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.