So a lot happened today at my doctors appointment and some big decisions need to be made in the next couple of weeks. Firstly, my doctor wants to perform another colonoscopy to see how things look in comparison to the one I had in December now that I have been on the steroids for a few months. Colonoscopys are never fun but are such an important part of routine maintenance. Typically people don't need a colonoscopy until their 50th birthday, and this will be my 8th, I'm a veteran at them! So we scheduled that for next Tuesday which means I will have to stop eating on Sunday night and take the prep Monday PM. I was very impressed with my doctor this appointment as she knew my entire history of both symptoms and drugs without even pulling up my chart. She seemed really invested in my case and even consulted with some other doctors in the practice about what would be the next best option for me. My case is pretty tricky because I don't fit the "typical" pattern of a crohn's patient. The fact that my disease came back so quickly after surgery is not usual as well as the fact that my body simply hasn't responded as expected to any of the treatments that we've tried so far. Although this is somewhat discouraging, she explained to me that there are so many options out there that haven't yet been approved by the FDA but are in the process. This is why supporting research for these diseases is so important, it can really benefit someone like me who is running out of medical options!! When I was first diagnosed with crohn's in 2008 we decided to go with a drug called remicade. Remicade is given via an IV once every 6-8 weeks depending on how the patient tolerates it. Long story short, when I first used remicade my gastro doctor in Buffalo administered an incorrect dosage. I was actually getting about 1/10 of what someone my size should have been receiving. This caused my body to begin building antibodies and ultimately the drug didn't work for me. Am i hesitant that it will work now? absolutely. Dr. Schwartz told me that there is research out there that after a certain period of time and combined with another medication called 6MP that the remicade has proven to be effective. At this point, i don't think its a bad idea to try it again, i don't think it will hurt and it won't cross off a new option if it doesn't work. Remicade is a pretty experimental drug, it was only introduced in the last 10 years so not much is known about long term effects which is a little scary. Its an immune suppressant so I will have to worry about getting infections as my immune system will be compromised by the drug. Its actually pretty crazy, but the remicade itself is made from mice proteins, or DNA. My risk for developing lymphoma will also be raised 4x. These are all things that have to be weighed in on when making the decision to take a drug like this. In combination with the remicade I will be taking 6MP's which are just pills that are used for inflammation. I had an allergic reaction to the sister drug of 6MP, immuran, so we have to be careful that my body won't have the same reaction here. What is most important while on the 6MP is to monitor my blood levels very closely. I will need to have my blood tested weekly for the first few months and then bi-weekly once we are confident that my blood levels are staying stable. My abscess is also starting very slowly to come back and so she is putting me on 2 antibiotics to kick that in the butt (pun intended). Phew...long day, lots to think about. On a brighter note I got to go cuddle with the baby I nanny for yesterday and I get him for a full day tomorrow. Nothing to brighten your day like a baby. 

