Breaking Point

The past three months have been hell. Looking back, I spent a decent part of 2013 in remission. Since  October 2013, I've been in one long flare up. I did have a month where I was feeling okay (mid February to early March), but besides that, my health has been shit (obviously). 

Constant pain and feeling like crap ages you. It wears you down, and sucks the life out of you. For the past three months, I've run a constant 99-101 degree fever. I feel always on the verge on getting sick, that my body is fighting a cold. In truth, it's simply fighting itself. I really hate complaining, but this is a miserable way to live. I've had my favorite foods, drinks, and activities (running, working out) taken away from me. Eating has become a chore, and almost fear inducing. Throughout the past ten years, post TBI, I have been so optimistic, so positive with whatever life handed me. At this point, I'm struggling. I hate living doctors appointment to appointment, hoping that the next treatment will lead to remission, or at least some form of relief. 

Most of all, I want my life back. I want to be able to go out and run 5 miles, and celebrate with an ice cold beer. I want to have the energy to go out with friends, to be able to eat out without fear of having an accident or end up in the bathroom all night. Again, I HATE complaining, but we all reach our breaking points eventually. 

kids.

Something that has been weighing on my mind a lot lately, has been the subject of children. As a child, I had zero interest in playing house, playing mommy or babysitting small children. I was more interested in playing outside or reading books. Even throughout my teen years, I refused to babysit and the thought of being around small children made me anxious, and want to run.

I haven't really shared this with many people, but this topic has been in my mind the past few days...

Around the age of 21, my feelings did a 180. Call it the early rumblings of a biological clock, or maybe my fear subsiding, children became a lot less frightening and perhaps even cute at this point in my life. At this time, I was in a serious relationship, and close to 22, had an unplanned pregnancy. At the time, I was overjoyed, and extremely excited. I was fascinated with motherhood, and my fears quickly fell away. Though not expected, I was in the middle of grad school, and was in a stable relationship, and would be able to fully financially and emotionally support a child. I was extremely ill through out the pregnancy, ending up in the ER biweekly for dehydration. At 16 weeks, I felt much more ill, and proceeded to once again go to the ER for what I thought was dehydration. I found out that I had had a miscarriage, which was earth shattering.

The next few weeks were a blur, and the months following were so emotionally taxing. My relationship fragile as it was, before the pregnancy, ended, and resulted in me moving back home with my mother, and trying to struggle through the spring semester of grad school. It was during this time, that I was initially diagnosed with Crohn's. So many thoughts consumed me- if I had been diagnosed earlier would my baby survived? Why wasn't this caught earlier? Can I even have children? This was one of my darkest times emotionally and the thoughts still occasionally haunt me.

With each passing year, I find myself wanting children, to be a mother, more and more. I know I'm young to start thinking this way, but at the same time, I realize that it will be quite the undertaking for me to have children. Even with the AIH diagnosis, I still will be able to have children. I will have to have an extremely planned pregnancy, with close and careful monitoring. I also will have to make sure I'm healthy enough myself in order to sustain a pregnancy (in remission from both diseases).

 I have asked my medical team if my illnesses would prohibit me from having my own genetic children, and there should not be an issue, but if there is, there are many many other options. There is so little research on Crohn's and pregnancy, and even less on AIH and pregnancy. I have yet to find a single study/case report/ anything on Crohn's, AIH and pregnancy, and my GI kindly informed me that he would gladly write a case study on me one day, to be the first of its kind. 


I'm not looking to have children tomorrow, or even next year. It may even be ten or fifteen years down the road.  There is no time line, no magic age, no impending doom. I also know while extremely unlikely, I may not be able to physically have children. This will not stop me from having children, biologic or otherwise. I want to be able to half the mother the mom has been for me. I want to love, teach, provide for and nurture. For someone who once gagged at the thought of playing mom, I find myself in awe of watching dads and moms playing with their kids on the beach, squealing at pictures of my coworkers children, and occasionally daydreaming of one day experiencing parenthood. I know that I have such a long way to go, and that's fine with me. Plus this girl has got to get herself healthy, finish school, buy a house and ya know, maybe find a significant other and have a stable and loving relationship before the thoughts of actual parenthood cross my mind...

