the infertility rollercoaster

Since opening up about my roller coaster ride that is IVF I’ve had many people tell me how brave it is to share my story, but also that they are not super familiar with what the procces of IVF really is. Our journey with infertility started years ago. Because of the severity of my crohns disease I hadn’t gotten a period for over 5 years. Without ovulating and menstruating, you obviously cannot become pregnant. Our journey with infertility became very closely connected to our journey with crohns. Those who know me know that kids are my passion and I have wanted a large family my entire life. Believe it or not, working with 12 infants everyday only made this ache for kids grow larger. Upon being diagnosed with a genetic chronic disease like crohns, and being so sick that I almost died, I began an internal struggle that was, and still is, hard for me to cope with. How could I possibly think about having children if there is any chance that I could pass this horrid condition on to my baby. For a long time I decided I wouldn’t be able to do it, and this realization that my dreams were shattering caused me endless tears. River and I would eventually go through rigorous genetic testing and counseling before making the decision to go through with IVF. The first step to this whole process was first and foremost to get me healthy. I knew in the condition I was in my body would never allow itself to conceive, or carry a child. After failing countless medications and surgical procedures in September 2014 I was told that the only option I had left for my crohns was a surgery called a total proctocolectomy. In the crohns world this is the surgery of all surgeries and the decision to go through with it was not a hard one because for me, it was literally life or death. During the proctocolectomy I had 14 (additional from my small bowel resection in 2012) inches removed from my small intestine, my entire colon, my rectum, and my anus removed and was left with a permanent ileostomy bag. My world class surgeon told me that I had the worst colon and rectum he had ever seen. Upon getting this surgery my body responded SO well even my doctors couldn’t believe it. Aside from the absolutely horrific recovery my body was so happy to be rid of the sick parts. When River and I made the decision to go through with this surgery we realized we were cutting our fertility rates by 80%. Once you are able to comprehend just how aggressive my surgery was it is easy to understand why we are in the position we are in today. When you remove such a large part of your internal organs your body develops scar tissue to fill the massive gaps left behind. In my case, my uterus tilted when my colon was removed and scar tissue began growing near my tubes, making it virtually impossible for me to conceive naturally. Of course, at the time, this wasn’t something we knew and we spent a year and a half trying for something that would ultimately never happen.

            Once we settled in Cleveland and my body was finally at a place where I knew I would be able to give a baby a healthy home, we began investigating our fertility options. I also have to take a minute to brag about my company, Hyland software. A typical round of IVF costs around $12,000. My amazing company pays for fertility treatments up to a certain limit, and we have paid $0 to this point. How AMAZING is it that they are giving me this opportunity? Sure makes me work a little harder at the office…

            The beginning consultations to see if we were even candidates for IVF were pretty strenuous and involved lots of tests, including an HSG to check if my tubes were open, genetic testing for river and myself, as well as lots and lots of paperwork. The paperwork before we even started the actual IVF cycle really discouraged me and knocked me back down to reality. Having to sit in an office with a lawyer and sign documents saying that if IVF resulted in twins we would have to terminate a pregnancy and signing a notarized document saying what would legally happen to our embryos if a.) one or both of us died or b.) we got divorced was overwhelming to say the very least, and this was before all the insane hormone treatments…

Next time, the IVF process.

Hugs,  C

infertility...warrior?

I am not a victim to my crohns disease. I am not embarrassed about my disease and what comes with it. I choose to face everyday head on and look at the hand ive been dealt as a blessing in disguise rather than a death sentence. I am not a victim.

Crohns disease is most commonly diagnosed in young adults, age 18-24. This also happens to be one of the most important and difficult times in ones life. It is, or was for me, when I was learning about self-confidence, about respect, and about who I was. From the start, I fell right into the statistic. I was diagnosed shortly after my 18^th birthday on the night before I was leaving for college. Although I was 18 when I first heard the words “crohns disease”, I was sick for many years before I decided to seek answers. Being different in high school is the one thing I didn’t want to be, but my sickness forced me to learn things about myself and change into the strong independent person I am today. Blessing. When I was 16 all I cared about was what I was wearing to school the next day, who was hosting Saturday nights party, and how I could sneak home after curfew. Having to change plans because I couldn’t leave my bathroom was not in my agenda, but it became my reality. I knew on the day I received that phone call that I had a choice to make. Be a victim, or be a warrior.

