Its been over a month since ive blogged. The summer has been so busy and gone so fast.  I have to start this post off on a negative note. Most of my Cleveland friends have already heard that there was an armed robbery at a beloved Cleveland heights restaurant. During this senseless act of violence the owner was shot and killed. My little sister worked at the colony for years and considers her co-workers a second family. This tragedy has affected her tremendously and my heart breaks for all involved. When I first heard of the shooting my initial reaction was sadness. Sadness for his family, the community, the restaurant, the employees, but I also felt sad for humanity in general. I cannot begin to fathom how a human could take another humans life for something as trivial as money. I also felt sad that I couldn’t find the words to explain to my 19 year old sister why people like this exist and commit such heartless crimes. As the days went on and the cowards were arrested my sadness turned to a burning rage. This happened minutes from where I grew up in a place that I went with my family countless times. These “boys” decided that on a Monday afternoon they were going to bite the very hand that fed them. I say that because one of those involved was no other than a colony employee who was given nothing but chances from the very man who was shot and killed. I know stuff like this happens everyday all across America but for many reasons I felt very emotionally connected to this incident. My faith in humanity was restored when a gofundme account was created by a member of the community to support the employees who no longer had income because of this crime. In less than 24 hours some $30,000+ was raised, with much more to come. I encourage all who haven’t seen it to check it out and donate whatever possible, every little bit helps and I can vouch that these employees are the real deal. This makes me so proud of the community that I came from and will always call home no matter where my current address is. I cant wait until the doors of the colony re open.

I have found a recent perspective in my life in the past year. I really feel like I grew up a lot and learned not to sweat the small things. Those who know me know that I am a super high stressed person who often lets the small things bother her. With recent events in the last year I have to just look at the big picture and realize that despite all my problems, they are only touching the surface of what others go through.

June was an amazing month for me and it flew by in a flash. We celebrated my birthday by going to see Wicked on broadway, something ive wanted to do for the last 10 years. I also got an unexpected birthday present when the Rangers made the Stanley cup finals! We spent many a nights screaming at the TV watching the underdog rangers get there. I was fortunate enough to get to take a trip out west to visit my cousins and my aunt. I absolutely adore my California family and despite the fact that we only get to see each other every 5 years or so, the second I got there it felt like I never left. My cousin Bijan and his wife Panoo have the most adorable daughter Portia who I could have packed in my suitcase and stolen she was so cute. The trip was a much needed relaxation period away from the stress that the city brings. Its such a different way of life out there . I spent my days going to vineyards, feeding new born cows, playing with baby goats, enjoying nature and the company of my family. I wish River could have been there to experience this trip with me but were definitely going to plan a trip out there next year.

Medically speaking this summer had been pretty rough, but ive done everything I can to not let it bring me down. Unfortunately, I did not respond to the cimzia that we started in the beginning of May. This was essentially the last drug in this class of drugs and with its failure brought a lot of question marks about what would be next. At this point, another surgery is one of the possibilities, however it is the exact thing we are trying to avoid. Because of my prior surgery and the location of my disease, another surgery would almost guarantee that I would have a colostomy bag for the rest of my life. This is obviously a very bitter pill to swallow and I would like to avoid it at all costs. The other option is basically a newly FDA approved medication that is for patients who have essentially exhausted all other options. I fall into this category but the issue was going to be getting it approved by insurance. This drug is called entyvio and its very hard to get your hands on. The Cleveland Clinic doesn’t offer it yet and although Mt. Sinai is able to prescribe it to a select few patients the hospital itself doesn’t have the drug and has to send patients to one of the few infusion centers in the city that is cleared to administer it. I just found out that it was approved for it and I have an infusion scheduled for this week. At this point I’m extremely optimistic about this drug working because its structured much differently than anything else ive taken. That being said, however, Im sleeping with one eye open because at this point I realize how few my real options are. Because of the severity of my case I was able to get in to see the “top dog” of crohn’s doctors in NYC. This doctor is going to head the new gastro department at Mt, Sinai and worked on numerous research including finding the gene that is linked to crohns disease. He is kind of a big deal. Please cross your fingers, toes, eyes, arms, legs, and anything else possible that this treatment works for me!

This weekend is my one year wedding anniversary and River and I celebrated by renting a cabin in the catskill mountains for the long fourth of july weekend. The cabin is just what we needed. I didn’t think it was a real thing that people could get no cell phone service but that is just how far in the middle of no where we were, and it was perfect! We did drive about a half hour to get service one day because river needed to know the world cup scores and for some reason we had a feeling lebron signed with the Cavs…whats wrong with us! The weather at first was a bit questionable and cold, but as the trip went on the sun came out and we were able to enjoy all that nature had to offer. We did some swimming, hiking, star gazing, had a fire and just in general relaxed. The dogs are going to sleep all week because of how much running and swimming they did, ive never seen them happier.

River has officially sat for 3 of the 4 CPA exams with the last one coming at the end of August, hes been busy at work but still finding time to play on his firms kickball and softball teams. I have also been busy at work with my buddy Jonah. Weve been loving the summer weather and spend most of our days outside…what could be better?

Next month my mom and kyra are coming to visit and I cant wait to show them the craziness that is my life. Hope everyone is having a great summer! Don’t forget to tell those who are important to you how much you love them…life is too short.