25

Tomorrow, I turn 26. Needless to say, 25 has been far from what I expected. I expected to run my fifth Broad Street Run, complete a full marathon, run 3 half marathons, and a handful of 5ks. I expected for my health and job to stay the same, which was fine with me. On the bright side, I got an awesome promotion at work, one I wasn't expecting. I finally, after three years, walked in graduation for my Master's. I've worked on two published studies, and have learned so much in my short time in my new position.

25 started off with a partially torn Achilles, and severely inflammed tendons and ligaments in both feet and ankles. Three months of physical therapy later, I was back to new. A month or so later, I noticed that my Crohn's was becoming more active. For most of 2013, I was not in total remission, but feeling pretty decent. Around November, when things started to drastically change, knew it was time to tackle this full force.

By February, I was able to start Humira, and thought it was smooth sailing. Late March I ended up in the hospital with a non-functioning gallbladder, with surgery in April. May brought another surgery, acute liver failure, and a third life changing diagnosis (the first being my TBI, second Crohn's) of Autoimmune Hepatitis.

Life has sure kept me on my toes, and I can say that without a doubt, 25 was my best year yet. Yes, it's been crazy, and yes I've spent way too much time in doctors' offices, and one too many nights in the hospital. In return, I've gained so much appreciation for my life, for the opportunities I have been given. I finally am feeling comfortable in my own skin, and appreciative of myself, and that in itself has been more than worth the past years pains.

The joys of Prednisone

Out of the 50-plus medications I have taken over my life time, prednisone tops the list of being the absolute worst. Between my TBI, Crohn's and AIH, I've become no stranger to relying on medications to survive.

Prednisone, is one of the simplest medications, with hundreds of uses. It often tops lists of most essential drugs, and is life saving at times. Unfortunately, out of any drug I have taken, it has the worst side effects. It leeches calcium from bones, can raise blood sugar, blood pressure, increase or decrease heart rate and can even cause seizures. It can increase bruising (the past couple of weeks, I constantly look like I got into a bar fight), can cause depression, unusual thoughts, feelings or behaviors (more on this later), muscle pain or weakness, numbness, tingling of burning pain, and one of my favorites, rapid weight gain, swelling in your hands, ankles or feet.

Sure many other my other medications have much more scary potential side effects, like increased risk of melanoma, increased risk of cancer overall, but the incidence of these side effects are under 1%. Prednisone's side effects happen much more frequently, and have much higher incidence rates.

In other words, while taking high doses of prednisone, I become a rotund, raging bitch covered in bruises. Soooo totally sexy. The weight gain, bruising, numbness, heck I even broke a bone on my last course of long term prednisone, I can deal with those side effects. It's the mental effects I cannot deal with. Having suffered from generalized anxiety disorder, OCD, PTSD and depression for the past ten years, I am no stranger to mental health issues. Through years of therapy, and finding the right cocktail of medications, 95% of the time I feel fantastic. Though I have a safety supply of Xanax as needed, before prednisone, I had not had to take one in over six months. Like with my previous course of long-term prednisone within the first week, I noticed my anxiety come out with a vengeance. I am short with people, have mood swings (hello crying for no reason at all), and the persistent anxious thoughts. I turn into a Jekyll Hyde, and feel like I have no control of my thoughts or emotions, I feel grateful that at this point, I know what to expect. I know that I can get through this, and these are not my thoughts, that it's not who I am. It is so incredibly scary though, to know that one simple, life saving pill can cause so many issues.

Unfortunately prednisone is the drug of choice for almost all autoimmune conditions. It simple, in that it works. It's cheap, effective and easily obtained. Unlike the alternative steroid used in UC/Crohn's, Entocort (a steroid that less system and targets the GI tract) costs about $1500 per month supply. Many insurances do not cover it (for prednisone is available at a much cheaper cost) and even when they do, the co-pays can still run up to $800. The side effects are that of Prednisone though not to the same magnitude. The efficacy of Entocort is also sometimes not as great as Prednisone, so that's another deterrent for its use.

When I see both my GI and liver doc 7/15, and depending on my blood work, I'm going to ask to be taken off. My mental health, has what kept me sane through the physical pains and ills of Crohn's, and AIH. It has what kept me going, kept me positive, kept me sane. Now that it's altered, I feel worse physically as well. I just can't do it any longer, and I know that as a patient, I have a choice. Fingers crossed I'm healthy enough to get off and that my liver plays nice.

