was positive I did NOT want to be a lawyer.  There wasn’t really anything else that came to mind so I just kind of closed my mind to it and kept going.  I graduated in May of 1993.  I was completely, utterly lost.  For the first time in my life I really had no idea what was next.
I had some money from a scholarship that I received after my grades were turned in and I literally just lived from happy hour to happy hour, both struggling with the concept of “free time” and really enjoying it.  I started drinking pretty heavy.  On my 22nd birthday I was blessed to have many friends visit me to help celebrate and started the day early with a road trip to find a bar with “Juke Box Hero” on the playlist.  I ended the day completely hammered and living out the song, “Jose Cuervo”.  I kissed some cowboys, danced on the bar AND got in a fight.  And I woke up with a really cute acquaintance who I vaguely remembered crying with… I did not remember being intimate with him.  Even for all the drinking I’d been doing, I really had stayed more true to my values than that, until then.
Six weeks later I had to admit to myself something was wrong.  The pregnancy test was absolutely devastating to me.  My dad wanted to disown me, at least for a while.  He was so disappointed. I was so angry at him and so hurt at how he treated me when I told him the news.  My mom was sweet and supportive, but I was truly raw from the emotion and retreated.  It took me a LONG, LONG time to realize that my anger really was toward myself.  But that is another story entirely! 
On the day that I heard my baby’s heartbeat, my life changed, fundamentally, forever.  I fell madly in love with my child and knew beyond any shadow of a doubt that I would spend the rest of my days doing everything in my power to be a good mom.  My life suddenly had incredible purpose.  I got a job processing real estate loans, cleaned all the crap out of my fridge and started swimming again. I lived SO healthy.  I exercised, ate very nutritiously and slept, a lot. I felt great and advanced in my job, getting promoted to loan officer in a short time.  The day I was induced I got up and swam a mile before checking into the hospital.  I was in labor for two hours and gave birth to my beautiful daughter, Jacquelynn Michele.  My whole family was there and for the record, my dad was the most amazing grampa from the first instant she joined the world!  Her birth dad was not interested in participating and I decided that I’d rather parent myself than have someone around her who made her feel like a mistake.  She was most certainly not.  She was a blessing straight from God; my angel, my saving grace.
I was determined to give Jackie the best of everything and not to be a burden on anyone.  I took a better job, with full benefits, as a Real Estate Loan Officer for a local bank, got my own apartment and found a loving home daycare nearby.  I worked hard, built my portfolio and nursed during my lunch hour, pumping during breaks.  In the evening, I’d stay up late holding her and reading to her and singing to her and just watching her with awe. 
I had some pain with eating and bowel movements but figured it was just everything getting readjusted from the pregnancy.  I’m tall, and due to changing my partying ways and exercising had actually lost weight in my pregnancy. I’m one of those people who could have hid it the entire time – I never needed maternity clothes…she just fit around things.  I thought maybe this was why I felt all scrunched up all the time.  I started noticing blood with my stool, but chose to believe that it was from the hemorrhoids I’d developed in  part cause she was born SO fast – and I had some tearing and things, too. 
By the time Jackie was six months old, it was pretty painful to eat – and it was time consuming, too, so I just kind of quit doing it.  Bowel movements were very few and far between and I dreaded them with my entire being as they were excruciatingly painful.  The bowl was full of dark blood each time.  I was exhausted but determined that I could do it myself. I did not need help. I quit nursing as I just couldn’t keep up the volume of milk needed.  Jackie went straight to regular food and thrived.
Once a few more months passed, my mom was on my case – sure that I was anorexic.  Every time I ate I had such horrific pain that it doubled me over.  I went to some doctors to find out what was up and they tested me for things like worms; but generally dismissed it as postpartum depression. I must be depressed being a single mom after all!  This annoyed me tremendously and basically strengthened my resolve to take care of my daughter myself – NOBODY gets to label me!  When I think about how scared I would be as a mom if Jackie was so sick, it makes me really mad at myself for putting my mom through that time. She cared so much and I kind of pushed her away.
One day when Jackie was about 15 months old I was walking over some property with a developer who was interested in putting in a new subdivision.  It was an important meeting with terrific ramifications for my career.  All the sudden I could hear the commercial loan officer and the developer talking to me, asking if I was okay, but I couldn’t answer them or respond. I passed out right then and there.  This was the push come to shove moment when I realized I had to find out what was wrong. The bank insisted on it!
