Big breath...

Today has been one of the most insightful days of my life. I sit here in my hospital bed at Mt. Sinai full of more emotions than I thought possible for one small human to feel. A little pre cursor this post will contain some TMI medical info for those who are uncomfortable…For those of you who have been checking in with my last couple of blog posts, I have been struggling through one of the worst crohn’s flare-ups to date. I was admitted to the hospital last week and discharged in order to get my entyvio infusion. I knew when I left the hospital I wasn’t ready to go as I had yet to feel any relief from my symptoms but unfortunately this disease is a guessing game with no right answer and we decided the infusion was the best option I had. Upon getting home from the hospital Saturday my body just continued into a downward spiral to the point I wasn’t able to swallow a sip of water or leave my bed to go to the bathroom. Getting hit by a bus would pretty much sum up how I felt. I tried toughing it out for a couple of days in the hopes that I was just having a rough hospital to home transition. I also had developed a new abscess in my arm pit which was painful and just in general strange to appear overnight. By Monday, it was very evident that I was progressing downhill and needed to be re-admitted. I took a couple of hours to get some things together (including packing as much as I did for my honeymoon) and after river got out of work we once again trekked it to the ER. I was in the ER from 8 PM-7AM alone and unable to sleep. River stayed as late as he could and tried to get me comfortable but the dogs needed him and one of us needed to get a good nights sleep. That was the first official sleepless night I have ever pulled and I would recommend it to no one. The only upside to that entire disastrous night was the fact that as the light at the end of the tunnel I was given a private room. Hallelujah. The following day was one of the most frustrating days of my life.  River stayed at home to study for his CPA and spend time with the dogs and was planning on coming in the evening to spend it with me. All day long I felt invisible. No doctor came to visit me and my nurse was non-existent. I don’t really think anyone knew why I was here or what was happening at that point but the care I received was insane. I was complaining of pain all day that despite the IV pain meds I was receiving was not going away. Im talking cant open your eyes screaming pain. I then began to feel tingly on my left side and said I couldn’t feel my fingers. This was pretty much irrelevant to the nurse until river walked in the door and said my entire arm was black and blue and the size of a watermelon. My IV had not been going into a vein for who knows how long, but into my arm. It was and still 3 days later is extremely painful.

The next day was more eventful in the first 5 minutes I woke up than the first day. I finally met with my doctors for the week and came up with a gameplan. Unfortunately, my GI doctor and surgeon were both on vacation this entire week, so I was seeing members of their staff which was fine, just ironic and my luck. Basically the same thing weve  been attempting which is IV steroids in hopes the entyvio starts working. To me, this is a bandaid on a bullet wound…Within the first two days of being here my face has beyond tripled in steroid “moon face” and the amount of water weight I have put on from the steroids makes me look about 6 months pregnant. Its uncomfortable and painful to say the very least. Not something I was thrilled about my any means.

Some new symptoms had arisen when I came here, things that just medically were unusual for me. Being unable to pass gas or have a bowel movement despite eating and a general feeling that I just didn’t have much muscle control of my bottom as usual. The concern with this was a potential obstruction. They did a CT scan and found there was no obstruction so the next test they wanted to perform this morning was a scope in which they could see my rectum and colon and compare It to my last scope before I started the medication. This is a procedure done under sedation so I didn’t feel anything. Unfortunately and much to everyones surprise they were not even able to perform the procedure because I had an anal stricture, or extreme narrowing. This is a rare but not surprising side affect of the crohns. It explained a lot as to why I wasn’t able to control my anal muscles as well as why nothing was able to pass. The treatment for this was a small surgical procedure in which they dilated a balloon in my anus to help the muscles expand.  During this procedure the GI team was also able to perform the test they wanted. I woke up in the recovery room, high as a kite, and waited for answers.

The answer walked through my door at 7:00 PM on July 29. July 29 is six years to the day that I found out about this disease. 6 years of what now feels like a prison term. I knew the news the second the doctor sat on my bed. “Things don’t look good”. The very doctors who were doing everything they could to try to get my body to hold up enough to let this new drug they themselves designed looked me in the face and said it wasn’t good and it wasn’t working. They then told me they were recommending me for surgery as my only option. My heart sank and I lost my breathe instantly. I felt sad. I felt scared. I felt heartbroken. But then I felt relief. I felt joy. I felt vindication. I felt like someone was offering me my LIFE back. In the upcoming week I will be undergoing a proctocolectomy in which I will have my colon and my rectum taken out of my body. I will wear a colostomy bag for the rest of my life.

Take a second and digest that.

I have.

And I am thrilled. I feel like this is the solution to a new quality of life that I have never gotten to experience because this shadow called crohn’s disease has followed me around for the past 6+ years. I have done a significant amount of research on this surgery as well as belonging to many support groups in which most people have said that this surgery SAVED THEIR LIVES.  This is what I ask of all of you. Research the surgery. And please do so with an open mind and a heavy heart. In society it is often not talked about and looked down on as gross. Lets change that, I know I will and I am asking all of you to help me. This is not a pity party, this is the first day of the start of my life and I CANNOT wait to begin living it with those that I love.

More to come in the next couple of days as I get more information, I promise. I don’t know where exactly I found this strength, but I know I will need it as I begin this new journey of my life. Kiss those you love. Life is short and sweet and too precious. Im going to sleep with a smile on my face for tomorrow and my husband holding my hand.

Until next time, C

the clock has started...

I write this post from my very uncomfortable bed at Mt. Sinai in New York City. I was admitted to the hospital after seeing my doctor twice in a week with complaints of major abdominal pain,loss of appetite, extreme weight loss, nausea, and zero energy on top of lists of other things. We all agreed that being admitted would give me easier access to tests, pain control, and hopefully answers. 