Laters, C

Its been a pretty uneventful week, medically, which is never a bad thing. Im on the last few weeks of the steroid (hopefully) and have my follow-up gastro appointment on Tuesday morning. I've been feeling pretty good, noticeably less so now that I'm on a smaller dosage of prednisone but still manageable. Im anxious to start my new treatment this week! Not only am i starting the new treatment, but I'm starting my new job! Im going to be a nanny for an absolutely adorable 4-week old boy! I can't wait to cuddle him and watch him grow. Because I had nothing going on last week i decided to make a spur of the moment trip to Athens, Ohio to visit my sister at Ohio University. I was too sick to visit on siblings weekend so i decided to surprise her and visit on Wednesday. From NYC it's about a 9 1/2 hour drive. I despise driving and any long trips we've ever made River has driven the entire time. The few times i drove the 3 hours between Buffalo and Cleveland were like pulling teeth. That being said, I was super nervous about driving to OU and went back and forth in my head if it was worth it. In the end, Kyra and River convinced me to do it and looking back I'm so glad i did! I left around 10 Wednesday morning and I made sure to take my pills before i left (I usually take them around 1pm). After a long and boring drive I safely made it to Athens and Kyra was able to start showing me the BEAUTIFUL campus. For anyone whose never been, its in Southern, Ohio on a gorgeous hilly terrain. At UB, where i went to school, our campus was literally an eyesore. The buildings were all modern and in a row and there was nothing pretty about Amherst, NY. Loved the school, but sorry UB, you have nothing on OU (other than the lead in MAC east basketball, go BULLS!) So we had a pretty relaxing night, just the normal sister shenanigans. Thursday morning we wake up and i go to take my pills...low and behold i forgot to take wednesdays. I knew this would completely mess up my system, (which it did), so i tried to compensate by taking a few extra steroids.  Looking back, I have absolutely no clue in the world how i survived freshman year of college being as sick as i did and living in a dorm. It is so inconvenient for someone with crohn's to have to share a public bathroom with an entire floor of girls. Not to mention that with my luck, every time i really needed to use the bathroom, the cleaning lady would have the bathroom closed for cleaning. This is something that happens to me alllll the time, its so frustrating! Kyra is really understanding about my situation though and put up with me running to the bathroom every hour the day after i forgot my meds. Im so beyond being embarrassed about my disease, i no longer try to hide needing to go to the bathroom so often. Kyra and her rookie Alyssa took me to the dining hall for lunch on Thursday. Dining halls are one of the things you bitch about when your in college and you have to eat it everyday but once your an adult who actually has to pay for let alone cook for yourself and your family, they are like a giant buffet of possibilities! My favorite part was obviously the fro-yo bar, which i made Ky get me everyday. We did a nice walking "tour" of Athens because it was so warm out and Kyra showed me all the cool places on campus. I really liked how at OU everything is pretty much in walking distance...food, bars, stores, dorms, classes, arenas. At UB you pretty much had to drive everywhere. Thursday night we had a wine movie night with Kyras friends, who I beyond love. They were literally hysterical and its easy to understand why she loves college so much! Friday we watched the disappointing USA/Canada hockey game and after the way it ended we decided we needed to play with puppies at Petland. I don't support pet stores that sell puppies because i think it is so inhumane to keep dogs locked in a cage 24/7. The only reason I decided to go is because its not the puppies fault, and people who come to play with them is the only social interaction that these poor babies get. The petstore lady was pretty rude and snapped at me when i asked her how often they got the puppies outside or for walks. Her response to me was "Never. We don't want them to catch a cold or hurt the pads of their feet". She's lucky i didn't get around to asking her where they actually got these dogs...Anyways, we played with a bunch of cute pups and gave them extra loving. Friday night Kyra and I went to the local brewery where there was live music and split a flight of beers and a delish pizza. Saturday morning it was time to drive back to New York. Goodbyes with Ky are always hard, but seeing first hand how happy she is at school makes it much easier. The drive itself was pretty easy, and i only had to stop once to use the bathroom/get gas which is a major accomplishment, wahoo! I did hit about an hour of dead traffic in Maryland for an accident which really sucked, but the important part is that in the end I made it home safe to my 3 boys, who were all very excited to see me :) Today was full of relaxing, yoga, the dog park, baths for the dogs, and pulled pork for dinner mmm. 

Big week ahead! Lots to look forward to, C

Last week, during a blizzard, I trekked down to Mt. Sinai on the upper east side and met with my new gastro doctor. Of course, with my luck, she hadn't received any of my records from the clinic (they got sent to the wrong office) so we kind of had to go through my history a bit before getting down to business. Overall, I'm not sure how i feel about her approach to my case...i kind of feel like I'm cheating on dr. achkar and I'm not sure how i feel about it. Her approach to crohn's seems to be polar opposite of his and I'm not sure what to think. My treatments have always been conservative and her approach seems to be a bit more experimental. I think this may have something to do with the age difference, he's probably 10 years older than her. She was concerned as to why i wasn't put back on humira immediately following my surgery last may. Humira is an immuno suppressant drug used to treat inflammation in both RA patients as well as patients with crohn's disease. The long term effects are still unknown, it knocks down your immune system, and it, like most drugs for crohn's disease, can cause cancer. I don't understand why after a surgery that was intended to give me 5 healthy remission years the doctor would want me on it immediately without giving my body a chance to recover and just "live" drug free. I suppose i see both sides of the argument...As far as the next treatment option, she was not convinced on the cimzia, which is what dr. achkar and i decided we wanted to try. Im almost weened off the prednisone (I'm at 15 mg/day down from 40) and I'm starting to feel a difference. Im definitely having stomach pains again when i eat and having to go to the bathroom more, so I'm very ready to start whatever the next treatment is. I have another appointment with her next week during which time we will make a final decision. 

