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...