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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.

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