On a totally separate note, i wanted to vent/bitch a little bit about something that my other crohn's friends will be able to understand, especially those living in a city like new york. Ive noticed especially since I've been here that most public places don't have restrooms available. For someone like me, this is a major game changer and something i have to worry about before i go anywhere. If i know i won't have access to a restroom somewhere, i simply won't go. Many of the subway stations here seem to have restrooms but they are all gated off and closed. Lets face it, who would ever want to go to the bathroom in the subway, ew, but when your on a 45 minute train ride away from your house and you have a medical condition, what the hell else are you supposed to do. I cannot tell you the amount of times i have been somewhere and had to buy something simply to use the bathroom. Ive spent a fortune on stuff i don't need just because i needed to poop (excuse me). This is very frustrating for someone with a condition like mine and i hope that one day crohn's will get enough awareness for this to change. That is all

Until next time, C

Hi Everyone! 

Sorry its been so long since I've blogged, I've been feeling so well that I've been busy enjoying the city, so technically I'm not that sorry! But in all seriousness, the past few weeks I've been feeling amazing, almost better than I was pre-flare up. This is all due to the high dosage of prednisone, which i cannot wait to get off of! This Thursday I'm meeting with my new gastro at Mt. Sinai. Im very excited to meet her, but she has some major shoes to fill. Dr.  Achkar has been my doctor from the beginning and he knows my disease history so well and has been a god send the past 5 years. Im still going to keep him as the leader on my "case" but its quite obvious i need a doctor where i live for small things. Achkar has kindly agreed to work with my new doctor so I'm hoping it works out! I originally thought I would be starting the Cimzia on Thursday but Achkar wants me more off of the prednisone first, so within the next month hopefully ill be starting on that. River was able to take a half day on Thursday so that he can come to my 4:30 appointment. For an accountant in busy season this is a MAJOR sacrifice. As I'm writing this at 10:30 Riv is still sitting at the dining room table working…poor man. As always, i majorly appreciate his support and him coming to the appointment is important to me. He will ultimately be the one to administer the cimiza to me so its important they teach him how to do that on Thursday. He used to give me my humira shots (they were given in the form of an epee like pen) but the cimiza are syringes and we have to make sure he is comfortable doing it. I swear in another world he could have been a doctor with all the stuff he's had to deal with because of me! Meanwhile, I've been taking the New Chapter vitamins and my probiotics religiously and feel like a new person. Anyone who tells you supplements don't work are CRAZY! Im currently taking fish oil, iron, omega-7, bone health, a multi, and biotin. 

We've used the past few weeks to majorly enjoy this beautiful city! I have to say that this whole time I've been a skeptic but it really is growing on me. River and I took a date night last week and went to our first broadway show. We saw the Bronx Bombers, a show about Yankee greats. It was such a "New York" show and River especially loved it because it was able to incorporate baseball history. We started the night at a deli near Rivers office and got a giant delicious corned beef sandwich. Not a huge corned beef fan, so I got frozen yogurt and ended up eating half the sandwich anyways because it was so good. After the show I mayyyyy have gotten a gyro off the street, because honestly, who doesn't love street meat?? This past weekend we went out with some other first year accountants for happy hour in times square. Although i don't get any of their accountant jokes, they are hilarious to hang out with and listen to them bitching about work is priceless. Afterwards, River and I went to Eately, an adorable Italian market with all kinds of cool Italian specialty things ranging from fresh pasta and cheeses to pizzas to seafood. You can walk through the market with a glass of wine while you shop and eat. To anyone visiting New York, its definitely a cool place to check out! We didn't eat at Eataly because we had plans to go to our favorite pizza place, Grimaldis, for dinner. Best pizza in NYC sooooo good! 