A general practitioner in town thought a good place to start would be a colonoscopy so he sent instructions to the hospital and I did the prep and showed up to have the tests.  The next day the GI office called. I wasn’t really even sure what a GI was at that point! I’d been healthy my whole life!  And it wasn’t like now when you jump on the internet to research something…I know that ages me, but it wasn’t!  I was exhausted and sick and trying to take care of my daughter, and frankly scared to know the truth so I was completely na├»ve when the lady on the phone said to come in because they had news for me.  It sounded grim so I said to her, just TELL me!!! And she did.  She said, “You have Crohn’s Disease.” I said what is that?  She said, “well I don’t really know – I’m just a temp.” I said well you have to give me something more than that! She said, well let me look it up… “it says here that it is debilitating and there is no cure.”
I was devastated.  Horrified.  I think she knew then that she had said way too much and she started mumbling all this crap to make me feel better and then trying to cover her butt so she wouldn’t get in trouble.  Anyway, at that point I did the research.  I learned as much about it as I could and knuckled down to get it under control.  It was a lot of medication and a lot of time getting better, but I managed. 
During this time I met my husband.  He was sweet and made me laugh.  He made me feel like a human again and he was wonderful to Jackie.  It felt good to have someone to talk to and be an adult with.  We dated for two years and got married when Jackie was 3.  He adopted her and we were pretty happy.  I will say that even before I married him, I knew he was an alcoholic.  I don’t like to admit this, but it has been part of my healing.  I let it go because I had gone through a time when I drank too much and I quit. Part of me just believed he would, too.  And also, I believe alcoholism is a disease.  I too had a disease.  He was helping me cope with mine, and I would in turn help him cope with his.
Once I had been in remission for about a year, we decided to have a baby together.  We became pregnant right away.  I was so excited.  At 10 weeks I had significant spotting and an ultrasound revealed that the fetus was lost.  I underwent a D&C and thought I would die from the sadness in my heart.  I didn’t think I would ever recover.  I was able to become pregnant again pretty quickly and I know now what an incredible blessing that was.  My sister told me later that she thought Dylan just needed a little more time…I like that.
Unfortunately, I started having Crohn’s symptoms again and a trip to the GI revealed that I was indeed out of remission.  I was devastated.  I was having to take hormones to keep the pregnancy viable as it was.  Within a few months the Crohn’s was raging.  I went to the doctor in November of 98 and was told that I needed to stop all activity if I was going to carry the baby to term.  I quit my job on the way home.
I was NOT going to lose this baby. It was months of extreme pain, lots of medicine I didn’t want to take, but no real options. I was terrified that I’d either lose my son, or he’d be born horribly disadvantaged because of me.  Financially, I had to find something to help with the bills and I was fortunate to get hired by an internet ad tracking company out of New York.  Weird, and random, I know. I consider it another amazing blessing.  After a couple weeks I was promoted to full-time and started receiving benefits.  I lay in bed and worked and it helped some of the stress.  Poor Jackie would cuddle with me and we’d do our best to play and read and have some happy times.
Dylan was born on February 12, 1999, almost 6 weeks early but healthy and with all his fingers and toes.  He was beautiful and such a perfect little angel.  Once again, I had been blessed immensely.  He had to be weaned off prednisone because of my meds and had a little jaundice, but his lungs were strong and when he looked in my eyes, I knew that he and I were going to be fine.
From the beginning poor Dylan had GI issues.  He threw up every single time he ate for a year.  Because of research I had done about nursing and its relationship to Crohn’s, I was adamant about nursing and my milk was the only thing that he could keep in enough to be able to grow so for a year, that was all he had. 
I continued to struggle.  I lost weight, lost strength, lost energy.  My husband turned to drinking.  Jackie grew up a lot.  She ended up taking care of Dylan and I quite a bit at the tender age of just 5 – 6 years old.  She would get my meds for me and make me tea.  We continued to spend a lot of time playing in bed – games, reading, telling stories.  Going to the park – impossible; even though it adjoined our back yard. 
When Jackie was at school and Dylan was sleeping, or often in the middle of the night, I’d work my internet job.  This is an important part of the story because I don’t think people always consider the toll that chronic illness takes on ALL aspects of a family.  Financially, we were devastated.  Though I had insurance, the company was based out of New York and I lived in Montana – everything was out of network.  I worked throughout my illness and we held things together all the way up until the divorce when ultimately it all collapsed around me.  It’s a horrible “side effect” of chronic disease!  And frankly, it did not help Scott in dealing with his alcoholism. All these things  - financial insecurity, my fears and physical pain, having two small children, not being able to CURE me OR to fix any of it OR to just get away and have a break once in a while, added up to way more than he could handle. So he drank the pain away.
My family helped how they could through this but they lived five hours away.  And once again my fierce independent streak reared its ugly head.  I didn’t want to admit that I couldn’t take care of my family, OR frankly that I had not made a good choice when it came to my marriage.  To be fair, I think Scott tried.  He made dinner, grocery shopped, helped with laundry and things.  He still could make me laugh.  I did love him.  I wanted it to work.  But ultimately, I let it go on too long.  I didn’t reach out to my family and I think in retrospect that hurt them, too.  They needed to be able to help and I didn’t really allow it much.  Shutting them out made it harder for everyone.