This past month has been an absolute whirlwind, its hard to believe its already the end of May. I've been feeling so-so, but have been trying to keep a positive outlook and enjoy all the exciting things happening in my life. This was such a long and hard winter that it feels amazing to get outside and soak up as much sun as I possibly can. New York City really does come alive in the spring and the weather (minus the rain) has been perfect; not too hot, not too cold. River and i have done some traveling this month, starting with a trip to Chicago for my uncles wedding. This was a rare opportunity for me to see some family that i don't often get to see, including my two favorite people, my sisters. River and I packed the dogs up and hopped in the car heading to Cleveland first. We got to see my moms new house which is so country and cute, perfect for her, for the first time. We then headed to Toledo to pick up Braden and Alli and made the trek to Chicago. The weather was perfect and we got to do a little exploring of the city before the wedding started. The wedding was small but very classy. The band was amazing and we all had a great time dancing and drinking. Note to self; don't drink cosmos, wine, champagne, sangria, whiskey sours, fireball, chocolate martinis, and beer all in one night, it makes for a very long and miserable car ride home the next day. This was our first trip back since Christmas and i forgot how far away Cleveland is. It pulls at my heart to be so far away from our families but it makes it so much more special when we do get to see them even if for a short time. This past weekend we made the first trip back to Buffalo since moving to NYC. I have been excited for this trip for months. We lived in Buffalo for 5+ years and i didn't realize until this weekend just how much i miss it. We really did begin our family there. We were 18 and young when we moved there and we left 23 and married with 2 furry babies. I was able to go back and visit Butterfly Kisses, the daycare i worked at. I couldn't believe how big my babes had all gotten. Seeing the teachers made me feel like i never left. Everyone there is so friendly and leaving was the worst part about moving, hands down. I got to go to an old co-workers baby shower (she's having twins, eeeek!) while River stayed at the hotel for a couple of hours studying for his CPA. We were able to squeeze in almost all of our favorite places in the short 3 day trip. We made a trip to Grovers, a Buffalo famous burger joint, the outlet mall (obviously), Wegmans, Zettis, the dog park and of course the baseball field. The absolute highlight of this trip was getting to take the dogs to the doggy park. The transition to New York was hard enough for me and river, but thinking about how hard it was for the dogs makes me sick. They went from having a full house with a fenced in backyard to a tiny one bedroom apartment and having to pee on the sidewalk. When they realized where we were when we got to the park i honestly thought they were going to pee in my car. The park was always an unofficial dog park, meaning almost everyone who goes there had a dog but you technically weren't allowed to let them off the leash. The warden would occasionally come and you would get a ticket if you didn't have a leash. This January the regulars at the park pushed and were finally able to get it turned into an official bark park. We were in heaven, there were 50+ dogs there all weekend. The boys were so stressed out because they didn't know who to play with first. This is something they just don't get in the city. the dog parks here are just small fenced in areas, nothing like the island that the buffalo park is. River and i have been having the conversation about where we want to end up living in the next couple of years. I, surprisingly, am content on living the city life, where river wants to move up to the suburbs because he needs a lawn to mow. Seeing how happy the dogs were back in buffalo made me finally agree with River. If i am this sad about my dogs growing up without a yard and space to run around, imagine how i will feel when were talking about my kids. End of discussion, they need a yard to run around in and the city just won't cut it. In typical Buffalo baseball fashion, the games were rained out and they were forces to play a triple header on saturday. I didn't even know that existed, but we sat there in the freezing cold and rain to support our buffalo bulls who are headed to the MAC tournament this week, Its very cute to me how much River lit up this weekend watching the games. I know he misses it, but he won't admit just how much. He is such a competitive person that not having it is making him stir crazy. I hope he is able to channel some of that into our kickball and softball leagues this summer.  None of this travel would have been possible if it wasn't for the amazing family i nanny for, They are so flexible to me and my schedule and it really makes the dynamic of the job/relationship work. I appreciate them letting me go visit my family more than they know. 

Throughout the month my health has been pretty up and down. I started the new treatment and am waiting with fingers crossed for it to work. I have now taken two dosages of that. I also decided to completely stop taking the steroids as i feel that the side effects outweigh the benefit at this point. My major issues has been anxiety. I am beyond anxious about going anywhere for the fear that i will need to use the bathroom and won't have access to one. In buffalo this wouldn't be a problem, but in NYC no one has bathrooms that you can use. This causes major stress to someone like me because i could be out on a walk and need to go and not have enough time to make it all the way home, I want to work to mandate that all restaurants have bathrooms and that they have to let someone with a medical condition use them, 

Two families very close to me lost their fathers this past month and my heart aches for them, My cousins in California; drew, bijan, and kayhan lost their father after a difficult struffle. As hard as dealing with crohn;s is, someone always has it worse off than you. My friend Christian also lost his father to cancer this month. I think about them often and they will never be forgotten. 

Bottom line of this post, be grateful for what you have, be it your family or your health, because it could all be gone tomorrow. We need to love and support anyone who is going through a difficult time for whatever reason and just let them know your here for them.

Our summer of traveling doesn't end here, however. The second week of June I'm heading West to visit my cousins and their families. In July, for our anniversary, River and I have rented a cabin in the mountains where we plan to relax, camp, fish, and swim. 

Lots to look forward to in life. Lots.

Until next time, C

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