Friday, November 14, 2014

Waking up from Surgery

Last time on AJ's Alien Within.... 

    I found myself being escorted into a sterile operating room with lots of official looking people scurrying around, cloaked & disguised behind their medical garb. I looked around and realized there was absolutely no way I could get past these people and escape. I reminded myself that I had signed up and volunteered for this adventure though. 

    I swallowed hard and let them help me up onto the operating table and was instructed to stretch my arms out onto the little "side tables" on either side of me. I closed my eyes anticipating the pinches from the IV's being inserted and tried to think of happy times in my life. I tried to fight back the fear, but before I could even focus on one good memory, I was swept into darkness and nothing. 

    My next clearest memory is a bit jumbled. My eyelids felt like two heavy doors made of cement that I couldn't muster to lift. I kept feeling the urge to vomit. Biting this feeling back, I fluttered my lids trying to take the scene in. I was surrounded by a large group of people working over me while I laid flat on my back. Their hands moved deftly and quickly, adjusting and removing things that I could not see. I couldn't find my words at first. Feeling slightly panicked, a kind woman's voice kept rubbing my arm and reassured me that all was ok. 
    Things were becoming clearer and more real but if I didn't know better, I would have guessed I was part of some weird alien abduction experiment. The sights, sounds and smells seemed so foreign and sterile that my brain was having problems processing it all and putting it into some recognizable form. 
That was probably the anesthesia though. 

    Finally, a voice came out of my throat that didn't even sound like mine. 
It was tiny and rough, like I'd been screaming for hours but I managed to finally string words together. I asked if someone could please just take all this stuff off me because I was overheated and was gonna start hurling if they didn't. I must have said it over and over because they started reassuring me that it was all normal. Someone kept rubbing my legs and I realized it wasn't a person but some kind of futuristic compression boots I'd been placed in. 

   Having no concept of time, I have the vaguest recollection of my family coming in to see me. They took a photo that I don't like to look at. I'm giving the thumbs up and look more unlike myself than I have ever looked in my life. I would have never authorized this photo, but since my brother was stuck 600 miles away, he wanted visual assurance that I was ok. 
( Note to self, I must insist to all involved that that photo is deleted )

Come back soon to AJ's Alien Within Blog. Next up I discuss my rather surprisingly short hospital stay after having bowel resection surgery.....


Friday, October 31, 2014

Surgery Day ...

     Volcano day, I mean surgery day, was scheduled early for me on October 9th.  
I was ready as my family and I made our journey from southern New Jersey to New York City. I spent the ride admiring the sun rise come up on the urban industrial landscape as we zipped down the NJ Turnpike amongst the daily commuters. 
     I've gone into the city many times in my life time but this trip was filled with all different kinds of hopes and dreams. It truly is the city of dreams. Many dream of bright lights and busy street but my mind was thinking of all the things I had missed out on the past few years. Dreaming that today would be the turning point in all of this. An opportunity to start a new. 

    I had spent the night before tossing and turning. Thinking over all the things I should have eaten before midnight when I had the chance. Wondering if there was anything I had forgotten to pack or do before I was admitted to the hospital. 

     It was the sort of anxious feeling you have before you go on that long trip but instead of the excitement of Disney World, it was the anticipation of what this surgery might bring. How it could possible change my life and the way I've been living. Wondering if this surgery that I had put off for so many years might actually be the right choice finally. Basically, I was mentally getting my game face on for the toughest battle yet against the alien in my stomach.

No Escaping Now ...

     Upon arrival and checking in, this nifty GPS Tracking was attached to my wrist. Actually it's a patient ID bracelet to let everyone know I who I was and why I was here. I still felt a bit like a trapped animal when it was strapped on to me despite being there voluntarily. 

    Before I could even ponder any jokes on my newly acquired restaurant seating buzzer, I was called back into a private seating area with all the other cool surgical patients. The staff than ushered me into a little room and handed me a bundle of paper cloths and a plastic bag. I was instructed to strip, place all my belongings in the bag and get dressed in the paper cloths they provided. 

Fun way to start your morning, let me tell you.

One Size Does Not Fit All

        As you can see above, one size does not fit all. I was able to model this gem for my family and spend a little time with them. Than the staff allowed my husband to come with me as I was taken to the patient waiting area. This was a room made of many smaller curtained rooms filled with patients waiting for their turn. I was brought over to my very own wheeled bed and instructed to get in like a small child. 