By the time Dylan was a year I was so sick that I started obstructing on a fairly regular basis.  Dylan was weaned pretty much overnight.  I went to the hospital, he went on regular food.  Fortunately, and here’s another blessing, he finally took to it – just when it really was a must.  I should explain that I have never had diarrhea with my Crohn’s.  I go the opposite way – my bowels don’t spasm, they stop. Nothing goes through – they just swell shut.  I’ve had dozens of obstructions.  I go to ER, they put the NG tube up my nose and down my throat and basically rotoroot the blockage, then its lots of meds, IV nutrition…it was a vicious cycle for quite a while.  Around Christmas that year I noticed this large lump on my abdomen, it was like a baseball.  It was an abscess.  That took a couple weeks to drain. That was followed by a rectal fistula.  On Dylan’s birthday I was let out of the hospital to celebrate with him.  I remember all the family being there and how I looked forward to his party.  And then how heartbroken I was that my pain was horrific, I was too weak to lift him up.  I was back in the hospital with another abscess the next day.  After several days I was sent home, again.
Somewhere in this time I got a call from Jackie’s best friend’s mom.  She said, I don’t know how to ask you this, but Jackie’s been talking to Brooke and she’s pretty upset….Are you going to die?  It was horrible.  I had to sit down with Jackie and look her in the eye and tell her that I and the doctors were doing EVERYTHING we could to get me better. I told her we just had to pray with all our hearts. 
She was at school one day shortly thereafter and I was home with Dylan by myself.  Scott had gone to work just down the road (another blessing as he often worked out of town). I started having horrible, horrible pain.  I was blacking out.  I couldn’t find the phone.  I was worried about keeping Dylan safe.  He was just crying and crying.  I couldn’t stand up or crawl or move.  I just kept trying to calm him.  I had been working so had a piece of paper and a pen and started writing a “goodbye, I love you” letter to my kids. Then the phone rang and it helped Dylan to find it.  He brought it to me and it was my mom.  She was calling from a meeting in Helena to check on me.  THANK GOD, what a tremendous blessing!  I’m sure I scared her half to death.  She got a hold of Scott who had me in the car on the way to the hospital within minutes.  My mom met us shortly later – man she had to have flown to get there so fast.  I remember it hurting so badly and my mom trying to get someone to help me.  They had me drink some dye and were waiting for it to get down where they could see it and I was hurting so badly – the morphine didn’t begin to cut it.  Finally someone realized the dye wasn’t going through because it was spilling all over my abdomen, I had perforated.
So, it was emergency surgery.  I remember my doctor telling me that I may wake up with a bag.  I remember telling him that he could cut off my arm as long as it stopped the pain and kept me alive.  I ended up with two resections at the same time totaling about 3 ft.  I had another surgery a couple weeks later to repair a rectal fistula.  After that it was about a year before I felt human.  I went through depression and actually got on meds for it which I highly recommend.  It gave me the boost I needed to get through the worst and I was able to get off it quickly once I had my footing.  I saw naturopathic doctors and put together a whole package of nutrition, massage, homeopathic meds and traditional meds, along with exercise and finally Remicade infusions which ultimately led me to remission.
Since then, I have been grateful for every good day. I have had no more major flairs, though like so many I experience significant fatigue and have had many times when I get minor issues.  I have arthritis like pain in my knuckles, elbows and knees especially.  I got shingles. I had a growth on my eye that was Crohn’s related. I continue to get Remicade infusions every eight weeks and I’m so grateful.  I almost always feel myself breaking down near the end of the time and know that without it my quality of life would not be so good. I run because it keeps me regular and it frees my spirit. It’s my time. I run because I can.
I will stop here because I know that you are all probably exhausted from reading it!  You heard a lot of my story from this point on the motivation recording or you can read it through my blog.  I didn’t start doing Team Challenge or getting involved with CCFA for me.  I did it for my brother when he became ill and I’ll continue to do it for him and for my son and for all the people I’ve met on the journey.  My illness was very difficult for a very long time, but it gave me strength, taught me a lot of lessons and I believe paved the way for the very, very strong relationship that I have with both my kids.  It helped prepare me for other battles, including my eventual divorce, the pending foreclosure of my home and worst of all the diagnosis of my son with the same disease.  I still dream BIG, but it helped me reevaluate my goals, base them on things that give purpose to my life and to appreciate so much more than I ever did before.  I’m still a lucky kid…okay, well maybe not a kid!  But honestly, I’m way more a kid at heart than I was when I was constantly burning the candle at both ends doing everything I could just do to say I did!  I wouldn’t “give back” my Crohn’s if I could. It’s part of my journey. 

