"So Called Problems"

Take all of your so called problems.

Better put them in quotations.

     While I am not a huge fan of his work, John Mayer has it correct this time. I have always said that everything is relative: pain, problems, happiness, values. Each person has his or her own outlook on life that shapes their views and experiences. Someone will always have bigger problems than you, and your problems will always seem much more important than other people's, it's how life works. The best we can do as human beings is to remember to look at everything through various perspectives and realize that everyone doesn't stand in the same position we do: Go on, step in someone else's shoes.  

    I have been wanting to write a blog about understanding the problems we face and being thankful for the blessings bestowed upon us, but haven't quite had the time or the material. I think I may be ready now. 


     It started a few weeks ago when I started spending more time with one of my beloved L5s. Tina had signed on to work as a research assistant with the same professor I am working for. Within the first few days of working together, Tina and I organized a work date to eat homemade spaghetti and watch a current documentary on the Attica Uprising. We spent time catching up on our own lives as well. Tina asked how I was feeling and if I was getting more sleep than before surgery. It took me a while to figure out what she could possibly be talking about. Then I remembered that prior to surgery in December, I was up every hour using the bathroom and when I was in bed, I was curled up praying that the cramps would subside just for a bit, so I could get a little bit of sleep. It seems like forever ago. I smiled at Tina and told her that sleeping was so much better, even if it was occasionally hard to fall asleep when my boyfriend was over because he snores. 


    My sleep problems were huge at the time. I felt awful and all I wanted to do was sleep, but I couldn't. It's only six months out, and I can barely remember it being a problem. It just goes to show that not only are problems relative based on the person, but based on the time. If I was still having sleep problems, however, I bet they'd be at the top of my list of grievances. 


    I also had the amazing opportunity to celebrate Tina's birthday with a lunch at Olive Garden, where I was the "token white girl." Growing up in Wyoming County, where there are more cows than people and the population is probably 98 percent white, middle class, heterosexual, English-speaking individuals, Tina's birthday lunch was eye opening. I have been exposed to a lot of different people through traveling abroad to Poland during my sophomore year of college and through just being in the collegiate atmosphere, but not this much. Tina herself is Taiwanese and spent part of her life living in Colombia (and Brazil, if I am not mistaken). She speaks English, Spanish, Portuguese, and probably another language. I love listening to her talk on the phone with her friends, two of which she brought with her. While their names and countries of origin escape me (and I feel like a horrible friend for this), they were both in the states learning English (and could speak really well) and knew various other languages. Our friend Leigh was present as well. While Leigh grew up in South Carolina, she spent time living in South Africa and also knows how to speak Spanish fluently. I told everyone I was at lunch with that I felt so sheltered and uncultured because I had only been out of the country once and knew only a bit of French (even after studying it for 9 years). Tina told me, "Girl, you're so young. You have so much time to travel and learn languages." It's true. Being uncultured and sheltered isn't a problem. Having friends who are cultured and worldly are a blessing however, and have encouraged me to change my "token white girl" status. Watch out world, here I come ((after law school, of course.)) 


     The real reason that I waited to write this blog was because I want to keep the blog based on my life with Crohn's, so I decided to wait until I was in the hospital again-- don't worry, this time it was planned. I went into the hospital on Tuesday July 12 for "closure of enterocutaneous fistula with small bowel, resection, and anastomosis." In plain English, I had one of my stomas sewn up and put back inside my abdominal cavity. Surgery went well and I was only in the hospital a few days. While my mom couldn't be there everyday all day, and my sister wasn't there at all (she's still in Kentucky doing research), my amazing boyfriend was there a lot (even agreeing to snuggle with me all night in my awful hospital bed one night). I was released Friday afternoon and my mom drove me right back to Buffalo. 

Chilling in the Hospital with Fritz (compliments of the boyfriend) enjoying Orange Ice

     My home health care nurse visited today and after I gave her my history, she suggested I had been through a lot and should write a book. I told her I blogged a bit. While I have been through a lot, it's all still perspective. Compared to a normal person (whatever normal may be), I have had to struggle. I have an amazing support system, however, and always get things to work out for me. For now, then, I am going to keep my so-called problems where they belong: in quotations.