    This is where time seemed to stop completely for me. If I knew any better, I would have thought that time was actually going backwards rather than forwards. Hubby and I cracked jokes to pass the time and took in the hustle and bustle of the nurses, interns and doctors rushing around. I met with my anesthesiologist and some of the surgical staff. They asked me pertinent information to keep me comfortable during my surgery. And I was flashed by an old man as he got onto his very own wheel bed. It was quite the morning.

     Finally my name was called and I said my good-byes to my husband as I was wheeled into a brightly lit operating room by a kind nurse. The staff helped me onto the surgical table and stretched out my arms onto boards on either side of the table. I closed my eyes as they started to place the IV's and......

Come back to read what its like waking up from bowel resection surgery.

Mount Sinai Hospital
What is Crohn's Disease ?

Thursday, October 30, 2014

I Rocked My Surgery !!!

    Today is officially three weeks since I had my bowel resection surgery at Mount Sinai Hospital. I cannot even begin to tell you how very different my life is in such a short amount of time. Of course I'm gonna try though in the next few entries.

    First off, let me just say ... 

I rocked that surgery !!!

     The photo of me that you see above is the next day after my surgery. 
I am in my hospital bed wearing the fashionable gown that they provided for me to wear. I have to say that I was feeling pretty darn good. Between the pain medication and the great care that I was getting from the staff at Mount Sinai hospital in New York City, I felt like a rock star. 

     Please keep checking back in the next few days as I start posting my new series. This will detail from my actual surgery day to my fabulous current state of life. 
I promise lots and lots of photos that I took to document it all.

See you soon. 

New & Improved !!!

Wednesday, October 8, 2014

Don't feed after midnight ...

     Tomorrow is my day to slay the alien at Mount Sinai Hospital in New York City. According to their instructions, I am not allowed to eat or drink after midnight. I wonder if I'll turn into a gremlin if I do ? 

     Anyway, back to slaying that alien in my gut tomorrow. My bags are packed and I'm ready to go. Now I'm just trying to actually sit still for a moment long enough to write. I am finding it difficult though, but in a good way. 

    I have been inundated with visits, phone calls, texts and e-mails wishing me well tomorrow. I am overwhelmed with the outpouring of love and support I have received from everyone in my life. It is truly a wonderful thing to know how many wonderful people have your back in a time of need. 

    Now all I have to do is let my doctors do their job and I'll do mine. I firmly believe that I have made the right decision and done so in my own terms. I am ready for change. I am ready to have my life back. 

Before I sign off from the blog for a few days, I'd like to talk about the few things that I've packed to help make my hospital stay more comfortable.

PJ's & Slippers

    First and foremost, are of course pajamas and slippers. 
When I found out I was having surgery, I asked a few people who've been through this as to what they thought were the most important things to pack. Everyone said comfortable and loose fitting clothing but also slippers or slip on shoes. They explained that the act of bending over to put socks or shoes on would be difficult after surgery. Shoes are needed though. Walking around is a crucial step to recover with this surgery as it gets your bowel's moving again. 

     My mantra over the next few days is to walk as soon as they try to get me up the first time. And than keep doing it. I want to be doing laps around the hospital ward floor. Even if I'm shuffling. 

    With this all in mind, I've packed a few comfy older pairs of pj's as well as a terry cloth robe. I treated myself to the softest flannel drawstring pajama bottoms I could find and tried to find a comfortable pair of slippers. I think I have found them :-)


    Probably almost as important as cloths, is my electronics. These beautiful technological gadget's will hopefully keep me occupied. I've brought along my kindle loaded with some lovely new books gifted by friends as well as my iPad to watch TV and movies with. I've brought along a set of headphones as well as one of those new nifty bluetooth wireless speakers that have surprisingly good sound. Overall, I think I have the entertainment portion of this excursion covered.

Mug & Tea

Lastly I've packed myself a giant mug to have cups of tea with as well as my own tea bags. If you know me well, you know that I am quite particular about my tea. This will most likely be my biggest comfort as I will be on a liquids only diet the first few days. 

So cheers to you.
I am off to slay the alien at 10:30 tomorrow morning. 

Tuesday, October 7, 2014

Warp Speed ahead...

     For the second time in less than a week, this wee little pixie found herself commuting back into NYC to meet for yet another consultation appointment on my resident alien in my gut. This would be a first for me though. Instead of meeting again with my GI Doctor George, I would be meeting my surgeon face to face. 