Saturday, May 14, 2011

Getting ready for the GARAGE SALE...

Today I've been preparing for the garage sale that I will have on Saturday the 21st. Making trips to Midland to pick up donations. It's going to be a great day! I'm sending Matt off so he doesn't have a panic attack the day of the sale. Just the thought of me selling his things makes his eye start twitching. I'm worried he'll pass out from the strain.

Wednesday, May 11, 2011

Krystal's entire story...

Yesterday I posted the video that Krystal's mom created. Today I'd like to post her entire story. This is her story that she emailed to me yesterday. Krystal has suffered with this disease her entire life.

My name is Krystal Carbone and I’m a crohnie and this is my story.  



Mine is lifelong and I’m almost 29 (May 19th). I’m thankful that this year on my birthday I will not be in the hospital or in recovery. Get comfy because this will take some time.
First, although I have battled with this disease for a long time, I am new to sharing my story.

Ok here we go.

As a baby I had severe colic and tum problems that would come and go. I grew up in poverty and product of a broken family; I suppressed many emotions and would worry about adult matters. I was often sick with a cold, flu, or strep throat. By age 10 I had already seen many doctors and had several tests, all which were inconclusive. At age 11 a gastrologist discovered I had multiple ulcers in my large intestines and diagnosed me with Ulcerative Colitis, the same disease my dad has. I was introduced to Prednisone and continued to have more tests done. What kind of tests? Many, many blood tests, along with a Fecal Occult blood test (stool sample), colonoscopy, flexible sigmoidoscopy, barium enema, small bowel imaging, and CT scan. My ulcers eventually healed and I came to know what is called remission. My health being a roller coaster of peaks and valleys, or flare ups and remission. During remission I lived a fairly normal life, loved dancing, playing sports, being with friends, sunshine, laughter and most of all loved my family.

It was during High School that my symptoms of diarrhea, abdominal pain & cramping, bloody stool, ulcerations, loss of appetite (seemed like it was better not to eat at all), fatigue, and anemia increased, interfering more and more with my life. I quit playing sports, less social, became depressed and angry that I was forced to live my life this way, just did not seem fair. Felt alone, like no one understood, I would tell people “I’m just sick” and they would reply, “Why are you sick all the time?” I couldn’t possibly tell them I had a disease, I could barely say the words. My Senior year of high school was the most challenging, I spent most of the year in pain, I experienced ulcerations it seemed everywhere: my eye, my mouth (one doctor told my parents I had herpes, how embarrassing & not true!), my large intestines and would later find out also in my small intestines, and there was so much blood coming from my bottom. I kept changing Doctors as it seemed like no one could help me get this under control or knew how to fix this. One doctor I had during this time, kept giving me prescriptions and at one point I was taking 15 pills every day! On top of the symptoms from the disease, I was also experiencing many side effects and literally felt like I was going crazy. Felt like I was going to the pharmacy, to the hospital for blood work, to the doctor’s office or to urgent care regularly. I remember this one day in particular, I sat in my room holding my head and screaming cause it hurt so bad and with tears streaming down my face, I dropped to my knees and asked God to please end my suffering and take my life ‘cause I could not deal no more. My stepmom took me E.R. and I was hospitalized and taken off all meds and once again switched doctors and gained a new gastrologist. I was put on Imuran to help try to keep me in remission and put back on prednisone again. Upon follow up it seems the problems persist no matter what is done, the gastrologist ups the prednisone. I’m on prednisone for probably several months, my face is puffy and I don’t feel like I know myself anymore, my emotions are out of my control. I’m 18 and just barely graduate from High School. With my health being a concern I make plans to go to a local community college and continue living at home so my parents can help me take care of myself, so much for independent woman. That was the worst summer ever, I was not allowed to be in direct sunlight, I stayed at home alone ‘cause I was having to use the bathroom so much and in so much pain I didn’t want to be around any of my friends. My diet consisted of jello, popsicles, and occasionally a soup broth or some very plain mashed potatoes on a good day.