The Hope is There is So Much to Feel Good About

This has got to be the good life. 

I haven't written in a long time because, honestly, I have been too busy enjoying myself. 

I began working with the Volunteer Lawyers Project downtown and I love it. I am working with a small spit-fire attorney who provides legal services to individuals with AIDS/HIV and who qualify financially for free legal aid. I have been doing a lot of research and have had the opportunity to meet with some clients. My supervisor and I had a long discussion about how, while I am not a minority (other than being female, which is hardly considered a minority anymore--and I am glad), I can relate to clients because I know how it feels to have extensive medical problems. My supervisor, who is a minority (hailing from Puerto Rico), also has this ability to relate to clients because she has lupus (which is also an auto-immune disease.) I feel blessed to work with her. She was telling me about how she had to take two years off because she had a really bad flare-up. It's hard to imagine watching that lady argue with the judge about how it's important to enter a letter into evidence...and scream about how ridiculous the opposing counsel is (in the privacy of her office, of course.) She, along with the clients that I am helping, prove that you can do anything, despite what hand God gives you, if you stay determined and don't give up. 

I also obtained a position as a research assistant to a professor on campus who is working on editing a documentary on the Attica Prison Riot. We are also organizing a conference on the Uprising which is now scheduled to be held in Buffalo on September 12th and 13th. I am super excited about this project because it combines two of my greatest interests: Prison and Feminism. We are planning on doing a whole panel at the conference on the effects of the riot on women in prisons and the gendered ideas of correctional institutions. (I am also getting paid to do this, which helps with the grocery bill :) ) 

Between my two positions, I am keeping busy with social activities. I forgot how much fun life can be. Seriously. My friend Kristin, who is going to be the best teacher I know as soon as she finishes one more semester of graduate school, wrote a paper after interviewing me on how having a chronic illness affects one's life: academically and socially. As I answered her extensive interview questions, I realized how much my disease has held me back socially. Now I feel like I am trying to do everything just to make up for lost time. 

I went home last weekend to watch one of my best friend's sisters get married (and enjoy the open bar)...which is something I probably wouldn't have been able to do if I were sick. I then went to Elmira with Miss Kristin to visit our Alma Mater. It was great to be back and to be able to actually spend the night at someone else's house without worrying about getting sick. 

                            Me, Kristin, Jess, and Billy @ Jenny's Wedding
 
This weekend I am going home to see my sister before she treks to Kentucky for the summer, where she will be doing breast cancer research. That girl is going to change the world.


In other travel news: I will be flying to Boston in two weeks to visit a bunch of my college friends who live out there. I am so excited. I haven't been able to travel anywhere for an extended period in a long time. I will also be driving to Kentucky for the Fourth of July to visit Miss KatieGrace. 

I have been spending a lot of time with my friends in Buffalo. One of the things I also realized when answering Kristin's questions: chronic diseases also tend to keep people from engaging in romantic relationships. I told Kristin that I had only ever had one boyfriend and I broke up with him after 3 weeks because he annoyed me. Other than that, I just haven't been interested in boys. I lot of this disinterest probably comes from having to explain my body to someone else, especially a boy. People are scared enough of rejection: people with chronic illnesses have so much more baggage that needs to be accepted. A landmark occurred for me a few weeks ago when I actually shared my bed with a boy. Usually if a guy friend needed to spend the night, I would make him sleep on the miniature sofa in my living room for fear that he wouldn't understand why I got up so often in the night. Since my surgery, I sleep though the night with no problems and, thus, I am not so ashamed or worried anymore. 

One of the big social events that has happened recently: Take Walks 2011! This past weekend, my gram, mom, Jessica, and Mrs. Phillips (really, my second mother) came out to Buffalo and walked with me to raise funds for Crohn's and Colitis. It was a beautiful day, although a little chilly by the waterfront. There were so many people there! It was a great event. I want to specifically thank everyone who donated: Amanda Strathearn, Aunt Linda, Dave Nelson, Diane and Randy Scott, Gram and Grandpa, Jen, Bill, and Abby Wilkinson, Jerome Loudin, Jess Phillips, Mom, Sarah and Shane, The George Family, Uncle Scott and Aunt Paula, and Mrs. Phillips. Overall Sticks and Stones raised $705. The Buffalo Take Steps Event, to date, $52,941.05! 