     So feeling like a seasoned commuter, I hopped onto NJ Mass Transit with my Kindle in hand to start my long travels into NYC. Surprisingly, after just a few stops, a familiar face boarded the train. It was an old co-worker named Veronica. We hadn't seen each other in years since the company we both worked for went bankrupt. We spent the rest of the ride talking away happily like two little school girls. Most likely annoying those around us as we talked way too much.

    When we arrived in Penn Station, we hugged good-bye and wished each other luck on our day's adventures. I am truly grateful for running into Veronica that day. She was able to take my mind off of my looming appointment by providing a much needed distraction. Thank you sweet Veronica. You were just the angel I needed.

     On my way again, I found my needed subway station and rode across town. Proud of myself that I didn't ended up in the Bronx, I emerged nearby to my appointment on 69th Street and Madison Avenue. Despite the misty weather I had about an hour before my appointment. So I decided to walk off my nervous energy and do some window shopping with all of the amazing expensive Madison Avenue shops in the area. 

     As I wandered around. I found to my delight a french bakery with the most divine croissants and delightful macarons that I could not resist. Each and every sinfully delicious bite in my mouth tasted like a little bit of heavenly sunshine. It was well worth the price.

    With my stomach now full of french treats, I made my way into the waiting room of my surgeon's office. Although the wait wasn't rather long, the minutes seemed to tick by slowly. I tried to read my book but found that I just kept reading the same page over and over. Finally my name was announced and I was on my way into the inner sanctum of the man will change my life hopefully. 

     Doctor Chessin was quite cordial and friendly with a firm and steady handshake. ( Steady is very important ) After a few pleasantries, he jumped right into my medical records and posed a lot of the same questions that Doctor George did. Once we were all the same page, we got down to the details of my surgery.

        Doctor Chessin explained again that despite all the medicines available now to treat Crohn's Disease, no medication would be able to rid me of my scar tissue and strictures in my gut that have been causing me pain. The only option at this point, is surgical intervention. This type of surgical intervention is of course much preferred as I am the one making the choice to do it. I'd rather it this way, in the hands of surgeon that I trust whole heartedly than an emergency situation with my local hospital.

     Luckily this procedure ( a resection of the terminal ileum ) can be done laparoscopically with a minimal amount of cuts needing to be made in the abdomen.  The surgery is supposed to be about 90 minutes long and there will be three incisions made.  I'll have a small incision on my pelvic bone that will barely be visible and than a second slighter larger one on my hip that will be about 5mm. The last incision by my belly button will be around 1-3 inches long. The length of this one, will be determined by how dilated my gut is when he removes the one section of my bowel. 

     For such a short surgery, Doctor Chessin will be doing quite a bit while I'm under in dreamland. He will remove the diseased section of my gut and than reattach my small intestine to my large intestine. At the same time he will also remove my cecum and appendix since the blood flow will be cut off from these two appendages. 

    The only unknown with the surgery is what type of adhesions the surgeon may find that my alien has caused. I feel I am in good hands though with Doctor Chessin. He assured me just like Doctor George, that no matter what happened during the surgery, he's seen it all and I would be ok. 

    Feeling scared but confident that I was making the right choice, my surgeon walked me up to his scheduling department to get me scheduled for my surgery. To my utter surprise, his assistant penciled me in for October 9th at Mount Sinai Hospital in New York City !!!

    Come back tomorrow as I continue my tale and discuss what I'm packing to make my stay in the hospital more comfortable. 

    Warp Speed Ahead !


Monday, October 6, 2014

New York, New York

    Yesterday we ended the latest installment of life with my alien as I prepped to face my biggest battle yet to date ... the dreaded word surgery. 

    That particular word used in every language is enough to evoke thoughts of nervousness and uncertainty. Throw in the fact that most people with crohns fight to avoid surgery at all costs and it's a stressful combination. 

    Luckily, I am located within a few hours of New York City where some of the best GI Doctors on the East Coast are located. My local New Jersey GI doctor has been treating me for many years. Unfortunately after this summer's horrible flare, he felt that my case had come to point where surgery was called for and that my particularly difficult case would be best handled by doctors at Mount Sinai Hospital in New York City.

    With recommendations in hand and things moving at a relatively fast pace, I found myself sitting across from a very prestigious GI Doctor in his office on the upper west side of the city two weeks later. 

