Adventures in colorectal surgery II

So I had my ileostomy surgery back in February 2006 and it really did dramatically change my quality of life. And after a couple of months I became somewhat accustomed to life with a stoma. One night sometime in May as I was getting ready for bed I noticed a wet spot on the front of my pants and I'm trying to figure out where in the world it came from I moved my hand across my wafer and came back with blood and watery mucus. Well needless to say this freaked me out quite a bit. I examined my wafer only to discover that it had turned to mush in one part where it covered my midline incision. Now had it been a lot of blood I certainly would have gone to the ER but considering the amount of blood and the fact that I had an appointment with my surgeon within 2 days of this discovery I figured I would be ok. I did change my wafer the next morning to get a look at what was going on, a hole had opened up in my midline scar about the size of a pencil eraser, I could not see how far down it went and it continuously oozed blood and a watery substance. To be on the safe side I did email my surgeon and talk to a nurse. He said I would be ok until I saw him.

Now between this visit and my very 1st visit with Dr Remzi I had seen him at least a dozen times, and had been admitted to the hospital about 2 weeks before this for a partial obstruction. So Dr Remzi and I had gotten to know each other pretty well and I had discovered that not only is he kind and compassionate, he has an excellent sense of humor. As I'm sitting in that little examination room waiting to see him, I'm wondering if he will remember about my little hole problem and what exactly (if anything) we're going to do about it. I tried to sit calmly and read my book but no matter how much you love your doctor, when you don't know whats going to happen when he walks into the room, its pretty unsettling. Dr Remzi burst into the room with a nurse and a Fellow trailing (a Fellow is a doctor who has finished his residency and is doing a Fellowship for a particular specialty). Before I even had time to say "hello" Dr Remzi said "UP! Up onto the table." Well, I think to myself, I guess he remembered about my little hole. So now I'm laying on the table looking up at him and Dr Koh (the Fellow) and smile sheepishly. Dr Remzi grabs the giant light over the table points it at my belly, turns it on and says "Hello there sweetheart, ok I want to take a look at this thing." I obediently move aside the clothing that obstructed his view of the hole. The nurse is on the other side of the table and puts a glove on Dr Remzi's hand, just like you see it done on TV and she hands him a q-tip looking thing (not the foot-long one). So he starts probing around in the hole and I can't feel it because if you don't know this, scars don't have nerve endings. I'm just laying there trying to relax when Dr Remzi says "Give me the hook." My eyes get big. "HOOK???" I say as the nurse turns around to grab an instrument. "Hook??" I repeat as the nurse passes him a tool that looks remarkably like what dental hygienists use to scrape plaque off of teeth. "Yes." Dr Remzi replies "I'm going to hang you from the ceiling with it!" Now, of course I know he's joking but I emit an audible gasp or ACK of some kind. Dr Koh says "He's just kidding". This makes me laugh, "Yes, I know, Dr Remzi is a very funny guy."
Things are beginning to get uncomfortable for me at this point though because I've figured out that Dr Remzi is working on a suture because I feel this tugging in my gut. I can tell the suture is still attached to something and he's trying to pull it loose. I make the mistake of looking down and I see that this hook is a good 1/4 inch inside me and the tugging is increasing. "ACK!" I repeat one of my favorite phrases. Dr Remzi glances at my face "Don't look!" he commands me. So now I've got nothing to do but stare at his face and grasp the side of the table, try not to move or whimper.
Its fascinating for me to see Dr Remzi's 'surgery face' because every time I've seen him up until now its either just chatting in an office visit or him checking on me in the hospital or I'm unconscious. We usually just talk and laugh but now as he's doing what he does best he emits almost palpable waves of power and concentration. But alas, the tugging at my belly is really getting to me and I cannot contain my grunts of pain. Dr Remzi says "Ok, I'm going to stop, I can't get it to come out and I don't want to hurt you. If this gets worse we'll treat it more aggressively." He put the hook down, took of his gloves and the nurse swabbed the wound. After I got cleaned up I sat in a chair and our office visit continued like normal! This was certainly the craziest visit I had in the colorectal department though