It was September 2000 and I was going in for a follow up and to discuss now what because nothing seemed to be helping and I was sick of the prednisone and still depressed. I still remember the look on the gastrologist’s face as he said to me, “I’ve done all I can for you and think you may need to have surgery. You’re on more prednisone than a full grown man can handle and showing no signs of improvement.” I asked him how soon I should go talk to someone about surgery and he replied, “Are you able to go now?” I felt scared and confused; I still didn’t even really understand what was wrong with me. It all happened so quick, next thing I know the surgeon is talking about risks with my dad and me. I’m told they are going to remove my entire large intestines and create a stoma, where my waste will come out. The scar will only be about 6 inches and eventually it can be reversed and I can essentially be hooked back up like normal. I wake up from surgery and feel like I have been hit by a train, perhaps twice. I look down at my stomach at the row of staples holding me together, it stretches almost the whole length of my stomach; so much for 6 inches and then I see the ileostomy bag attached to me…I began to cry, this is not how a 18 year old is supposed to look. Who could possibly love and understand me this way? My boyfriend of 4 ½ years had broken up with me just prior to being admitted into the hospital and because of the time frame of recovery from surgery I had to postpone going to college, had been let go from my job because they could no longer hold my spot, and had to reschedule being baptized (at some point during all this pain, I had a come to Jesus moment). The support and love from my family helped me deal with the changes. I remember my stepmom made my two younger sisters scrub outfits and dressed them up and they came and took care of me. J  Having the same disease as my dad was hard for him, seeing me go through all of this, but it also bonded us.

I had just got home from the hospital and the phone rang, it was my gastrologist and he tells me they biopsied my large intestines and he has good and bad news: good news is my entire large intestines wasn’t inflamed, the bad news is I had the wrong surgery, they shouldn’t have removed my entire large intestines and this also means I have Crohn’s, not colitis. This hit me like a ton of bricks, this also meant there was no reversing this surgery, this was me for the rest of my life. I was so upset; I wanted to sue everyone for ruining my life but was told I couldn’t because there was no way anybody could have known until the biopsy. Looking towards the positive, I can now eat whatever I want and I did not waste any time, starting with fettuccine alfredo with chicken! Yum.   

I work with a RN Nurse who helps me adjust to having and taking care of a stoma. I seemed to have an unusually shaped stoma and finding the ideal bag and system is quite the process and is frustrating, one bag after another either doesn’t work cause of the size, I have leaks, or a few times the bag altogether just pulled away from my skin, leaving a unpleasant mess. Then not even two months later, I have gut retching pain just behind my stoma and am rushed back to the hospital, it seems a knot developed in my intestines, making processing all the delicious food I was eating backed up and causing pain. Surgery was done and back home to recover. I remained on Imuran but am no longer on prednisone. I started over: I was baptized, re-enrolled in college, took a job working for my grandma, and made new friends. I kept my ileostomy and disease to myself the best that I could and besides the struggles with having a bag, I felt healthy but I wasn’t happy. I turned to drinking and partying and other forms of self-destruction. Just as seasons changed so did my life: changed majors multiple times, in & out of relationships, changed jobs and remained in remission. I still continued with my medication and regular trips to the hospital for blood work.

Years went by. Still in college, had moved back in with my dad after another bad break up, working two jobs, and began working on improving my attitude and stopping the habits of self-destruction. From that break up, I realized I needed to really get in touch with myself and figure out who I am and what I am about. At 26, I re-unite with someone I had met three years ago at a club with a mutual friend and before long I was helping her out of her bad situation and we both moved into my mom’s. I was so excited about this new chapter in my life, I moved all my stuff in one day all by myself and that night we were cuddling and all of a sudden I felt a feeling I had not felt in a very long time…that feeling you get when you have seconds to get to the bathroom. I rushed into the bathroom just in time, and gush! Let’s recap I’m 26 and nothing has come out of my rectum since I was 18. It kept coming; I looked in the toilet to see blood, my blood, and tons of it! I went into shock, pounding on the wall hoping my girlfriend would hear me; thankfully she rushed in and proceeded to get my mom. Within the moments that it took for my mom to come downstairs, I had passed out, fell off the toilet, and hit my head on the shower door. Lying in my own blood, my mom picked me up as I regained consciousness. My mom yells, “Call 911 now!” I pass out again in my mom’s arms, still bleeding. My mom gets me upstairs (thankful that my mom is a strong woman both physically & mentally). I come back and I’m sitting on the upstairs toilet, my blood is clotting but still coming out. It’s getting to be painful, feels as though all the blood in me is being drained out of me within minutes. My naturally tan skin is white as a ghost, I feel so cold, I begin to convulse and pass out again, and this time my stepdad catches me before I hit anything. The ambulance has shown up, I open my eyes and remember thinking I don’t have health insurance, I can’t afford this but upon passing out once again, my rights are over-ruled as I will be dead soon if I don’t get to a hospital now. I open my eyes inside the ambulance, I’m weak and despite the layers of blankets I’m still shaking, my girlfriend is by my side, holding my hand with tears in her eyes, repeats over and over keep your eyes open, keep looking at me. She was afraid if my eyes closed that they wouldn’t open again. I remember thinking I can’t die, I’m too young, I haven’t really done anything yet plus I don’t know for sure if bi-sexual woman get to go to heaven. This was in April 2009. I was taken to ICU and given several blood transfusions and put on steroids. I was so weak and in so much pain, I refused to go through the usual line up of tests. I was told a long time ago that with still having an anus, I was high risk for colon cancer, I was never told at some point it might erupt and I may bleed to death. They couldn’t figure it out so I was closely monitored and once I seemed healthy enough and no longer bleeding, I was released, it was Mother’s Day. I spent the rest of the day with my mom, who said that having me alive was the best mother’s day gift ever.

