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 ?
CCFA

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 :-)

Electronics 

    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. 

CCFA: What is Crohns Disease

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. 

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.

Water, water, everywhere …

Water, water, everywhere in paradise ... 

      I am always trying to drink enough water to combat the dreaded side effect of dehydration that crohn’s disease tends to create through it’s symptoms. It doesn’t help that my doctor has been chucking multiple types of antibiotics,steroids and such my way. I've been using the combination to combat the dreaded onslaught that the alien in my gut has been waging  all summer long. All of which, mind you, say drink lots and lots of fluids.

So water, water everywhere.

     In taking lots of water does have it’s benefits like the handy dandy informative photo above kindly explains.

     It can get a wee bit boring at times though when you have to consume as much as I do. So I try to vary my ways. I’ve listed below a few basic ingredients that I’m adding to my daily water regime that also have added medicinal health benefits. 

Cranberries aren’t just for Turkeys 

    There’s been some promising studies that state cranberries when consumed can act as a barrier against bacteria. Everyone’s heard the one about drinking cranberries for UTI’s for this exact reason but it can also apply to bacteria that can effect the stomach & intestine linings. 

    The healthiest way to consume cranberries is raw but can be quite tart in this manner. Cranberry concentrate on the other hand while tart, can be diluted to your own tastes. I recommend using the more natural kind though with the least amount of ingredients and without sugar. It  will be a little expensive but will keep for a while in the fridge.

Mint 

    Mint was originally used as medicinal herb brewed to help treat stomachaches and ails. Typically the leaves are dried and than steeped into a tea when used for these purposes. Added a few fresh mint leaves though to water, is said to help with the feeling of upset stomach and is quite refreshing to the palette. 

Lemon

    Everyone knows that you make lemonade out of lemons. But, did you know that the low pH of lemon juice makes it antibacterial. 

Lemon juice when consumed can increase your amount of citrate levels which in turn inhibit the regrowth of kidney stones. many doctors recommend the sugar free lemonade diet when dealing with kidney stones for this reason. 

My latest concoction is pictured below …

Cranberry LeMint Refresher

Directions: 

Pour ingredients over ice and stir well. Honey or agave may be added if the drink is too tart.

Ingredients:

•         dash of cranberry juice concentrate without added sugar
•         one frozen lemon slice
•         fresh mint leaves
•         water  & ice of course 

Cat scans sadly don't involve cats

 

     Cat scans, other wise known in the medical world as CT scans, sadly, do not involve any sort of cats. I mean, it would be quite amusing to just swipe a cat over your body in mid air a few times but it's probably not going to give doctors the answers they were after either.

    What they do involve though is something that looks a bit like a whirling time machine. This whirling and chunking machine takes a whole lotta x-rays from multiple angles and combines them into a cross sectional picture of your soft tissue and bones inside your body.

Why I Need To Get Scanned

    For me, this test was to look at my intestinal system for abscesses, fistulas or blockages currently going on as well as scar tissue from inflammation. I've been having a lot of localized pain and the doctor wanted to see if there had been any changes since my last scan about a year ago.

Outpatient Care Rocks !

   The scan, as mentioned above is one that I've had several times before. Luckily this one was by appointment at the hospital rather than me coming into the ER with extreme pain. I was pleasantly surprised that, this time around I had many "fun" flavors of barium to pick from instead of the nasty gunk I've had in the ER. I voiced my choice of banana and waited for my medical milkshake to appear.

  Since, I had an appointment it all moved pretty swiftly. I got one of those nifty hospital bands with all my impertinent patient info and than was escorted back to the waiting room to drink my "banana" shake.

   I drank both bottles rather quickly. I've found with previous experiences, its just best to chug the stuff down and get it over with. The longer you wait, the more it tastes like warm eggnog. Once you've ingested the lovely concoction that will make your insides visible on the scan, there is nothing left to do but wait. The drink has to make it's way through your system before you can actually go in for the test.

So you wait.  Sadly, you will not glow in the dark after consumption. I checked when I flicked the lights off in the bathroom. No glow. No super powers. Darn.

    Fortunately, when you are an outpatient at a hospital though, they actually allow you to wander away. You just need to promise to be back in time for the allotted scan. I promised like a 100 times because there was no way I was gonna drink that concoction again.

At least not that day.

In the Vortex 

    Forty-five minutes later, I was back from sitting in the hospital's lovely garden reading my kindle and ready to rock this test. Just like before, things moved swiftly. I was ushered into a back room where the machine was with a technician and nurse. They helped me up onto the machine bed and set up an IV line to run the contrast.

    Within a few minutes they had everything ready and the very kind nurse started the machine and warned me that she was about to run the contrast.

Why did she warn me ?

    Well, the contrast that is pushed through your veins just as the test starts gives you this sudden intense warm sensation throughout your body. It also makes you feel like you're peeing your pants. No, really. You don't actually pee your pants. But it's a really good imitation of the same sensation.

     After that though, the test isn't so bad. The machine hums and whirls around your mid section while you lay on a metal bed that gives off the sensation of floating in air. Its rather quick and not very loud but you can't bring music in with you like an mp3 player. So you are left there with just your thoughts and the sound of the machine working it's magic.

   I just closed my eyes while it went on and pretended that I was in the TARDIS swirling around in a time vortex. Sadly when it was over, no Time Lord Doctor Who's appeared.