                   Gram, Mrs. Phillips, Me, Jess, and Mom @ the Take Steps Walk

I can't wait until next years event! 

So, that's why I haven't written in so long. I have just been too busy being happy and enjoying life. 

While I still have to make the occasional trip to see my surgeon (I went last week because the skin around my stomas is getting red and irritated...I have another appointment Friday with an ostomy nurse and I will probably have surgery again in July to put Stoma Jr. back into my abdominal cavity), this has got to be the good life. :) 

 

SMH. RME. EC.

      All of my law friends have been using the abbreviation “SMH” the last few weeks and for weeks I pondered its meaning. I finally looked it up on Urban Dictionary to discover that there has been a lot of head shaking by law students recently.

                 

     The events of today were not horrible, but they certainly made me SMH. They then made me roll my eyes (RME) and eat a cheeseburger (EC). I had an appointment with my gastroenterologist today up in Rochester. I have not seen the man since he visited me in the hospital in December and I would prefer not to see him again. I am sure he is a great person and an intelligent doctor, but he simply lacks social skills and almost seems intimidated by me. I decided to take my brother up with me, so we could get dinner together afterwards.

                

     Our outing started off well: I picked up my prescription at Rite Aid and then we went to the library, so my brother could pick out a book for his upcoming book report. I found a few Scott Turow novels to get me back into the legal mindset. We were then off to Rochester. Driving into the city, I was trying to be nice and let a gentleman attempting to pull out go in front of me. He was too busy with his cigarette to notice my act of kindness and instead I was honked at by the impatient vehicle behind me. SMH.  I was early for my appointment and only had to wait five minutes past my scheduled time to be called back. My vitals were taken and I was shown to an exam room…where I spent the next fifty minutes alone. I had time to text complaints to my brother and Kristin, write a poem and send it to my dear friend Van, fill out an application for a Metro pass, clean out my wallet, examine the poster of the digestive system, noting all the organs I am missing, and work up the frustration to confront my doctor when he came in about the ridiculous wait I had incurred. SMH. RME.

                

     A nurse finally came in and I tried my hardest to seem pissed off, but I just couldn’t do it. She was very nice and had clearly read my chart before entering (maybe that is what caused the delay?). I did not appreciate when she started in on telling me that I had been through a lot and how awful it all was. Yes, I know. I lived it. I don’t need your pity. I’m not dying. I am absolutely fine. Could we talk about something else? She told me that I was gorgeous and you would never know what I had been through. There was no way I could be stern with this woman. Instead, I politely answered her questions and listened to her suggestions (my magnesium, potassium, and calcium levels were low the last time I had bloodwork done—but apparently it could just be because I am so little. My theory: When my blood was last drawn, I hadn’t eaten in a few hours. Who knows?) She then left me to myself again. SMH.

                

     Luckily, only ten minutes elapsed. Dr. Saubermann peeked in the door with reservations. I rudely finished my text message before shaking his soft hand. He informed me it was good seeing me again, but I did not believe it for a minute: If he was sincere, maybe he would have visited me more often in the hospital. I cannot even remember what we talked about in the two minutes he spent with me before asking to take a look at my stomach. I showed me the hole in my tummy and then he pointed to my fistula (Stoma Jr.) and asked, “What is under there?” Um. Seriously? What do you think? I explained and I knew he wanted to see my stomas, but he didn’t ask, so I didn’t offer. He looked at me confusedly when I told him most of my output came from my fistula. I had to further explain that it was located higher in the intestine than my actual stoma. He asked something and mentioned the absence of my rectum. Clearly, someone did not read my chart. I informed him I still have my rectum. “Dr. Salloum didn’t remove it?” Obviously not. I just told you I still had it. “Is he removing it next time you go in for surgery?” No. He’s not. “Oh. Well….*pause* *pause* *awkward pause* I’ll have to talk to him to see what the plan is.” Actually Dr. Saubermann, I know what the plan is. He plans on letting me keep that organ, so how about you just keep to your research and let someone else with more social skills and surgical knowledge deal with my organs. He then tried to make small talk by asking how school was going. It’s not. I had to take the semester off. Thanks for reminding me. I told him I was doing an internship with an attorney who provides legal aid to individuals with HIV/AIDS who cannot afford it. He suggested that it sounded fun and wished me luck. He would like to see me back in six months after my next surgery. SMH. RME.

