Don't Worry... Be Happy :)

     Last night a friend and I were talking about one’s dignity after a mutual friend urinated on a public building. He claimed that it was an emergency, but I could not comprehend how an adult could bring himself to urinate on a building instead of waiting to find a restroom. My friend asked whether I would have rather our mutual friend peed his pants than simply go in an alley. I decided that if it came down to it, I guess I would find an alleyway…whether I had to pop a squat or empty a bag. Mutual friend had claimed that emptying my bag would be completely different. I saw the difference, but it was not the difference he pointed out. He believed that urine was very different from feces (and I agree it is), but the main difference I saw was that a young person can generally control their bladder; I cannot control how much output comes from my stoma or when it comes. I attempt to control it with medications, but sometimes I realize that it is completely full and I need a bathroom immediately. I almost feel like it is more acceptable, in an emergency situation, to empty my bag in an alley than to urinate…despite the fact that feces is very different from urine.

     This is all just background, however. My friend said that it would be more dignified to urinate in an alley than pee one’s pants. I agreed. I, however, equated it with defecating oneself. I told him “Try shitting yourself in the middle of an exam and then we can discuss dignity.” (Yes, shitting oneself is something that many Crohn’s patients have to deal with…as well as many others with digestive diseases. People joke about it. Guess what? It’s not funny)

     While having an ileostomy is not necessarily ideal, I do enjoy the fact that I do not have to worry about having a “JC Penney Incident” (so called because a friend once had an accident at a JC Penney’s when she was younger) again…well, unless my bag leaks. But technically, one less thing to worry about.

     I have had some recent worries, however. I was worried about getting pregnant. I told my mom a few days ago, “Good news! I can still get pregnant if I want!” She stared at me blankly, as if it was not that big of a discovery. She wasn’t worried, apparently. “I have pieces of intestine protruding from my stomach. My stomach, which will grow if I get pregnant…. Don’t you see the issue?” …She didn’t. From what I read, pregnancies in women with stomas are normal and usually have no complications. I just may need to change the type of appliances I use and there is a possibility that my stoma could get messed up, but it’s fixable. I’m not saying I want to have babies, but it’s nice to know that I don’t have to worry if I decide I desire a child.

     I was worried about getting a massage: with intestines sticking out, I can’t really lay on my stomach. My amazing grandmother paid for me to get a massage a few days ago, however, and there was nothing to worry about. I simply laid on my back as the massage therapist put her hands underneath me and then I laid on my side. (It was wonderful, by the way)

     I’ve been dealing with some issues at school due to my absence. I have to pay for my apartment, but need to take out another loan to do so (the loan I was getting through the government to pay for my rent was no longer available because I was no longer a registered student). My class schedule is all messed up too. I am working to fix these issues, but they still have me worrying. I was telling my surgeon, who got very angry and told me that if anyone gave me any trouble regarding my health issues to give him their names and he’d take care of it. That man is fantastic…

     There are numerous other worries: what if my bags leak while I’m out in public? What if I don’t have the supplies to fix it? What if I eat something that blocks my intestines? How do I go swimming? What about bikinis? What if more of my intestines become diseased?

     I’ve come to realize that these thoughts aren’t worth mulling over. I have too many other things to do. While I am not attending school currently, I am volunteering at the local middle school tutoring children and spending time with my amazing brother. I am blogging and working on finding summer internships. I have a meeting with attorneys at the Department of Health, who are currently working mainly with LGBT individuals, especially those affected by AIDS. As I am interested in gender law, I am greatly looking forward to this opportunity. I am also very excited to spend the whole summer in Buffalo with my BuffaLove family. 