To rewind about a month...this all started when a reoccurring abscess began acting up and giving me much pain and problems. I was able to drain the abscess by myself (sorry if thats TMI) but it was essentially the start of bigger flare problems to come, as usual. I can often tell a couple days or a week before my body is going into a flare. It just feels different, its hard to explain. When this happens i try to take every precaution i can to try to alleviate the problems before they get out of control but sometimes its just not possible. I began getting high fevers of around 102 every night and just felt overall beat down. I was so looking forward to kyra and my mom coming last week and i think the adrenaline of that was able to get me through the week without falling apart. The first day they were here i snuck an appointment in with my doctor to see if any bloodwork could reveal a little better what was going on inside. It was so beyond nice to see the two of them and even though i wasn't able to do nearly anything, i hope they had fun seeing some sights in the city. It was nice River was able to take them around a little bit because of some flexibility with work and they would come home and relax at night. Its really hard being so far away from the people that you love, and sometimes just seeing them is the best medicine there is. They were able to go to some of my favorite places including the brooklyn bridge & grimaldis, MOMA, Rockafellar center, Chelsea Market & high line, and the new 9/11 museum which was absolutely breathtaking. I was able to truck to that for a little bit before totally falling apart, but i will most certainly be going back several times in order to take it all in. My mom got me a membership so we can go anytime. Talk about one of the most emotional and peaceful places on earth...

Anyways Kyra and mom left and the day left i felt pretty good, i was able to go out to brunch with them and walk them to the train and then all of the sudden that night i literally hit a wall. Beyond pain, beyond bloated, couldn't sleep and none of my normal remedies could offer any soft of relief. This is when i knew i needed to see my doctor again and essentially thought i needed to be admitted to get the kind of care and relief i just wasn't able to give myself at home. Im not typically someone who is bothered by a lot of pain because i live my everyday life in some sort of pain or another, however a flare is a whole different ball game and sometimes pain medication needs to be taken. The doctor revealed that my blood work essentially showed what we already knew which i was fighting some major inflammation and infection inside and that was that, i headed down to the ER got a CT scan to rule out an obstruction and was admitted. 

Since I've been here my doctors have been great and its nice that my main GI doctor does in patient rounds so i actually get contact with him once a day and his colleagues several times a day. Essentially right now we are fighting a clock for this new drug vedolizumab (entyvio). I have currently have 2 infusions and was due monday for a third over a 6 week period of time. The vedo is so new and doesnt have much info out there about it but it is shown that it takes 10 weeks to work. Not 9, not 11. By the 10th week if you don't feel progress, changes are it isn't working. The struggle for me at this point is making it to that 10 week mark with a quality of life. In the hospital, they have against all my complaints re started me on IV prednisone and eventually oral prednisone for going home and getting me through the next month or so. This presents another challenge with the ten week marker because we need to be able to deceifer between which drug is actually working.  At 10 weeks i will begin to wean off the prednisone in hopes that i still feel ok and the vedo is doing its job. In the unfortunate case that it doesn't work, i have been in contact with a surgeon everyday that i have been here and have a consult scheduled with him around the 10 week mark to make some decisions if they need to be made. It has been beyond helpful to have the contact with him and just be able to prepare myself for what could be potentially to come, which is life changing.

Ugh. So now a whole different struggle we are facing is the fact that i am late for my vedolizumab infusion, which you would figure, I'm in the hospital, its easy, get it. However, just because this drug is so new and crazy and expensive, they will not do it as an inpatient procedure, only outpatient meaning i have to be discharged before i can get it. This is a difficult situation because I'm in the hospital because i feel awful, but the vedo is what in the long term will help me not feel that way. The doctors essentially want me to be discharged earlier than i technically should because they feel its best for me to try to get the infusion tomorrow. The plan will hopefully be discharged tomorrow morning and to get the infusion in the afternoon. This is pending I'm able to tolerate oral pain meds instead of IV which i haven't yet been able to do, so who knows.

Ive gotten so much love since being admitted via texts, Facebook, email, instagram, and visitors and all are so beyond appreciated and make this whole experience tolerable. River has been here as much as he can, but i need to know my fuzzy boys at home are taken care of too, so Ive been kicking him out to see them as much as he can. I even got a visit yesterday from my favorite little 7 MONTH OLD buddy jonah and his lovely mama. It was so special that they care enough about me to visit me and it made me so happy to see them. 

So...the clock is ticking. Only time will tell whats next i suppose. Thanks for your continued love and support and awareness for this awful disease!

Until next time, C

The past month has been a little discouraging to say the least. I am always trying to keep a positive outlook on everything and try to recognize that there is always someone who has it worse off than me but its been especially hard to do that recently. In the past few weeks I have taken drastic downhill turns, which is beyond frustrating considering i am supposed to be getting better everyday. At my last infusion the doctor asked me if i was feeling any better and my response was "no not really, worse actually" and her response was a look of shock and "oh...all my other patients at this point in the therapy are feeling WORLDS better". This isn't my normal doctor, just the one who is able to infuse the entyvio. I was shocked by her, in my opinion, heartless response and i spent the next hour+ of my infusion holding back tears because I, once again, am afraid this treatment isn't going to work for me. I was diagnosed August 28, 2008. Six years. It has been almost six years suffering with this debilitating disease and I have never felt the feeling of remission. Its been doctor after doctor treatment after treatment and the never ending "we will find something for you". Well, we haven't. And at this point i am beginning to feel extremely beaten down physically and emotionally. 

not much else to say right now, pity party of one...

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