The past month has been a busy one and I let the blog get away from me for a while, so, lots to update on. After my last colonoscopy we decided to go forward with remicade, an anti TNF therapy as my treatment. My doctor also started me on a drug called Mercaptopurine or 6-MP, which is an immunosuppressive drug that combined with the remicade would hopefully control the inflammation in my intestines. As always, both of these drugs have some pretty scary potential side effects ranging from TB, to fungal infections, to viral infections and lymphoma. Obviously its a balancing act in which you have to weigh the risks with the benefits to decide that these treatment options are right for you. When i was first diagnosed with crohn's in 2008, remicade was one of the first therapies i tried. After about a year of unsuccessful treatments, we discovered that my GI doctor in Buffalo had been administering the wrong dosage of remicade the entire time. I was essentially getting 1/10 of what someone my size should be getting. This caused my body to build up antibodies to the drug and made it no longer an option for me to use anymore. Because of that, i was a little surprised and hesitant when my doctor suggested we try this as our next option. There have been studies that show that combined with the 6MP there has been success with re-induction of remicade. At this point, my options are so few that i was more than willing to try the remicade again before moving onto a totally new drug. The remicade is administered via IV at an infusion center. Ive had treatments at several different infusion centers over the years but honestly the one at Mt. Sinai felt like a spa. There was a fully stocked snack bar, fridge, and recliners with pillows and blankets in a private room. Because I was being re introduced to remicade, my body had a higher chance of having an allergic reaction to it based on the antibodies i had created to it. Because of this, before the infusion starts they gave me Benadryl and steroids to help with any potential side effects. The benadryl knocked me right out and i slept through half the treatment no problem and watched movies with River the other half. Things were looking up, i was hopeful that the remicade would work, and spring had finally arrived in NYC. I've been keeping busy with work and working out, I've started a workout program called T25 and I've been feeling great about it. Some of Rivers family came into town at the beginning of April and we got to see a show and have a couple meals with them for the short time they were here. River and i have also been trying to take advantage of the nice weather by doing some outdoorsy things. Last weekend we walked on a path down by the river and let the dogs swim for the first time this spring. Swimming is something they have definitely missed since we moved to the city as they used to be able to swim everyday at the dog park we went to in Buffalo. We also went to the botanical gardens in the Bronx and got to walk around the grounds and see the orchid show they have on exhibit. This past Monday was my second remicade treatment. It was the day before tax day so i was hesitant to ask River to come because i knew how busy he was at work. He, as always, insisted on coming and I'm really glad that he did. About 30 minutes into my treatment I was having a really hard time breathing. It felt like someone was sitting on my chest and I couldn't catch my breath. I also felt like my skin was on fire. My face turned bright bright red and i got a blotchy rash all over my body. I was having the dreaded allergic reaction. River rushed out and got the nurses who all ran in and pushed more steroids and benadryl through my IV. It was a truly terrifying feeling not being able to breathe and trying to remain calm and not panic. All the gasping for air made me nauseous and i spent about a half hour throwing up. They were finally able to control the reaction and get me comfortable again, thankfully. The staff handled the situation very calmly and quickly which was appreciated. The next morning i met with my doctor who immediately said that remicade was no longer an option. This was a little surprising to me because the people at the infusion center said that it happens all the time and that they just give you more benadryl beforehand, but people are still able to continue. Apparently my reaction was pretty bad and she wasn't comfortable with moving forward with another dose. So here we are, months later, and back at square freaking one. Now the question once again was, where do we go from here. There are 3 anti-TNF medications, remicade, humira, and cimzia. I have now unsuccessfully used 2 of them, so the chances that i would respond to the third is slim. The problem is that there are not many other options out there. Several new treatments are in the process of being approved by the FDA and will hopefully be cleared by early summer. There is also another drug that the hospital is currently doing a clinical trial on that my doctor thinks i may be a good fit for. Theres a rare side effect with this drug that causes a fatal brain infection. The risk is very rare but its still obviously something to consider before doing the treatment. The last option is a drug called Stelera that is approved for psoriasis but not yet crohns. Its realllllly expensive and hard to get approved by insurance because crohn's patients need it in higher doses that are currently approved by the FDA. My doctor is going to try to get approval for the stelera or get me into the trial. All this means for me is that in the interim, i don't have any therapy other than the steroids which i am not back to taking a higher dosage of. 

I have lots to look forward to the next couple of months and I'm really ready to finally find a treatment that will work for me. The second week of May were heading to chicago with kyra, braden, and alli to celebrate my uncle Brian's wedding. I adore Chicago and River has never been so I'm excited to do that. The following week were finally headed back to buffalo! My list of things i want to do in Buffalo grows everyday. Were going to go to the dog park, the senior games for UB, visit friends from zettis and the daycare. The list goes on and on and i am so excited for it! We bought wicked tickets for my birthday at the beginning of June and then I am off to San Francisco for a week to visit with my cousins and cuddle with precious Portia! Lots to loo forward to, just gotta push through the next couple of months! 

Until next time, C

Well, today was the dreaded colonoscopy day. This marked my 8th colonoscopy in 6 years and my second in the past 3 months. You would think they get easier, but really they suck every time. I assume most of you have never had a colonoscopy so i'll break it down. The day before your colonoscopy you are not allowed to eat anything other than clear liquids (broth) and popsicles. I, naturally, always eat up until midnight the day before the fast. For such a small person, i really eat more than most people i know and the fact that i can't eat for 24 hours is always the hardest part for me. The night before the actual procedure you have to prep your colon. This involves drinking a bowel prep solution intended to clean out your insides. Drinking the solution is really gross and i always have a hard time keeping it down, especially on an empty stomach. Last night I went to mix the solution and after i had poured it, i went to shake it and the entire container flew out of my hand and across the room and spilled everywhereeeee. The solution is by prescription only, and by that point there was no way to get another one so i was send into a panic. I drank the rest and everything turned out ok, but ahhh, what an idiot i was! When i schedule these procedures i try to make them as early as possible so that i can eat sooner, but today my appointment wasn't until 1:30 so i woke up starving. When we finally got to the hospital i got to put on the cute (not) gown and get all hooked up to my IV's. When most people get colonoscopy's they are put under via conscious sedation which means your still awake but just really loopy. Ive had problems with that before where I for some reason still feel it so now they just knock me out entirely. My doctor wanted to do this colonoscopy to see how things look since I've been on the steroids. I've certainly felt a ton better since taking them and we wanted to see if my insides looked as good as i felt. She also wanted to have a starting point before I start the major treatment, remicade, next week. As it turned out, things actually looked worse than they did in December. This is obviously bad news, but the fact that Im feeling good makes it ok, it just means that we need to start the remicade asap. In December the majority of the active disease was in my colon, and there was none in my small intestine where I had surgery last May. This time, however, active disease was found in both the large and small intestine with some narrowing in both. I also have some pretty scary looking ulcers, which account for any pain or bleeding that i have. Overall, I'm not shocked by what we found today because I knew that the steroids were essentially a "bandaid on a bullet wound", meaning they were never supposed to fix the problem, but rather just hold me over until we found a solution, which they did. 

Now time to watch the real housewives of NYC and eat pad thai.

C

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