Not even 24hours later, early in the morning I was awaken from sleep by a familiar feeling, it was back but this time I knew what to do. I ran to my mom’s door, yelling “we need to go back; I’m bleeding, hurry I don’t want to die!” I have never seen my mom get ready so quick nor drive so fast, yet it seemed like the longest care ride of my life. Wrapped up in towels to absorb the blood, I fought to remain conscious. I walked into the hospital and refused to be taken lightly; explaining I was just here and basically walking myself back to one of the rooms and telling them how this goes. I get warm blankets, and I.V. and start a blood transfusion and please find my surgeon. Before long I was all hooked up again and talking with my surgeon, how’s that for efficient! We agreed that surgery to remove my rectum and anus was necessary and it was schedule for the next day in the afternoon. I always found it ironic that I’m severely bleeding yet nurses kept coming in and taking my blood. Then at around 1am, I went to the bathroom to realize the bleeding was becoming out of control, this time I was burning up, sweating and convulsing. I was helped back in bed and a team of nurses rushed to stabilize me as my surgeon was paged, we needed to do the surgery now, there was no waiting any longer. I remember holding a male nurses hand, I was so scared and asked him, “please help me, and don’t let me die ok.” Another blood transfusion was started, I was hooked up on oxygen and other machines and was being prepped for surgery now. My girlfriend, who I had only been seeing for about 3 months prior to all of this, never once left my side. I asked her to call all my parents so I could tell them I loved them and say goodbye, just in case. It seemed like forever for my surgeon to show. My family says it seemed like forever as they waited together in the waiting room, apparently there was some minor complications making the surgery go twice as long. After surgery I was no longer in ICU but did end up having another blood transfusion and nurses continued to poke me with needles. Oh and I had a pick line in my neck just as I had with my surgery when I was 18. I must say having staples pulled out of your ass has to be one of the most painful things I have ever endured! I was in the hospital for a total of 14 days after surgery and released on May 19th, on my birthday.

Being the perseverant and determined young woman I have become, I once again started over. My girlfriend and I moved out and got our own place, took a new job as a social worker, and eventually we adopted two kittens full of personality. Almost a year later I was still experiencing draining from my rectum and something was wrong. I went back to my surgeon and was surprised by his reaction, “hmm, that’s odd. I didn’t see that one coming”, did not reassure me what so ever. He ordered test and freaked me out by telling me of the same test that recently went wrong and permanently damaged a young woman. I decided to continue packing my bottom at home and not do the test. Can you blame me? Besides I had already been through so many evasive tests in my life time, really when would it end.? After seeking advice from my support team, a.k.a. family & friends, I decided to try a new primary care doctor who referred me to a surgeon who specialized in colon & rectum surgery and came highly recommended. She took one look and said, “I bet its fistulas and you have two choices, have them removed or not.” This meant another surgery. I had to go home and think about it. I realized I was miserable and could not live the rest of my life with drainage from my rear and the cost of gauze already had been costly, I would have to get a 2nd job to support my gauze habit.

This surgery was supposed to be simple, in and out in less than half of a day and recovery about two months or so. Surgery was complicated due to an absinth in between the two fistulas; all of it had to be removed. I was still able to go home the same day. Being determined that this surgery was not going to set me back and I was not going to start over, I only took 3 days off work. I went back and broke down big time right in front of my boss and was sent home. I was being too hard on myself and everyone knew it but me.

