This video gives a brief history of my life with Crohns disease and is part of my application of a Crohn's Scholarship! It's been a rough couple of years, but I've also learned a lot...
So getting a port, was not as easy as I had anticipated. In fact it was not a pleasant experience at all. I really wasn't nervous about it at all until they told me that they sedate you less for the port, then they do for a colonoscopy...this was not the kind of news I was looking for. So the nurse explained what a port was and showed us a little book explaining it in very simple terms.
Basically a port is a type of central catheter, or catheter leading to your big veins near your heart. There are two parts to the port; there is the actual port which is the size of three or so pennies stacked on top of each other. In the middle of a port is silicone type material, which allows you to access the port. Connected to the port is a small tube that fed into one of your central veins towards your heart.
When a port is not accessed you simply have a bump underneath your skin, but to access the port, you have to stick a needle into the cushy middle and leave the needle there until it is un-acessed.
I definitely did not realize that I was going to have two scars from the procedure. One two inch scar and one one inch scar, I guess I didn't think this through as much as I should have. So when they told me I wasn't going to be completely put under I started to freak out. Back in the operation room, I told the nurse that I would like to be as sedated as possible, and she told me she would do her best. Well towards the end of the procedure I started to freak out. I started crying and just freaking out, and I really have no idea why. They couldn't give me anymore sedation, because I had asked them to give me as much as possible, so instead they had to order some adivan up from the pharmacy, which took forever. Once I got the medicine, I started to calm down and they finished. I really didn't feel anything during the procedure, nor did it hurt, so at least that wasn't too traumatic.
Bottom line is that I may have over done it on the medication, because for the rest of the day I couldn't stand up for long periods of time without feeling like I was going to pass out and I felt super nauseous. I also pretty much slept the rest of the day and night after getting home, so maybe I shouldn't have asked for so much medicine...oh well.
They told me before the procedure that I was going to be sore afterwards. I am not sore. I am in pain. Yesterday I was in serious pain, but today it has gotten slightly better. They say the pain may be amplified because I am so thin and there isn't anything there to cushion the port, but whatever the reason, it hurts. I am hoping that it continues to heal quickly and stops hurting before I go back to school, but who knows.
I am glad that I have the port and think it will end up being a good thing, but right now I am not so sure about it. I don't have full range of motion in my arm because of the pain and when I open my mouth, yawn, sneeze, or pretty much move at all the incision hurts, so I am just hoping and praying it stops hurting soon, so I can return to pretending to be normal in my not so normal life.
Everybody has a story. Everybody's story is unique and full of scars. Many people pretend their scars aren't there, but for me my scars and my disease have made who I am today, and I wouldn't trade that for anything. I used to be embarrassed by my disease and my scars. I used to want to hide what was really going on in my life, but the truth is, my scars have made me strong.
Because I have been Ill so often, I know that I can overcome anything in my life. Nothing is ever going to hold me back from my dreams.
I have 8 scars on my abdomen ranging from 1 inch to 4 inches. These scars were acquired in a 4 years period and over 4 different surgeries. These surgeries were scary and extremely difficult but I've learned that these situations are what you make of them. Here are the top things I've learned from going through surgery that have made me a better person, and will hopefully give you a new perspective on things:
Wether or not your scars are physical or emotional, everyone has scars. Everyone's scars are different. Some are healed and some are still tender to the touch, but they are all scars. We are told to hide our scars and that they make us unattractive or disfigured, but I view scars as badge of courage and strength. They tell a story of what you've overcome, so share your story with those around you and be proud of your scars. Because to me, my scars help tell the story of my not so normal life.
Quick rehash of my previous post: went to Mayo, found out I needed surgery, and met with the surgeon. The surgeon set a time for us to meet with the WOCN clinic, which stands for Wound, Ostomy Incontinence Nurse. Yes, after all this time I still had to look up what WOCN stood for, quite frankly I only knew what the O stood for in WOCN.
We arrive at the WOCN clinic thinking that an ostomy is "no big deal" and that lots of people my age have them. Well that's WRONG! The more the nurse talked the more horrified I became. When she told me that even though I wouldn't be passing stool I might still pass blood and mucus, I mentally lost it. I kept an engaging look on my face and inwardly freaked out. WHAT IN THE WORLD WAS GOING TO HAPPEN TO MY BODY! After the appointment my parents and I went downstairs to have blood drawn and we just lost it. We got the giggles and could not stop laughing. People probably though we were crazy, but it was how we coped, we just kept laughing and laughing about everything we had just been told.
Surgery was scheduled for December, and I returned to school. We upped my steroids, switched back to Humira, and I did supplemental nutrition during the day in order to try to build my body up before surgery.
Surgery at Mayo was really no big deal. I have a brief mental image of laying on the operating table waiting to be put under and thinking, "I wonder if the surgeon is going to think my tan lines are weird." I know, that's sorta pathetic, but I was already drugged-up at this point. Three days after surgery I was out of the hospital, but that very night I was in terrible pain and started throwing up. Out of the two complications with an Ostomy, I had developed one of the complications my first night out of the hospital: an obstruction.
Thankfully it cleared itself up by morning, but I still had to see the doctor and get hydration later that day. We set off for home on Saturday and on Monday I developed the second complication with an ostomy: dehydration.
It was the day before Christmas and I couldn't walk without my heart rate spiking, my feet cramping and starting to pass out, so off to the hospital we went. I was having so much output from my ostomy, that we tried a variety of drugs to slow it down. We tried: immodium, lomotil, codeine, hyrdocodone, and the final try, tincture of opium. Despite all these medicines, I continued to have 4-6 Liters of output daily and was going to the hospital for fluids many many times a week. Although I was back at school, I was only sort of living. I was going to the hospital 3x's a week, had zero energy and everything I ate passed right through me. I went to class, went to the hospital, tried to eat and slept. I thought my life was crazy then, but I had no idea what was going to happen next, in my not so normal life.
I've got 8 scars and am missing two feet of intestines and my life isn't normal, but whose life is normal? I want to use my experiences to help you, even if it means sharing embarrassing experiences. I am also looking to break the stigmas associated with IBD in order to make living with IBD just a little bit easier. Hope you enjoy!
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