Nashville

Sorry for the lack of updates, I'm at a conference for work in Nashville until Thursday. I'm exhausted, but trying my best to maintain. Since starting Humira again on 6/16, I've noticed almost no improvement. I'm disappointed. While on Humira the first time, I noticed a drastic improvement within a few days of the loading dose. Maybe it's because I did not have a loading dose this time around, or that my disease has progressed. I have appointments to follow up with my GI and liver doctor July 15th. I will be able to get in two more doses of Humira during that time, and will also be getting blood work done to see how my liver is tolerating it.

The heat and humidity have also made this trip a bit torturous. Each night, my ankles and knees are grapefruit sized, along with my hands being extremely swollen. Enough complaining for now... It's time to fit in a short nap before more presentations!

Hi Mom!

While I love my mother dearly, and often can never find the right words to describe her, I can say that she is not technology savvy. She can change her own oil, re-finish cabinets, use a rotatiller, but when it comes to computers, she can check her email, and that is about it. Imagine my surprise this past week when I get a text of "Hi honey, I read your bio and I love you so much" ....my bio? "Your bio online where you post about different subjects".. Que lightbulb moment.."Oh! My blog!"

We then had an in depth discussion, of how she has been able to see a totally different perspective of my life, of what I have been going through. For the past ten and a half years (since my TBI), she has always played a very active role in my health care. The past three years, since starting my journey with Crohn's, has been no different, even though at the time, I was already an "adult" at 22. She has sat in on almost every doctors visit, taken me to each test, each scope, each surgery. She has played the role of patient advocate, Nurse Rachet when I was being hostile, insurance extraordinaire, therapist, friend, and mother.

When people ask why I started a blog, or why I would want to share my feelings with the whole world, besides being therapeutic for myself, it also raises awareness. Whether it be to give my mom a better understanding of what I'm going through, or for my friends to follow my progress, or for those just diagnosed with Crohn's or any other chronic disease. I have met some absolutely amazing people through blogging and social media, from all over the country that I can relate to. While Crohn's is affecting more and more people, is still is not extremely common. Autoimmune Hepatitis is much more rare, and I feel like the only person alive that has had a severe TBI, with both Crohn's and AIH (AIH is more commonly seen in those with Lupus, Rheumatoid Arthritis and Sjorens, and seldomly UC). I know it can be so difficult to relate to, and hell sometimes I struggle being in my own body. Even just for my mom's sake, I hope this can serve as a tool, for her to be able to understand what I'm going through a little bit better. If it helps other people, that's great too. Now if only I could help her understand technology a bit more...

Brutally Honest

This is going to be brief.

Today was the first time in two years that I have had an "accident". Well, I actually had two by 8pm. I'm not going to sugarcoat it any longer. I lost control of my bowels, and defecated on myself. Totally glamorous and totally sexy for a 25 year old girl.

In other words, I shit myself. Why am I being so brutally honest? Crohn's is not a sexy nor glamorous disease. Crohn's is a disease that takes away all dignity. People continually post on facebook pictures of mastectomy scars, and beautiful bald heads from chemo. On the other hand, I have seen in numerous groups on numerous posts of pictures of ostomy bags, of resection scars, comments that read "totally disgusting". I have friends who pictures of their ostomies get reported for vulgarity.  It is heartbreaking and defeating to witness this on the internet. The stigma of bowel disease is unsettling I a time where typical over sharing is a-ok, and a social norm.

I want to help break this vicious cycle of embarrassment, of stigma, of hesitancy. I am Nicole, and today I had two accidents. I also went to the bathroom over 20 times, and managed to vomit twice. Crohn's may be winning at the present, but I'm not going down without a fight (and being brutally honest while doing so).

happy happy happy... For Humira!

I got cleared to go back on Humira for my Crohn's! I've been off Humira for two and a half months. In that time, my Crohn's has come back with a vengeance. It's spread through out my entire colon, and part of my small intestine. I've been in pain, and the urgency and frequency of going was the worst since around the time I was originally diagnosed.