I like to think of myself as a positive person when it comes to most, if not all aspects of my life. Yes, sometimes I am pessimistic about the Cleveland browns superbowl hopes, but lets face is, who isn’t? On the other hand, when it came to my disease I never allowed myself to be defeated…or at least until recently.

Since my surgery in September 2014 that left me with a permanent ileostomy, I have achieved medical remission from crohns disease. For the first time in the 8 years since I was diagnosed I am healthy. I often get emotional when I am doing something as simple as gardening, going on a roadtrip, or as adventurous as hiking the hills of California because these are all things I was not able to do 2 short years ago. I do not take anything for granted anymore. Nothing. I know that everything I am able to accomplish in my day to day life is a gift, because I remember very clearly a time when I would not have been able to do it. This healthy version of myself has so many plans and dreams for the future, including the one thing I have wanted more than anything; a family.

When it comes to my crohns I have always been comfortable, which is strange considering that crohns deals with intestines, and poop, and things one generally would not talk about. You could ask me literally ANYTHING about my crohns and I would get so excited and tell you everything I know. When it comes to infertility I am the opposite, and I don’t know why. Even writing the words down pains me. I suffer from infertility. Because of all the trauma that my body has endured due to my surgeries and medications from crohns disease, my ability to do the one thing I feel like my body was made for has been compromised. When it comes to infertility I feel more like a victim than a warrior because I cant understand why this happened to me… To help me step out of this negative stigma I associate myself with, I am choosing to share my journey. For the past few months, my husband River and I have started the process of IVF, or in-vitro fertilization. In short terms, the process involves many different injections to stimulate your ovaries to grow more eggs than the body typically would, daily ultrasounds and bloodwork, a surgery to remove the eggs, where they are then combined with the sperm and grown in a lab before being transferred back into the female already fertilized. I have been through a lot in my life, but this is physically and emotionally one of the hardest things ive ever done. The process of trying to have a baby is hard enough before you add countless shots and hormones…

Many of you have seen pictures ive posted in the past few weeks in the hospital or at a doctors office, which once again has started to feel like home during these past few months. Although this has been a process that we don’t yet know the outcome of, the one thing I do know is no matter what the pregnancy test says at the end of this, it is a success in my book. It has brought River and I to a new level in our marriage. If your marriage can survive crohns disease it can make it through anything. If it can survive IVF, you deserve a fucking medal. Whats next? We wait. We wait and we enjoy each others company and time spent together, because if all goes as planned time will be few and far between in 9 months…

Only time will tell.

scars

    

Ive been spending a lot of time recently thinking about what it means to live with a chronic illness. I have been so fortunate the past several months to be healthy enough that I almost forget what I have been through and whats in store for my future. Almost. That’s what its like living with a chronic disease. Tomorrow is never promised. I have been through more in the past 8 years living with crohns than many people will have to go through in a lifetime. But the reality is that I am only 25, and I have the rest of my life, both the good and the bad, in front of me. My crohns, although in the background right now, will be a shadow following me around for the rest of my life. I walk around everyday waiting for it to jump out and say “BOO! Im back” but I will never know when that day will be. I have had to choose to live my life in a way in which I am not scared for tomorrow or for that day to come, but rather to enjoy my healthy life to the absolute fullest and be prepared for the day that the doctor tells me my crohns is active again.

Having a chronic illness affects so many more parts of your life than just the one area it targets. Crohns may be a digestive disease, but it impacts so much more than that for me. Both mentally and physically living with it is exhausting, scary, and difficult. My crohns may have taken my colon, rectum, anus, and 9 inches of my small intestines, but it has taken so much more from me than that. To a person on the outside looking into my life right now, you may not guess im sick. Yes I wear an ostomy bag under my clothes, but I also do everything any other 25 year old would do. This is a double edged sword for me because although I look normal, I really carry around more scars than the ones visible to the eye. People often say to me, “but you don’t look sick…”. No one understands how hard that is to hear. Although I appreciate it, looking sick isnt the whole story, theres much more than that under the surface. River and I have been

trying to start a family for a year and a half, it’s a scar I carry with me inside. My crohns took away my ability to naturally start the family I so long for. Because of all the pelvic trauma and surgeries ive undergone, scar tissue was formed as my organs shifted to compensate for the colon that no longer is there. This scar tissue formed around my uterus and blocked my tubes. The point of my story is that you cant judge a book by its cover because you never know…