My family, friends, and I are planning on walking to raise money for Crohn's and Colitis at the Talk Steps Walk (sponsored by the Crohn's and Colitis Foundation of America) in Buffalo on May 21. We walked last year (well, my brother decided to run it instead and had to wait for everyone else to finish) in Rochester and it was fantastic. Not only did we raise a lot of money for research, we had a lot of fun. It was a friendly atmosphere (unlike some of the other runs/walks I have been to to raise money for other things) and there is free entertainment and food after the walk. My sister and I even came up with a slogan and made t-shirts last year. (Sticks and Stones may break your bones, but Crohn's will never stop you) If anyone is interested in donating or walking with us, Click Here :) Let me know if you have any questions.

    Life is full of too much happiness to worry about things that prove to be silly, so Don't Worry...Be Happy. 

Arts and Crafts - Fun + Feces = Stoma Care

     I love arts and crafts. I am an avid scrapbooker and break out my coloring books when I am feeling stressed. I love crafts so much that I was put on scissor probation in pre-school because I cut up my parents’ comforter with my little pair of Fiskars- I just couldn’t help expressing myself artistically.

     One of my favorite surgical residents at the hospital described changing the wafers and bags to my stomas as “arts and crafts time.” As I mentioned, I love arts and crafts. I recall various arts and crafts I have completed throughout my 23 years. Some of these were enjoyable, while others were more frustrating and not fun at all. One thing all of my prior artistic projects had in common: They never involved feces.

     While stoma care does involve cutting wafers and applying glue-like substances to your appliances, so they stick to your stomach and contain your output, it is not fun and, thus, should not be defined as arts and crafts.

     I am forced to change my stoma dressings every three to six days. Usually I just wait until they start leaking to change them. This is how much I dread the process. Typically, stoma appliances hold up pretty well and are even waterproof, so you can shower with them on (provided you use a hair dryer to dry them off afterwards). I have a gaping hole in between my two stomas, however (one of the stomas is temporary and the other is permanent). This hole makes it hard for the appliances to stay on, so mine leak every few days.

Both of my stomas started leaking this morning. Frustrated, I pulled the wafers off my skin. I use adhesive spray to make the wafers stick longer, but that makes it hard to get them off when I don’t need them on anymore. It basically hurts like a bitch. Sometimes I even cry as I pull them off. Once the wafers are off, there is usually a sticky residue on my skin where they were. Usually I use a wet washcloth to get as much off as possible. Today I got in the shower and just showered without any appliances on my skin. I won’t lie, it felt pretty nice even though feces was being emitted from my left stoma the whole time.

     I then carried all my supplies into my bedroom and laid down on my floor to start dressing my stomas and my incisions. It usually takes me a long time to do this mainly because I shower and change my dressings after I eat breakfast. In the future I will probably change this habit. With feces pouring out of my stomach, I quickly measured the stoma and used my stencil to cut the wafer to the correct size. (See, this does sound a little like craft time) I sprayed my wafer with adhesive spray and then prepped my skin with a powder to help with irritation and wipe to create a barrier between the skin and the adhesives. As usual, I went to affix the wafer to my skin and feces shot out of my stoma. I had to clean the area and try again. I finally got the wafer on… and realized I put the wrong wafer on the stoma (my stomas are unique and each gets its own type of wafer). *sigh* I pulled off the wafer and started the whole process over again.

     Once that was done, I dressed my other stoma. Then comes the waiting period. I have been told that if I lay flat for at least twenty minutes, my stoma appliances are more likely to stick to the skin for longer. I usually find ways to occupy myself. I have mastered putting dressings on my incisions—so I did that quickly and called it a morning. (By then of course it was past lunch time, so I got food and hooked myself up to my IV pole to receive a liter of saline fluids). Medical time for the day completed!

     Stomas aren’t super pretty. They really look like giant sores protruding from my stomach. Giant sores that emit poop. Everyone else emits poop from their anus…and that’s not super pretty in my opinion either. I usually like to simply put my appliances on and hide my stomas and bags. It’s not like I am in denial…I know they’re there and I accept them, but I don’t like to stare at them either. I often wear leggings and longer shirts/short dresses (I am so lucky these are in fashion now) to hide my bags without squishing them. I have yet to master jeans, but I am sure I will.