    Doctor George put me at ease quite quickly. I was amazed at the deftness of his assessment of my case as he reviewed over ten years of medical records with me. For the first time in my life, I felt as if this doctor could see all the pieces of my medical puzzle put together and finally gave me a clear and concise information on my disease. 

    Hearing the words surgery coming from this new doctors mouth was a bit of a disappointment. I had hope that perhaps we could try some new medication but in my heart I knew it had been coming to this. When you have constant pain, like I've had every day, you just know. I also know though, just as this new doctor told me, no matter what pill I take, it is not going to melt away my scar tissue. The only real way to get rid of it is to remove it. 

  So with this confirmation, my newest GI doctor recommended me to two different surgeons. Each he said were people that he worked closely with at Mount Sinai Hospital. He also said that no matter what happened during the surgery, they would each not be surprised by anything that they found or anything that happened. Lastly he told me, that if it was his child, that this is who he would send them to. 

   With these comforting words and recommendations in hand, I was off like the white rabbit with a very important date to keep. Come back tomorrow, when I talk about going to meet with my surgeon. 

Sunday, October 5, 2014

The Longest Summer


    Before I begin my tale, let me say I did have one extraordinary sun drenched day on our local beach where I was able to glimpse the rarest of things .... a giraffe. Granted, it was just a toy giraffe, but it lead to the fabulous photo above that always makes me smile when I look at it. 

     School is back in session for a few weeks now and that beautiful cool fall season is finally upon us. Usually around this time of year people discuss amongst themselves how they spent their summer. I'm a little late but fighting my pesky alien has been a bit overwhelming & exhausting lately. 
     So unlike most, who spent their summer experiencing sun drenched activities, I was entrenched in  a battle. A fiery battle against one of the worst flares my alien has thrown at me in all the years we have been established against each other.

     This battle was different then others we've had in our checkered past together. 
Obstructions, when you have one in my experience, feel like the alien has a sharp pointy knife tucked up into your gut. A sharp pointy knife that they are twisting and turning while you are violently retching. 
    The few times I've had this scenario, I know to rush to the Emergency Room ASAP. It is a very dangerous situation and not to be taken lightly. I barely escaped having emergency surgery both times I was admitted for obstructions. 

     This flare however felt completely different. 
It felt as if, somehow, over night, my gut had swollen to comically watermelon size proportions. 
It was hot and tender to the touch. Every vibration felt as if someone was shaking me painfully up and down. The act of someone sitting next to me on the couch or bed, was enough to bring me to tears just by the sheer vibration. 

    Walking had become painful. More than a few steps and I was gasping in pain, holding my gut. I found that to walk comfortably, I was holding my stomach, like a pregnant woman. This holding of my gut, seemed to minimize the pain slightly as I walked. I guess it steadied my swollen insides from the motions of movement. 

     If I was on my feet for more than ten minutes, I found that the pain was not just in my abdomen anymore but now reaching around my back as well. My abdomen was so swollen from my intestines that I wasn't able to rely on my core muscles. It's amazing how much you need core muscles. They are needed for walking, stabilizing yourself and of course picking things up. Since I wasn't really able to use them, I think my back muscles were doing lots of extra work. That overwork was causing my back pain and strain. But that's just a guess on my part. 

     Somehow, I managed to stay out of being admitted to the hospital out of stubbornness and sheer will. Luckily my longtime GI doctor was in agreement that I would get better rest and care at home as long as I was not vomiting or obstructed. If any of those two things occurred I was to call him ASAP and hightail it to the ER most likely. 

     He was concerned though that I might have a few issues going on like an abscess or perforation of my gut of even fistulas. These are all serious side effects that can occurs when dealing with Crohn's especially during a bad flare up. So he sent me for my normal blood tests but a CT Scan as well. At the same time he prescribed me a strong course of steroids and two sets of antibiotics to take at the same time. 

   The medications got the swelling down and lowered my pain a bit. Unfortunately, I was still experiencing the same side pain that I've dealt with constantly for the past few years. The CT Scan revealed the reason why.

     I have strictures, which are a thickening of the bowel walls as well as scar tissue. At the same time, the scar tissue has formed a permanent partial blockage in my intestine. Due to this partial blockage, my gut is dilating before the blockage, letting all my food accumulate until it can pass. A pretty painful scenario to deal with each and every time you eat. 

     With all this information in hand, my long time GI Doctor said one of the most dreaded words among those suffering with Crohns ….. Surgery.

Come back tomorrow as I continue my tale on the path to surgery and what it is like to prepare physically and mentally for one.