Other than just eating, I've been actively job searching. My goal was always to relax and get well before this doctors appointment before I started looking for another job. I finally feel like I'm at that place where i am healthy enough to commit and i have an interview Wednesday so cross your fingers for me! 

until next time, C

Its been over a week since I've updated last and so much has happened since then. I am feeling like a NEW person. I finally finished my antibiotics and got the infection out of my system. Getting that all taken care of made such a difference. I keep running over in my head when I would have gotten the infection taken care of if i didn't go back to clinic. I don't know when exactly where or when i picked the infection up, but my guess is that it had something to do with my emergency room visit to New York Pres. The ER was so beyond disgusting it makes the Cleveland Clinics ER look like a spa. In one of the bathrooms there wasn't a soap dispenser, in another there wasn't a toilet seat, and there were dust bunnies the size of texas floating around so it wouldn't be surprising if i picked it up there. The other possibility is that i got it from taking antibiotics for my abscess. The antibiotics mess with the bacteria in your intestines and it can sometimes lead to infections. Anyways, now that its gone I'm finding that the steroids are working wonders and i am able to get the crohns under control for now. Ive been weening off of the prednisone and in 6 weeks ill be off of it altogether. For those who are unfamiliar with steroids, when taking such high dosages you have to ween off of them or your body can go into shock. I start to get headaches right before I'm due to take my pills because my body is "craving" the steroid. Each week for 2 months i take 5 mg less until I'm totally off of them. The past week I've continued to research further into holistic options and I'm planning on starting a full gluten free diet starting when i start my cimzia treatment. Everyone that I've talked to has had nothing but great things to say about the diet and have said that it has changed their lives. If anyone has any recommendations on the subject, please, let me know! My uncle Brian works for a vitamin company called New Chapter, which is a high quality vitamin company that strives on making vitamins from all natural properties. "

Each New Chapter multi-vitamin is an innovative blend of these cultured vitamins and minerals, formulated to meet your specific life stage needs. Many of our multi-vitamin and targeted nutrient products (such as Activated C Food Complex) also include artisanal blends of targeted herbs to support specific areas of wellness."

Brian ordered me a round of several different vitamins that he thinks i can benefit from and i can't wait to get them started. I know some people are iffy about vitamins and many think they are just a waste of money, but i live by them and take tons daily. I typically buy the cheaper ones because lets face it, they're pretty expensive, but from what Brian explained to me they aren't made from natural properties and therefore our bodies aren't able to process them and use them as effectively as say the new chapter vitamins. Ive also started taking probiotics in the past week. I bought mine at whole foods in the refrigerated section. They're kind of expensive and i plan on switching over to a pill form but to get them kick started I'm going to do the yogurt form for the next couple of weeks. 

Overall, i feel worlds better than i did last week. Ive been doing yoga everyday, taking the dogs to the park, and river, arden, amber & i even went out for…chicken wings last week. MAJOR accomplishment that i was able to eat a chicken wing and not keel over. Tomorrow the 4 of us are going to the Cavs/Knicks game at the Garden and then Super Bowl festivities this weekend!! 