     My favorite stoma story thus far involves looking at my stomas. I was discussing my stomach with a male friend. Horny, as usual, he made a suggestive comment. I informed him he wouldn’t want to act on his suggestion due to the intestines sticking out of my stomach that emit feces. He was somewhat speechless, so I explained that I had a wrap that I could wear to hide my stomas and bags. (www.ostomysecrets.com –such a great idea and site). “Good,” he replied. “As long as I don’t have to see them, I can deal with it.” I decided right then that if I was to ever be intimate with or date a guy, he would have to do more than deal with it… like me, he would have to accept it. He would have to embrace it. I would not expect him to stare at them, but he sure as hell better not be grossed out by them. Yes, they do produce feces…but so does your asshole.

     Later, I discussed this with a close girlfriend. Her response was memorable and made me smile. It was horribly gross, but it made me smile. “Deal with it?! Jeez. It’s not like you asked him to blow your stoma!” No, I did not. It grosses me out to think about that. Who would think about that? Who would do that? …Then again, there are people who are into anal play…

     That’s not my sort of thing. I prefer arts and crafts… 

   The canvas for my arts and crafts. Luckily, things are starting to heal up. :)

"When Was Your Last Bowel Movement?" ... "Um. Right Now?"

     I have the utmost respect for the nursing profession. Nurses are often more knowledgeable than physicians, have to interact with patients a lot more, and rarely get the respect and recognition they deserve. The majority of the nurses on the 1400 Unit at Strong are fantastic and I was incredibly lucky to have been under their care during both of my recent stays at the hospital.

     Jon was hot…hot and about my age. He was also extremely nice and suffers from Crohn’s disease himself. This made things easy because he understood what I was going through. It made it awkward because he was hot… “Jon, There is stuff [and by stuff, I mean urine and ostomy output ((poop))] in the bathroom [for you to measure and dispose of].” How unsexy can you get, really?... “Jon, I need someone to get me gauze so I can change the dressing on this incision…” You want to see the incision…OK. As I pull down my panties to show you, you can see my vagina as well. Not very sexy either.

     Jon and I bonded over our commonalities however. Dy and I had a common bond too: We both love Grey’s Anatomy. (My sister, mother, and I watched all 7 seasons while I was in the hospital, compliments of Ms. Kristin) Dy would come in to check on me (the nurses often worried about me because I never bothered them and was pretty quiet) and spend time in my room just to watch some Grey’s with us.

     Then there was Pat. Pat was a spitfire. You could tell when Pat was working…you heard her anywhere on the ward. The first night I met Pat, she came in my room as I was about to go to bed. She checked me over and then told me I needed to walk. My ankles and feet were swollen from all the fluids I was receiving. Pat informed me that I was a “young healthy girl” and that I should be up and about. She told me she expected to see me around the unit. I got up for Pat and walked the halls at 10 pm as I listened to Eminem on my Ipod. Needless to say, I was a little sore the next day. Pat was inspiring…even though she had a way of coming in and talking to you forever when you just wanted to sleep.  

     I got excited to learn which nurse was assigned to me. I was usually cool with whoever I got because they didn’t need to do too much for me. I changed my own dressings and had my sister and mom around during the day to help me with anything I needed. Sometimes I also got nervous to learn who I was assigned to. While I loved the majority of nurses on my unit, there were a few that I deemed incompetent and dreaded having.