( I wanted Tennant or Troughton to appear but would have accepted Smith )
The staff though that helped that day were all fabulous.

Results :

  I have an appointment in September to discuss the next step of my care.

  For me, the scans showed that I have scar tissue and that's probably the cause of my daily pain.
My doctor wants to refer my case to Mount Sinai Hospital where they are more able to deal with difficult cases of crohn's disease. I am sad that my doctor can't help me further but hope that perhaps I can find a treatment that does not require surgery at this time.

Until than I ponder the possibilities and do my usual tricks to keep my alien at bay and happy within me. My next post will delve into these ways.

Steroids - Not just for body builders

     The use of the word steroids when brought up, tends to conjure colorful caricatures of beefed up body builders and super human athletes in today's popular culture. Steroids though, are not just for people looking to achieve a competitive edge. They play an integral part of treatment when dealing with many kinds of chronic illnesses like Crohn's disease.

     That integral time has come for me. I've been prescribed a slightly hefty dose of prednisone ( 60 mg ) daily to try and reign my alien into some sort of submission. It does come with side effects though, as does any medication. So I'd like to discuss today the good, the bad & the ugly.

The Good

     Everyone wants to be a good host, but when your alien roommate starts attacking you, its time to build walls. Steroids are great way to build up those barriers. They can let your body heal when dealing with a difficult flare.

     The way it all works is through suppression. By suppressing the immune system with high does of corticosteroids, you can suppress the inflammation that's currently occurring. Through this course of treatment, many patients find they can achieve significant benefits with a reduced risk of problems. The length of the treatment though varies.

The Bad

     I've been on my current course of steroids for 18 days now and I'm seeing improvement but I'm starting to feel its side effects. Steroids have a tendency to make you hyper. I call it the energizer bunny syndrome.

     I can't sit still. Rest is probably the best thing, but my mind & body are whirling at full warp speed. It's like downing multiple espressos in a row and noticing all the shiny things in the room. And it's like this all day. That bunny just keeps going and going and going.

     Another dreaded side effect is what many people call "moonface". It's an affectionate term used to describe how one's own face tends to look after battling the alien while on the 'roids. So the longer I'm on it, the more I tend to look like the fourth member of the chipmunks.

     The other bad side effect of being on this lovely medication, is the tendency to want to eat everything in sight. I haven't gotten to this point. Yet. Remind me not to eat everything that isn't nailed down when I get there. 

Thanks ;-)

The Ugly

     So remember those stereotypes ? The angry body-builders with 'roid rage ? There's some truth to it. The weight gain and moon face side effects are typically temporary and will go away with time and exercise. Usually once medication has been reduced or ended luckily.

     The mood swings on the other hand are much harder to control. The alien is at the helm, so to speak. You are so amped and ramped up, that everything just jumbles about. Eventually a valve has to blow.

     So when it does, I have a little talk with my Alien friend. I put him in a corner for a time out and let him think about how's he's been bad.

     Tomorrow I have fun filled adventure planned of getting cat-scanned ( CT ) at the hospital.

I've had this test before. I can assure it does NOT entail picking up a cat by its backside & repeatedly scanning it over one's self.

Come back to see how it all goes.

Alien “Sometimes the scariest things come from within”

ALIEN ( 1979 )

     In 1979 Ridley Scott released a terrifying and iconic science fiction film known as the movie Alien. The film’s title refers to the exceedingly aggressive extraterrestrial creature that stalks and kills the members of a space ship. This film has engrossed millions of fans and spawned countless sequels over the years since it’s inception 35 years ago. As the movie’s tag line says … “No one can hear you scream in space”.

     Of all the terrifying scenes that the first Alien movie brought, the one that has stayed etched in many fans minds, is that particular part with poor John Hurt’s character. All the man wants is some decent earth food but it doesn’t quite work out for him. One minute, he’s got a bit of indigestion, the next, he’s writhing around in utter agony with an alien baby bursting forth from his chest. It’s the stuff of full-fledged nightmares folks.  

     That sequence always stayed with me, locked in the back of my mind. Filed deep away for later reference. Throughout the years though, from time to time, I would be plagued with stomach issues and pain. As my issues came back again and again, that particular movie moment would float through my mind. It was the only visual descriptive that I could conjure up to express how I felt. Henceforth, my affectionate nickname for the beast. My alien within. 

     Sharing a body with a resident crohn’s alien, at times, can be trying, but I’d rather laugh over it than cry. It’s rather akin to having a room mate that you can’t evict because they’ve been granted squatters rights. You can picket, protest, scream and yell at the top of your lungs. You can try to kick it’s invisible ass and even call the authorities, but it’s still not leaving. The alien may go on vacation ( remission ) at times but it has a nasty horrible habit of getting back in your face with flares and full fledge wars. If it was just as simple as mind over matter, I would happily coexist with my alien. 

So instead, I try to find the humor in all the funny situations my alien companion has landed me. 

     I would like to dedicate this post to the screen writer of Alien, Mr. Dan O’Bannon. He credited his own personal experiences of suffering with Crohn’s disease as the inspiration for that iconic chest-bursting scene. 

Thank you for fighting the good fight sir.

R.I.P.

Dan O’Bannon 

1946 - 2009

IMDB Dan O'Bannon