Did You Call to Reschedule your Colonoscopy? … Um. I don’t have a colon anymore.

Doctors make mistakes all the time. Some are more forgivable than others. You rarely forget them, however. You learn from these mistakes. You learn that in the medical world, you need to take care of yourself. You can’t expect your doctors to be perfect.   

Around the age of ten, I began losing weight, experiencing exhaustion, and having blood in my stool. My pediatrician was convinced that I was simply suffering from anemia. After taking iron pills for a period of time with no improvement, my parents took me to an oncologist due to a family history of leukemia. While I do not remember the specifics of how I came to be diagnosed, I can be certain that doctors made  some mistakes in diagnosis along the way. Eventually, I was diagnosed with Crohn’s Disease and treated accordingly.

One of the treatments that seemed to work was Remicade infusions. This medication, like many others used to treat Crohn’s, was originally meant to treat Rheumatoid Arthritis. (This makes sense, since both conditions involve inflammation in the body). I went in for infusions every few weeks between the ages of about thirteen until sixteen or so. Then the Remicade stopped working and I started getting very sick.

Enter Dr. Rabih Salloum, a man I have adored since the first time I watched him yell at my pediatric gastroenterologist. I was admitted to the hospital immediately after performing as the lead in my high school drama production (I refused to be admitted prior to our final performance). The medication that had been working so well had also caused strictures in my rectum. My gastroenterologist failed to check for this as I was receiving treatments. Dr. Salloum fixed me up during my ten-day hospital stay and has been fixing me up since then. I switched doctors to an adult gastroenterologist soon after that.

The most recent errors of my medical team earned me forty-six days in the hospital… and then an additional four days after being home for a week and a half. I came to a point in my life when I was counting down the days until surgery…that is how sick I was. I couldn’t live life anymore. I went in for an ileostomy in December. During the routine surgery, my adored surgeon accidently nicked my small intestine. We all realized this about ten days later when I started vomiting and feeling like complete shit. A few tests confirmed the error and my surgical team cut me open further to stitch up their mistake. Unfortunately, my remaining intestines were paper-thin due to years of steroids and trauma from my disease. Their stitches didn’t hold and I got sick again. We decided to cut me open even further and then pull out the ripped part of my intestine, forming a second stoma. The incisions were so deep that they used foam and a vacuum system to keep me closed up for a few days. I had about 3 more surgeries spread out the next few days to clean out my insides and finally suture my tummy together. The sutures didn’t hold and we ended up cutting them out. My stomach is currently home to two stomas and a large whole that is getting smaller daily as it heals from the inside out. 

Many mistakes were made and my surgeon was open about them. He has informed me that, “At this point, everything is my fault.” It isn’t all his fault… and it’s hard to blame him for the parts that are because he is pretty good at what he does. He loves me and everyone makes mistakes.

He made another recently by telling me I could eat anything I wanted. (See Beans, Beans…). Partially my fault? Yes, but I can still blame him a bit.

Of course he couldn’t forget that I no longer had a colon. He took it out. The staff at my gastroenterologist’s office did, however. I called to make an appointment the other day (I don’t want to, but I have to. He isn’t a very good doctor, but he’s cutting edge in research). His horrible secretary answered and asked if I wanted to reschedule a colonoscopy.

No, you dumb girl. We discussed this a month ago, actually. You called me to tell me my doctor had to schedule my colonoscopy for a different day (probably because you screwed up the schedule)…a day after my ileostomy surgery. Remember that? We decided it wouldn’t make sense to do it after surgery because there would be nothing to scope. Yes, we had this conversation. I yelled at you. You forgot though.  

“Um. I don’t have a colon.” She paused for a while and then proceeded to ask what I needed to see the doctor for. Seriously.

WARNING: Pictures of my tummy follow. Probably not for the easily grossed out. :)

 After the surgeons went in and stitched the intestine. The cut down the middle is where they went in. The plastic pieces on the sides are tension sutures. The gaping gross hole at the bottom is where they removed my organs initially. Finally the red dot is my stoma. (and some laproscopic scars).

 A bit better--Stomy and Junior. (Yes, I named my stomas and call them by name when they are acting up as I change their dressings). Everything is sutured up, but they didn't last long. I look like this now sans the sutures and with a hole in between my stomas...