     For example, there was Suzette. I first met Suzy-an extremely short, plump, balding lady- when I had to be taken down for a CT scan during my initial stay in the hospital. She decided to accompany me and my transport person down to radiation. She had a difficult time moving the stretcher I was sitting on and continually received dirty looks from the transport person, as well as my overprotective mother and sister (who became my personal nurse while in the hospital to make sure no one killed me). After my CT scan, someone decided that Suzy could take me back up to my room without a transport professional. Bad call. She started moving me as the radiation dude yelled, “You need to put the railing up.” She paused and simply stared at him. He said again…twice, in fact… “You need to put the railing up.” Confused, she finally realized that she had failed to put up the side railing on my stretcher. “Oh, I was just about to do that.” Yes, Suzy, I am sure you were just about to do that. I am glad you did because with your driving, I would have fallen out and injured myself. Even with the railing up, I almost died. Before we really got going, she discovered that we didn’t have my chart. She attempted to go into the CT room, leaving me in the middle of the hallway. My sister had to move my stretcher so I wasn’t blocking the pathway. Then Suzy could not access the CT room and had to knock on the door to get someone to let her in. Once we finally got moving, we almost hit another stretcher and then were almost taken out by a garbage bin. I survived, however.

     The next time I was assigned Suzette, I asked the nursing supervisor to reassign me. The supervisor obliged. I was assigned Suzy a few more times during my stay and usually just put up with it because I did not want to cause trouble. Mom and Katie were usually there to protect me anyways. I also found little ways to mess with her and entertain myself. I liked to have my sister help me raise my IV pole, so when Suzette came to change my medications or fluids, she couldn’t reach them. The one day when she came to make my bed while I was showering, my sister informed her that I liked the blue pads on my bed. Staring up at the blue pads on top of my very tall cupboard, my sister softly chuckled to herself as she offered to get them for Suzette.

     Suzette also liked to praise me for doing things by myself. Perhaps she was used to more elderly patients who were unable to be self-sufficient, but I found the accolades highly annoying. As I would get out of bed by myself or change my dressings myself (usually because I did not want her touching me), I would hear a “Oh, Great Job Amanda!” …Really.

     Because Strong is a teaching hospital, I also had to deal with student nurses. One memorable nurse was Ukrainian. I cannot remember how to pronounce or spell her name. I do remember that she introduced herself and, after asking a few preliminary questions, asked “When was your last bowel movement?” “Um… Right now…” She stared at me for a minute as I explained that I have ostomies. She then asked where I would like my shot of Heparin. “In your stomach?” …No my dear student nurse. I do not want a needle shoved into my stomach. Where do you plan on finding enough skin to shove the needle into? I have two ostomies and a large T-shaped hole in my stomach. The only area left on my torso is near my lungs. Please shove the needle into my arm instead. She then lectured me about wearing leg compression things to prevent blood clots (I walk, thank you.) and using my breathing machine (I haven’t used it because I spent my first night in the hospital in the ER and yesterday I was in an ungodly amount of pain. My last thought was: Oh, I should really be practicing my breathing so my lungs don’t fill with fluid). *shakes head*  

     Then of course, there are your home health care nurses. It is extremely convenient to have a nurse come to your home to get bloodwork done and have the necessary dressings changed (I can’t change my own IV site dressing because it is a sterile procedure). The county doesn’t always hire the best nurses, however. The nurse who came the other day forgot to take her shoes off. After tracking mud through the whole living room, she apologized profusely. I told her it was fine. It really wasn’t. After I explained all my stomas and incisions (they send a new nurse each time and I have to explain this once a week) and she did her thing, she left. Then I got down and scrubbed the floor for a while. (I later had to scrub the floor again because the Freschetta pizza I ate for lunch did not agree with me and I vomited everywhere. I am sure Freschetta didn’t mean it, but I hold a grudge against the company. I can eat other brands of pizza without staining the carpet with partially digested sauce…).

  

     I would like to reiterate that I have the utmost respect for nurses and the hard work that they do. I could never be a nurse…I would kill someone first and it probably wouldn’t be a complete accident. I just don’t have the patience to deal with patients. Until nurses stop asking me when my last bowel movement was however, I cannot stop telling the ridiculous collection of stories I have about them.

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...