I don't want my life to be defined by poop

I realize that sounds a bit ridiculous but I feel like its something that I have continuously decide every day. Some days I don't care, I feel fine and nothing about the ileostomy or fistula is bugging me and I feel fairly normal. Other days..... Well, other days output hurts my stoma or the fistula is really active and making me miserable or I just look down at my ileostomy and hate it. And its hurtful when I tell people I may have to have a permanent ilestomy and they act like its no big deal. After all they had a friend or cousin who has one and he's doing just great. Sure, he's relatively healthy and adjusting but what has he gone through to get to where he's at?

I'm talking amputation here. No, I'm not losing my arm or leg but I am losing my rectum and its going to change my life forever. Its going to change what I see when I look in the mirror, the clothes I wear, the way that I do things. Please don't minimize my pain by acting like its not life-altering.

People tell me its not going to change who I am. I think that's misleading. Your experiences always change you. For better or for worse you are altered by what you go through. Its not the ileostomy itself that changes who I am but the things I went through before I got it, the surgery, hospital stay and recovery afterwards, the learning to live with it, the people I've met along the way.....

My life is going to change forever, the real question is how? Am I going to let the fact that I poop different from everyone else define me? I don't want it to. I want my experience to help me be more sensitive to the sufferings of others. I want to be able to help other young people and families facing life-altering surgery because I've gone through it. I hope that I can stand out from other patients to my doctors and nurses because I have hope and a will to survive it and not be bitter despite whats happened to me at my age.

Please pray for me. Pray that God will help me to accept the path that He has for me, that I will rely on Him for the strength I need to endure what I have to endure. Its a long hard road of recovery ahead of me both physically, emotionally and spiritually, and I don't want my life to be defined by poop.

Adventures in colorectal surgery I

Some of you have been interested in my stories of time spent in the colorectal wing of the Cleveland Clinic so I've decided to chronicle them a bit. I know it doesn't sound like something that could be amusing but thankfully, I found myself laughing a lot more than worrying and that's a good thing.
I'll start at the beginning.

So my first visit to the Cleveland Clinic was pretty intimidating. Mind you, I hadn't been to see a colorectal surgeon since I was 13 years old and my memories are not fond ones as I'm sure you can imagine. And even just thinking about it colorectal is just one of those words that makes you clench your buttocks together almost involuntarily which is pretty much how I sat all that day.

After nervously waiting in the waiting area about 20 minutes my name was called. It was one of those moments you dread. You're sitting there minding your own business casually looking at all the other poor patients and wondering whats wrong with them then you hear your name. Like having your name announced over the loud speaker at school to go to the Principal's office, and everyone looks up at you as you gather your stuff and walk out of the waiting room.

The examination room is small and the exam table is in the center of the room, not off to the side like in other doctors offices. There are huge lights over the exam table, the kind you see in operating rooms and dentist offices, and the table has pedals so it can be adjusted. There is a counter along one wall with small electrical devices and large metal probes, latex gloves and surgical masks and a jar full of Q-tips that are a foot long. [I actually snagged one at my list visit !] There is flexible sigmoidescope machine with a computer on a rolling cart at the end. Its very similar to the device used for colonoscopies except its meant to be used only in the rectum and j-pouch and they normally do not use sedation as the procedure is very short. So there I sat all alone in the room waiting for the doctor in my gown and socks just staring at this machine. Its got a fiber optic cable with a light and camera at the end and a knob and handle at the other. And all along the length are tic marks with numbers, 10, 20, 30 cm. I got up to get a closer look. There is a hose running along from the sink into the machine and as I'm looking at it I see the words "air" and "water" along the handle and there is a VCR below the machine. So not only are they going to stick a camera up your rear, they're going to fill you full of air and water and tape it!!