I'm anxious. My immune system is already in the pits from the prednisone and azathioprine, and adding in Humira will only multiply the immunosuppressive effects of the two. I also have substantially upped my risk for certain forms of cancer, that have been associated with the combination therapy of azathioprine and Humira (and other biologics). I'm continuing with biweekly blood work to monitor my blood counts, and my liver function, for another factor in the equation will be how my liver reacts to the Humira. There is very little research on Autoimmune Hepatitis to begin with, let alone when occurring in someone with Crohn's. To try and find research on treatment/therapy of the two diseases together has been impossible, which adds a bit to the stress.

I'm taking it one day at a time. It's all I can do. I got to see my favorite doctor, my GI, this morning. He has helped this whole situation manageable. Live-able. Tolerable. Am I scared of what the future may hold? Am I worried about the long terms effects, of well, everything? Absolutely. Having someone in your corner though, helping to make major medical decisions, to have someone who will pick up the phone 24/7 in case of emergencies, and who will advocate in times of need. I will be following up in a month with him, and seeing my hepatologist the same morning. Fingers crossed this works, and my liver stays well behaved!

Stage 3: Bargaining.

I've officially hit the 3rd stage of grief, bargaining. I've caught myself doing this for the past week or so.

Bargaining the "third stage involves the hope that the individual can somehow undo or avoid a cause of grief. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Other times, they will use anything valuable as a bargaining chip against another human agency to extend or prolong the life they live. "

I often say hey, it sucks, but at least I have great insurance, or at least I have a great job. I find myself saying and thinking about bargaining multiple times a day. I have a minor in psychology, and have taken numerous psych courses, but it still surprises me how innate the stages of grief really are. They unfold without cognition, without thought, and often without plan. Some may get stuck in anger, while others depression. I'm scared to death to hit the depression stage.

People question the Kubler-Ross model of stages of grief, especially applied to things other than death or dying, not to mention diagnosis of a chronic disease, with no cure. With my Crohn's diagnosis, I had known for months what was coming. I had had bowel issues for quite sometime, so it wasn't surprising when I was diagnosed, especially with my family history. I had months to think research and plan. With the Autoimmune Hepatitis, I feel like I was slapped in the face. I had been told about a year ago that I had mild Nonalcholic Steatohepatitis, but that it wasn't off too much concern. This past April, when I was having gallbladder issues, I was told that my liver problems were due to my gallbladder not functioning and that after surgery, my liver would normalize.

Much to my surprise, instead of my liver healing, I went into acute liver failure. I was told that I had a disease, that left untreated, 90% of patients die within the first year. A disease that, 60-70% of patients will require liver transplant within 10 years of diagnosis. I know these are just statistics. I have an advanced degree in the study of diseases, and calculate attack rates, case fatality rates, odds ratios and biostatistics daily. Adding in Crohn's, I'm at a much greater risk of complications, and frankly, death. Does it scare me? Absolutely. Will it stop my life? No, it won't stop my life. It will take time, and maybe a decent amount of it, to cycle through all five stages of grief. I will try my best.

el jefe del hígado

Or in English, the boss of the liver. So had my last biweekly date with my hepatologist, we are now graduating to monthly appointments!

So, like as I expected from my liver biopsy pathology report, my liver is SCREWED. The biopsy has confirmed, that I've had long term, severe inflammation caused by Autoimmune Hepatitis. I'm so so incredibly lucky that my GI saw my lovely cup o' urine the day of my colonoscopy. It's what caused me to get an immediate appointment with the liver doc, and we were able to catch the early stages of acute liver failure. If I had waited even a week or so longer, I would mostly likely progressed into total liver failure, and required a transplant.

I love my liver man for his bluntness, and openness. Within ten years, I most likely will need a transplant. I have at least one full year of monthly visits, blood work, follow up and heavy duty medication to send this puppy into remission. I'm happy because I was able to taper down to 10mgs of prednisone, but it also means I have to double my dose of azathioprine... Killing my immune system further (and increasing nausea and hair loss). I am meeting with my GI Monday, and will be coming up with a treatment protocol for my Crohn's.

My saving grace, is that my LFTs continue to come down. Even when they reach the normal range, I will still have to continue meds for at least a year. I can live with it. My brain has just been so over whelmed with everything going on.