Hi everyone, I'm Brittany and this is my story....
My brother and I were raised by my father who suffers from severe hemophilia. It is a disorder in which one of the many factors needed to clot the blood is missing. His less than 1% clotting ability left him with debilitating arthritis, and yet he was the best father anyone could ask for. I grew up watching him self-infuse 'replacement' factor through an IV on a regular basis (the only treatment available). At the age of 12, I was tested to see my status as a carrier of hemophilia. The results came back that not only was I a carrier but that my own clotting ability was diminished as a result of the severity of the gene I carried, and was only 18%. I was also told that if I had sons they would have a 50/50 chance of also having severe hemophilia. I mistakenly thought it would be the biggest hurdle I'd have to overcome.....
I can vividly remember the first day of my first flare...I was 17, living with my high school sweetheart and had had a few drinks for the first time. The next day I woke up with the worst hangover and it just never went away. Over the next 8 months I went to the doctor numerous times (I was going weekly, towards the end) and was diagnosed with everything from Gastritis to IBD, Bulimia and even Giardia. My doctor would press on my stomach and make a new diagnosis and prescribe a new regimen, but nothing helped. Then one day a friend of mine suggested that my symptoms were almost identical to the symptoms he suffered with his Crohn's. I went to the doctor and told him I thought I knew what it was: Crohn's disease. It was as if he was not willing to take any suggestions and quickly dismissed it, saying that there was no way I had Crohn's. He even suggested that it was all in my head...After suffering for 7 months, losing 60 lbs, and the doctor still not taking me seriously, I decided it was time for a second opinion. I went to see an AMAZING gastroenterologist who immediately began running tests. I had an upper endoscopy, colonoscopy, barium x-rays, etc. After a month I was indeed diagnosed with severe Crohn's and put on prednisone and pentasa. It was AWESOME. Within 4 days my symptoms had subsided and I felt great for the first time in almost a year.
By the time I was diagnosed, I had married my high school sweetheart and we had assumed the roles of patient/caregiver. It was a big change when I was finally able to start doing things for myself again and that is when our relationship began to deteriorate. Over the next year I remained on pentasa and prednisone, gaining over 100 lbs and planting the seed for the emotional abuse that would be the root of our eventual divorce. I spent the next few years battling mild flares, but managed to get back to my normal weight, work and start a new relationship. When I was 23, I began what I thought was a flare, but it was different than all the others. I was constantly vomiting and losing weight rapidly. I was uninsured so it took me a little while to finally go to the doctor, and when I did I found out that I was not having a flare, I was having morning sickness...I was pregnant...with twins.
When I reached my second trimester, I was in complete remission for the first time in years and was on top of the world. I went in for an ultrasound to determine the sex of the babies and was brought back to reality when I learned that I would be having fraternal sons, and that one or both of them would probably have severe hemophilia. We started making preparations for the birth, and decided to deliver as if they were both affected, just in case. At 35 weeks I delivered them naturally, three hours apart. Their cord blood was tested and showed one with 100% clotting ability and the other with less than 1% clotting ability, a severe hemophiliac. And then my journey really began...
When my boys were 4 months old, their father and I went out to dinner for our anniversary and (like an idiot) I had 2 glasses of wine and just like before, woke up the next day with a permanent hangover. I spent the next 10 months struggling with a bad flare, taking care of two babies with little to no help from their father, and going to the bathroom 30+ times a day. I was just trying to make it through each day and not realizing the extent of what was happening to my body. My parents were worried I was going to die and finally convinced me to go to the doctor. They reassured me that whatever happened they would take care of my boys. I had to finally take care of myself again. I showed up at the doctor's office expecting to be put on meds again and sent on my way. They weighed me and I was shocked to see 104 lbs on my 5'10'' frame (I usually have a good bit of meat on my bones). My doctor (who practices out of the hospital) quickly told me I was not going anywhere and admitted me right away.
I started my hospital stay with numerous tests and procedures and was put on TPN/Lipids. A few weeks into my stay, I had a colonoscopy and later that evening I began hemorrhaging...bad...I was literally pouring blood and had to receive my first ever dose of factor replacement and two blood transfusions. My colonoscopy revealed that my colon was gone beyond the point of return and the only option I had was to have a full colectomy with an ileostomy. It took a little while for me to wrap my head around that. I had never thought that would be my path...it literally had NEVER crossed my mind, but I was just ready to be better and decided to go ahead with the operation. I was on IV factor replacement for 10 days while I healed and have been in remission ever since. It was the best decision I have ever made. My boys were young enough that they will not ever know me as that sick, frail woman. I have since separated from their father and I am proud to say I am single-handedly making it happen for my boys. They are 2 yrs old now and doing great. My hemophiliac son has gotten a port and I do his factor infusions myself at home, 4 times a week. They truly are the light of my life.
It took me a long time to get where I am today, but I wouldn't trade it for anything (except maybe a healthy, fully functioning colon......jk). I am taking life by the horns and LIVING IT.
Skin health means something very important if you have an ostomy. That is because the state of the skin around your stoma may affect your quality of life. Find out how and why here.