I think terrified is the word that best describes my frame of mind as my surgeon came in and introduced himself. My first view of Dr Feza Remzi is intimidating. He is average in height and build but has a fairly strong Eastern European accent (he is from Turkey). He shook my hand and there is something very familiar about it because surgeon's hands are very soft but strong and they will never squeeze your fingers. It doesn't take me long though to realize he is kind and concerned. We discussed my history and my present problems which brought me to the Cleveland Clinic. He asked me "are you suffering?" I didn't even know how to respond. Suffering? No, I don't think so, people in Africa suffer. People with chronic pain suffer. I'm not suffering.... then he said "I think you are suffering." At that he told he would like to do an exam under anesthesia to access the fistula and j-pouch. When we got done discussing the logistics of the outpatient exam he asked if he could "take a look." I think I turned white as a sheet mumbled "ok" and slowly got up and moved towards the exam table, the nurse in the room stood up to help me on to the table. Dr Remzi looked into my eyes and said "NO. No, it's ok. I will look during the exam. We don't need to do this now."

See what I mean about compassion? He saw that I was terrified and instead of ignoring my feelings or telling me to suck it up he just stopped, even though it might have been inconvenient for him, he cared more about my feelings than his time. I got dressed and left, and I've never been scared to visit Dr Remzi or the colorectal department again, and believe it or not I even look forward to seeing him!

More to come!

I've got intestinal disease, accept it.

I'm tired of being treated like I could be healthy if I really wanted to.
Why is it that if you've got heart problems or liver problems or cancer people will accept the fact that you're sick and need a doctor but if you've got bowel disease (crohns or colitis) then you just aren't eating right.

I'm not saying that we don't eat a ton of crap we probably shouldn't here in the U.S. but if I get another leaflet or copy of Jordan Rubin's "Makers Diet" or Kevin Trudeau's "Natural Cures" I'm gonna scream. Please. No more mega supplements, powders, pills, grasses, smoothies or meditation exercises. No all-organic, raw foods only, liquids only, gallbladder cleansings, colon cleansings (I haven't got one!), think positive, pray and above all DON'T LOSE HOPE.

I had a lady tell me a couple of weeks ago "surgery and drugs are not the answer, God gave us intestines for a reason." I wonder, would she have said that to me if I had colon cancer? What if I needed a kidney transplant? Bad heart valve?
These people are talking like disease and bad health are unnatural. Since when?? Cause I see a lot of disease in the Bible and I'm pretty sure they ate all organic food, didn't wear sunscreen, got plenty of exercise and drank a lot of water without fluoride.

Have faith, pray, don't lose hope.
Don't you think I pray? Don't you think I've spent hours on my knees day after day after day, month after month? The truth of the matter is that God does not do a lot of healing these days. Notice I didn't say He can't (that would be a lack of faith) I'm saying He won't. I'm not being cynical, I'm being realistic. I've had more surgery and spent more time in the hospital in my 28 years than most of you will in your entire life. You can't tell me that's not God's plan for me.

I went to the best hospital in the country, had the best colorectal surgeon in the world look at me, I've tried all the medical therapy and was finally told there is nothing more that can be done. I've even tried chiropractors, special supplements and natural remedies. I've had hundreds of people praying for me, I had pastors gather around my hospital bed an lay hands on me but God has not healed me. I have a hole in my intestine, now I'm trying to accept the fact that I've got to lose my j-pouch and my rectum so I can live a semi-normal life. One of the hardest decisions I ever made means I will never go to the bathroom like a human being again and I get treated like I gave up.

I have a disease. It will not in all likelihood kill me, but there is no cure. Its not easy to accept but I'm trying. Why can't anyone else accept it?

Happy Birthday Willy

February 10, 2007 is Wee Willy my stoma's1st birthday, or (if you prefer) the anniversary of his creation.
Its been a rough year and I can't say that I'm thrilled he is still here. When I first got him I assumed I'd have him 3-4 months tops. But, he has relieved me of my much of my suffering from the fistula and I will be the first to admit I have had a very easy time with this loop ileostomy.

So shouts out to Dr Remzi for giving me such a good stoma, and happy birthday Willy. :)