Until next time, C

My first week back has definitely been full of ups and downs. It kind of seems like every step forward I take, the next day is two full steps back. Its a little discouraging, but I'm keeping my head up. This was Rivers first week of busy season and him being gone from 8am-9pm everyday hasn't been easy, but as always I'm nothing but impressed with how he handles himself and all the pressures of life. He comes home with a smile everyday and it makes it much easier for me to return the favor no matter how I'm feeling. Thursday was a really good day for me, i was able to be up more than i have in weeks. Arden and amber were coming over for dinner and i don't know if i had a lot of adrenaline or what, but i was cooking all day and even walked to the store. Ive noticed that my pain in the past week has gone down a lot. I barely need to take pain medication anymore and when i do still get pain when i eat i can usually get it to go away with a bath or my heating pad. Anyone who knows me knows that i literally take around 10 hot baths a day, i find them beyond relaxing and they are really the only thing that i find works with my pain. Ive never been about pain meds, although my doctors encouraged me to take something through this flare up because of how bad it is. I don't find they really work for me, and if anything they just make me more exhausted, something i don't need more of. Tomorrow i will start tapering off the prednisone which i am THRILLED about. Its hard to describe taking steroids to someone who hasn't before, but it literally messes with your entire body system. The biggest thing for me is sleeping. Im a really difficult sleeper as it is (i use sleep medication) but on the prednisone its a whole different story. Its impossible to calm your body down enough to relax. I can feel my heart beating extra fast or hard (i know it sounds so weird) and sometimes its beating so hard i have to catch my breath, which makes sleeping really difficult. My senses are also extra crazy, especially smell. The slightest smell can make me gag and just in general i notice small smells i never would have noticed before, really weird. Another major thing I've struggled with this flare up is my eyes. Its not uncommon for people with autoimmune disorders such as crohns to have their eyes affected, but its never been an issue for me until now. When i started the prednisone about a month ago my eyelids literally became swollen shut and my vision in my right eye became blurry. This was one actually one of the reasons i thought i needed to go to the clinic to be seen, i was afraid it could be an allergic reaction to the steroids. After several eye doctor appointments when i was in the hospital they told me that because my immune system essentially attacks itself (autoimmune disease) my eyes were one of the places it was doing so. They described my eye as having a blister on the cornea from this and prescribed me, you guessed it, steroid drops. They seem to be getting a little better but are definitely still bothering me for now. It pretty much sucks just being around my apartment all day, but for now i know that i need to just be rebuilding my strength. My appetite is slowly coming back, but I'm still losing weight everyday. In the past 3 weeks I've lost just about 10 pounds…which you wouldn't be able to tell by looking at my face which is really puffy because of the prednisone. I can't wait until i can start exploring the city again and hopefully soon find another job. For now its been cleaning, trying lots of new recipes, pretty little liars, and hanging out with the puppies. Looking forward to a lazy sunday watching football all day with Riv tomorrow. 

Until next time, C

My brother in law last night said something at dinner that I haven't been able to stop thinking about. We were talking about my situation and I was explaining some of the medical aspects of it to him and he told me that i had "the best poker face" and that just by looking at me you would never know what I was dealing with. I think was such an interesting comment and I agree with him, but I'm sick of it. So much of what I'm dealing with is kept to myself, or maybe River, but no one else really knows what I struggle with on a daily basis. Crohn's in general is not a disease people typically talk about because of the nature of the disease, but that is becoming a double edged sword. More people NEED to be talking about it. When I was diagnosed in 2008 I had never heard of the disease, and had I known about it, Im sure I would have been more likely to seek treatment earlier than I did. For close to two years i kept my symptoms hidden simply because I didn't know any better. I found every way imaginable to blame myself for what was happening to my body. I wasn't eating right, i was eating too much, it was stress related…i came up with every excuse in the book because I didn't know it was possible that there was actually a possibility that something really was wrong. Crohn's has affected so many different aspects of my life and I'm sick of having to have a "poker face" about it. All through high school I had to convince my parents that I didn't have an eating disorder, which was near impossible considering i was running to the bathroom every 5 minutes after i ate, I had to quit playing the sports that i loved all my life, and my social life was definitely impacted, I was no longer able to go out to dinner or parties simply because i knew i would end up getting sick and being uncomfortable. My whole life became a game of planning based on my crohn's. Still to this day I deal with that, and it causes so much anxiety. I have learned to cope with it over the years, but i know so many people probably aren't able to do that. Im asking you guys to please not pass judgement over someone who has this disease, and understand that although we may not look sick on the outside, inside and emotionally we struggle every single day. If you know someone who may have crohn's symptoms, ask them if theres anything you can do to help them, and urge them to go to a doctor quicker than I did so that maybe down the line they won't be struggling so much. Support is literally the best medicine in the world, and maybe if I start letting my guard down and showing people what someone like me deals with on a daily basis I can get more support and in turn, give more to other people who are dealing with similar issues as me. So thank you Arden for inspiring this post and for inspiring me to lose that poker face that I've had plastered on my face for years. If talking about my crohns openly and honestly can help one person, I will be beyond satisfied. Keep checking back with me for more on this one… Off to eat dinner with my amazing husband for now. 

Love, C