I lightened my work load but still kept pressing forward. A couple months went by and I went in for my follow up, no progress towards healing had been made. Now this surgeon was surprised and unsure of what to do. (By the way, from this surgery it was left open so that it could heal on its own from the inside out, to prevent another fistula growing behind the new tissue.) I was referred to a wound care specialist, it’s now October 2010. I’m hooked up to a wound vac machine and go into wound care every Monday, Wednesday, and Friday to have it changed, which is an unpleasant, painful process, literally a pain in the ass. I’m also seeing my primary care doctor who is managing my pain management contract, since I’m always in pain since removing the fistulas. Thankfully my job is sympathetic and works with me through all my appointments. I’m not the only one inconvenienced by the appointments, I also have to bring someone with me to help the nurse hold my buns a part (a big shout out to my younger sister, my mom, and my girlfriend for stepping up and helping). In November, around Thanksgiving I get a really bad flu. I get a break from the wound vac since I’m not able to go in for my appointment and also spend Thanksgiving alone because I was really contagious. Once I well again, wound vac is put back on. In December 2010, I get an infection which is common and was lucky to have gone that long without one. I’m put on antibiotics which don’t seem to be helping. I take a gauze sample of the neon green stuff that is coming from my bottom to the wound care doctor and he realizes I’m on the wrong antibiotics; I finish out December on antibiotics and pain pills but the vac is working my tissue is building and the giant hole is getting smaller. By the end of January the wound vac has done all it can for me and we switch to packing it with this protein silver. I should also mention my dedicated and loving girlfriend was my at home nurse and learned how to do all this detailed packing. I’m also taking several supplements, on a high protein diet, and when I’m wasn’t at work I was at home laying on my tummy waiting to heal. February 2011, I come to a standstill; my tissue isn’t healing any longer despite doing everything I can think of with the exception of still working my desk job. I take a short leave of absence and healing starts again. I return to work officially part time, at this point I’ve lost interest in my program at work that isn’t getting the support it needs anyway and am focused solely on my health concerns. The wound care doctor insists I need to have an extended leave of absence, desperate to be healed I do as I’m told and requested to take a month off. It was approved and not even a week into it, I was called into work and let go due to performance. They needed the program to continue. It hurt knowing I was once again going to have to start over with a new job and I had tried so hard to not lose this one. I pushed back the tears and focused on my health; day in and day out I laid on my tum, patiently waiting for healing. It’s now March 2011 and I’m severally depressed and questioning my life, wondering if I had cheated death and now I was to suffer for the rest of my life. While lying around, I came across a video on YouTube for team challenge and watched as all of these courageous and energetic people crossed the finished line and remember one crohnie saying, “If I can do it you can do it.” I laughed and asked my mom what she thought of me training to run a half marathon once I was healed, she didn’t think it was a good idea but soon realized I need this challenge. I signed up while still healing but I had a new found hope and sure enough two weeks later my tissue was completely healed. I was cautioned that I had to be careful with my new tissue and it could take up to a month for it to fully be healed, I learned the hard way after tearing it a little and having to go back to nothing but rest. By the beginning of April I was walking every day and felt optimistic about the future and excited to take on this challenge. It’s hard to explain but my outlook on life is forever changed, what is important has changed, and I’m thankful for my family and everyone that played a part in helping me get to this point. It’s time, time for me to share my story and to help others who can relate to my journey. Just in sharing this with you now, I have cried multiple times because it is hard to relive the things I have been through and have for so long tried to bury. I have also smiled because I know I’m a strong and a survivor. This June I will be embracing life, have raised money to help so many others, and helped myself along the way. I can’t help but wonder what will happen next, if in another 8 years my life will again be at risk but I cannot live in this fear and must do what I can to cherish my life now; starting by going to Hawaii and finishing a half marathon! I’m also doing this for my dad who still suffers from colitis and will never allow himself to go through any surgery after witnessing all that I have endured; for those like my father, we need a cure because remission is no longer enough.

 

Thank you Krystal for sharing your story.

Tuesday, May 10, 2011

This is what it is like for Krystal...

I asked my fellow team members to share their personal stories with me so I could share them with you.  The first story I'd like to share is Krystal's story.  Settle in and get a box of Kleenex. To see the video that Krystal's mom made click here. Thank you Krystal for your courage. I can't wait to meet you in Kona!

The Ys

Yesterday morning I awoke to the thought: I only have 6 weeks left! Then my loving husband said, "Honey, you realize that you only have 6 weeks left, right?" YES! I know!

Thoughts running through my mind all day yesterday: How am I going to do this? The farthest I've gone is 4.5 miles. I've only raised like $1400 total so far. ONLY 6 WEEKS LEFT!!! AHHHHHH!