My crohns, for now, has taken a backseat to my everyday life. I spend my days doing things I love and am always grateful that I am able to do these things. I have found myself feeling guilty for not finding the time to update this blog as often as I want or should. When I started this blog it was a form of therapy for me. It then quickly because a form of therapy for others. I am proud knowing I have helped at least one person with crohns or someone learning about crohns through my writing. I want to take a risk and turn this blog back into its original purpose for me; therapy. I just don’t require the same therapy as I did before. I find that my struggle with infertility is a lot harder to put into words than my struggle with crohns. I don’t talk about it, I don’t like talking about it, I don’t want to talk about it. But I feel that I need to talk about it. Its such a painful and personal subject and ill keep you guys posted on this new journey.

For now I choose to be happy. I choose to be thankful. I choose to take every day as it comes and remember the darker days where the crohns controlled my life. For now I choose awareness. I choose talking openly and honestly about what I suffer from living with an invisible disease.

all is great, but nothing is perfect

The past few months have been a total whirlwind of emotions. We are officially moved in and settled down into our home in Cleveland and couldn’t be happier. The process of moving and accepting a new normal is never easy and as much as I wanted to move home to Cleveland, I had a harder transition then I thought I would. Saying goodbye to the city and the people we had met along our journey was heartbreaking, but in the end I know we left with family that we will remain close to for years to come. As far as being homeowners in Cleveland, it has been everything we dreamed it would be. We settled right back where we left off in Cleveland and have been enjoying everything it has to offer, including our cavs season tickets! Moving was honestly the worst thing ever and I don’t think I want to do it again for a very long time. Having a place that is ours to decorate and use however we want is an amazing feeling, but is also totally exhausting. For several weeks I ate, slept, and breathed unpacking. Things have finally calmed down and we are able to sit back and enjoy all the time, energy, sacrifice, and hard work it took to get us to the place we are now.

We’ve both been working our new jobs for a little over a month now and are so incredibly happy where we are. The transitions were pretty major, but we both seemed to adapt well. River went from a midsize accounting firm in manhattan to a single man CPA practice in Cleveland. He joined Charles Den Heijer CPA, where he is working alongside Charlie running the company and doing some VERY exciting tax work. He is slowly and enjoyably learning to be his own boss. I on the other hand went from being a nanny for two families to working for a global company. Holy transition. I joined the Hyland Software staff in Westlake, Ohio where I became an infant teacher at the child enrichment center (CEC). I am so incredibly in love with this company, my co-teachers, the families, and of course, the 12 goofy babies I get to see everyday. Its such night and day compared to what I was doing before, but it is such a great fit for me.

Crohns wise I am doing very well. I had some nerves about potentially having a flare during this move because of all the stress, but my body handled it very well and everything went smoothly. Saying goodbye to my teams of doctors in New York wasn’t easy, but I am slowly re-establishing relationships with my doctors in Cleveland to make sure everything stays on track where it needs to be..

All is great, but nothing is ever perfect. Life is a game of balance and sacrifice, and we all know that we cant always get what we want. As happy and blessed as we are in Cleveland, we’ve also been dealing with some loss and hard times. We have wanted to have a family for as long as we’ve known each other and we understood that with my surgery last year that was going to become much more difficult. A year later I sit here healthier than I could have ever imagined and so happy for that, but aching for the one thing I don’t have; kids. Its been a really personal struggle that we haven’t been able to talk about much, but we’ve recently learned that despite trying, we really aren’t going to be able to naturally conceive. It was a very tough dose of reality to swallow, but I understand that life has balances and I sacrificed this in order to be healthy, something that I will never regret. River and I will have a family, we just now know that it will not be how we hoped it would. Were starting to explore our options, and I will share them with you when I am ready to talk about it.  

For now, we are ecstatic to be exactly where we are in this moment and are looking forward to our first holidays in our new home. Well never forget what it took to get where we are.

Love and hugs,

C