Beans, Beans...Magical? Sure.

Here I sit in my horribly uncomfortable hospital bed with an unintentionally rude neighbor on the other side of a floral-print curtain. I hear her television perfectly. All she watches is Fox News. I feel much more educated about current events, but she never turns the television off. Ever. She also snores. Sharing a hospital room does have its perks. It gives me stories to share with people. I love telling stories and like to think that I am pretty good at it. 

For example, upon my arrival to my room early Thursday morning after spending all night in the emergency room, I got to experience my roommate trying to order food and watch television. First, she tried using the remote to call hospital room service. Her family also helped her. They could not figure out why it wasn't ringing through. I wanted so badly to yell through the ugly curtain that the phone is located in a bin on the wall behind her bed, but I couldn't stop chuckling to myself. Karma is a bitch, however...laughing makes everything hurt. Once the nurse came in and explained the difference between the remote and the telephone, my neighbor decided that she wanted to watch television. They turned it on and the screen explaining how to set up television service appeared. My neighbor and her grandson did not wait long enough to get the directions in English and only saw the Spanish instructions. Complaining that they did not speak Spanish, they started flipping through channels only seeing static. Her grandson suggested that they would have to get her a new television because hers was clearly broken. Again, I wanted to say something, but didn't. The nurse finally came in and explained that the hospital charges to watch television and you have to activate the service. We have been watching Fox News ever since then. 

Don't get me wrong, my neighbor is a sweet lady, but you need some source of entertainment when you're sitting in a hospital bed for days on end. She is sweet, but annoyed me quite a bit last night. I know she didn't mean to, but she created quite a hassle for me when I woke up having to pee urgently. I rolled out of bed, unplugged my IV pole that probably weights more than I do, and made my way to our bathroom. My pee hat (don't ask me why they call it that) was in the toilet, but was empty. I knew she had used it on accident, even though they are labeled clearly. I know she used it because there was feces on it. Who doesn't poop? I don't. Well, I haven't normally since I had an ileostomy in December. Crossing my legs, I got back to bed to ring my nurse. Luckily, she came quickly and got me a new hat which she labeled with my name in about six different spots. It didn't work, however. Later in the morning I heard my neighbor's nurse tell her to wait because, "That wasn't her hat." My neighbor is going home this afternoon and I wish her the best. :) 

Why am I in the hospital anyways? I will explain the whole ordeal in much more depth in a later post. In a nutshell, I have Crohn's Disease. I was diagnosed when I was ten and was doing pretty well until the past few years. Medications stopped working and my only real choice to living a happy life was surgery. I went into the hospital immediately after my 1L first semester final exams and had an ileostomy. Basically, the surgeon (who has followed me since I was about sixteen and loves me dearly) removed my colon. He also removed my gallbladder because I had gallstones and my appendix because it is attached to the colon. Because the colon is gone, I cannot have bowel movements like a normal person, so a part of my small intestine was pulled out of my body to create a stoma on my stomach. This one-inch, circular piece of intestine is where I excrete waste from, into a bag. It sounds gross, but it really isn't. Promise. Everyone poops. I just do it differently now. I ended up spending 46 days in the hospital due to complications. (Again, more on this later). I finally went home after spending my birthday, Christmas, and New Years in the hospital. 

A week later I went in for my post-op appointment. My surgeon told me I could really eat anything I wanted. I was under the impression that I needed to avoid foods high in fiber because they are difficult to digest. I went with what he said, however, and had bean soup for dinner Tuesday night. Wednesday I didn't feel well, but everyone had a stomach flu, so I shrugged it off. I started vomiting and having horrible cramps. My mom was convinced it was just the flu. Finally, Wednesday night we called the colorectal surgeon on call and ended up in the ER. I had blocked my intestines with bean soup. The pain was my intestines trying to work the food through my system. I was given lots of pain killers and anti-nausea medications. Thursday evening I passed the blockage. I know this because I watched about a cup of whole beans emerge from my stoma. Yes, it was sort of gross. It was also fascinating and relieving. 

I am doing alright currently and have plans on being released tomorrow. My surgeon made me promise not to eat bean soup again. Beans may be magical. Magically painful for those without the ability to digest them...