Then Monday evening as I was packing up my desk (1 1/2 hours after I was supposed to leave work), I received an email from someone that has read my blog. She requested that I post more educational information on Crohn's and colitis. That I share more personal stories. I origanially started this blog as a way to personally track my progress, so the thought of posting other people's stories hadn't occurred to me.

Then as I was driving home I called in for the Team Challenge weekly conference call. The topic: MOTIVATION. The discussion was our team mentors sharing their personal stories, how they or a loved one was diagnosed, why they started participating with the program and how CCFA is a great organization. I cried for about an hour!

Then last night after I get home I logged on to http://www.ccfa.org/ and found a page where patients have posted their stories. I'd like to share that link with you: http://www.ccfacommunity.org/ShareStories.aspx?Page=1#top
Please check it out if you want more information. I've sent out an email to my team members requesting permission to share their stories with all of you. Hopefully I'll be able to do that over my final 6 weeks.

I know my first couple of posts gave an overview of my story. Maybe later, if I feel up to it, I'll give you the ENTIRE story. The details are the hard part.

If you are looking for a reason to donate then imagine a life where hospitalization for long periods of time is not unusual, I was in the hospital for 21 days and my mentors 9 year old for over 40 days. A life where you always have to be close to a restroom - you plan any possible activities by the proximity to a bathroom. I did. Even after surgury, I'm "disease free" but I don't sleep more than about 2 hours on average at a time. I'm in the bathroom at least 3-4 times a night, minimum. Could be more - just depends on what I eat.

We need to find a cure and the Crohn's and Colitis Foundation of America is working diligently to do that.

Sunday, May 8, 2011

The morning after...

Last night was a BLAST! I hope everyone that attended had a great time. I know I did. The final count, dollar wise, is not in yet. I'll have to wait to get the invoice from the hotel, but it looks like the event generated between $400 - $500. WooHoo!!!!! 

I have to thank my friends and co-workers for the success of the "Determined to Dance" party. I'm overwhelmed by your support and generosity. I am so grateful for everything! You guys are the BEST!

Saturday, May 7, 2011

Today is the day!!!!

So, it's Saturday. I got to sleep in! Yay! Then I remembered, today is the "Determined to Dance!" event. I've got to get my booty out of bed and get moving. So I went to the park in Andrews, "Lake"side park, and did a couple of miles (I know Saturday is supposed to be my long run day, but I've got things to do!). Now it's shower, lunch and out the door. I'm going to pick up the centerpieces (also being given away as door prizes tonight) and check out the ballroom at the Hilton. Just talked to my co-worker who found our DJ,
RUBEN OLIVAS (www.arstudioproductions.webs.com), they are ready to go!  So, I've got to get off of this computer and get busy! Who's ready for some rump shakin'?

Friday, May 6, 2011

I miss home

That's it, I miss home...

Oh and Vanessa Claybrooke is generously donating 20% of her May sales to CCFA! So go to www.mysweetbags.com, look at the catalog and then buy something! Let her know that I sent you! And if you want to have a party, I'm in!!!

Wednesday, May 4, 2011

Inspiration vs perspiration

My husband suggested that I write about where I get inspiration from. As soon as he said it, I knew it was a great idea! Also a difficult one to put into words, especially the written word. I started thinking about the differences between motivation and inspiration. What inspires me as apposed to what motivates me. It has admittedly taken some time to wrap my brain around the differences and hopefully be able to express it in a way that is easily understandable.

This past weekend I went home for a visit. Home is New Orleans, LA. While there I stayed with friends in the city, went to the Jazz and Heritage Festival, visited the French Quarter, and relaxed with family. When I trained, I ran down
Magazine St.
and
St. Charles Ave.
I drove through Mid-City. I just wanted to absorb as much of the city as possible while I was home. That city inspires me! The people there inspire me! It’s everything: the food, the music, the attitude!

Then I started thinking about everyone I’ve met since moving here.  I moved to West Texas two years ago- actually, two years ago on the weekend before Memorial Day. The people I’ve met since moving to West Texas are probably some of the nicest people I’ve ever met. Everything I’ve witnessed here has genuinely inspired me. Everyone here pulls together when there’s trouble. West Texans are generous and they give new meaning to the word community. And the sunsets are awe inspiring.

When I think about this challenge and my commitment to the team, I think about everyone else that has done so much for me in my life. How can I return the favor? I feel so blessed that I need to give back. I honestly feel the NEED to do something for others that are experiencing what I went through eleven years ago. I want to say to everyone out there living with either of these diseases or any form of  IBD, you can have a great life.  If you have any questions about Crohn’s or colitis you can visit the foundation’s website at www.ccfa.org. If you have questions for me or would like to make a donation email me at rkingham@mrt.com.