                

     I went to the check-out counter where I paid $20 for a waste of my time and then politely asked for a comment card. If I can’t express myself orally to my doctor, I will write a nice letter about how disappointed I am with my care. I will work on oral confrontation some other time, as I will need to master it before pursuing my future career as an attorney. I apologized profusely to my brother who was stuck in the waiting room this whole time listening to two elderly strangers discuss their lives and preach about Jesus, Our Savior. Apparently he learned that we must accept death. SMH.

                 

     Luckily, while I was waiting in the hallway to use the bathroom before we left the building, I ran into one of the nurses for Dr. Salloum, who recognized me instantly and questioned what I was doing in the building. When I told her I was there for an appointment with Dr. Saubermann, she looked at me understandingly as she shook her head.

                 

     Steven and I went to get gas (I scored a deal, thank goodness. Fuel costs too much to be driving to the city for pointless doctor appointments). I was then honked at again as I pulled out of the station… I was at fault, but was not in the mood. I had already yelled at vehicle that couldn’t decide if they wanted to turn right or go straight when I was across from them trying to turn left at a four-way intersection. We went to Arby’s to get Steven dinner. I was probably asked five times if I needed any Arby’s sauce and had to wait forever for his food. The young man apologized, but I was just tired by this point. I stopped at McDonald’s because I was starving (I hadn’t eaten since breakfast) and we went home. SMH. RME. EC.

               

     So, all in all, it wasn’t a horrible day, but it certainly caused some frustration. I plan on asking my surgeon to take over as my gastroenterologist. I am not sure if that is even possible, but I feel I can guilt him into it: It’s the least he can do after mistakenly cutting open my small intestine during surgery. Everyone cross your fingers. Shake your heads. Roll your eyes. Eat some cheeseburgers. :) 

"An Apple a Day Keeps the Doctor at Bay" ...If You Have Enough Intestine to Digest It.

     Add apples to the list of foods I can no longer eat. It is hard to fathom that I can eat a greasy burger and french fries from Burger King and feel absolutely fine, yet I eat a peeled and cut up apple with some caramel sauce as a semi-nutritious snack and I am in agony for over 24 hours. I spent all of yesterday-from the wee hours of the morning until late in the evening- curled up in a ball praying that the apple would just move out of my intestine. I didn’t think that apples would be a problem if I removed the skin, but I clearly thought wrong. I was able to deal with the pain, however, and didn’t have to make a trip to the ER.

    

     In other Crohn’s News: I still do not have a colon. I received a letter from my previous gastroenterologist informing me that, according to their records, I was due for a follow-up colonoscopy. Dear Dr. John Doe, Tell your secretary Jane to check your records more carefully as I am no longer your patient and I know that you receive updates on my surgeries anyways via the University at Rochester system which states that I no longer have a colon for you to look at. I called them and, more politely, told them that I am no longer a patient that they need be concerned with.

     While I do not like my current gastroenterologist, Dr. Smith, I was not fond of Dr. Doe either. After I came of age and could no longer see the pediatric gastro, I began seeing Dr. Smith who was very cutting-edge. While he did a lot of research and was on the forefront of disease management, he was not very personable and almost seemed afraid of my assertive nature. I became fed up with his awkwardness and told him I planned on switching to a different gastro. I asked my surgeon who he suggested. He didn’t have any specific suggestions (well, the one doctor he did suggest was too close to retirement to take on any new cases, especially as fun as mine) so I ended up with Dr. Doe. The deal breaker for Dr. Doe was when I suggested a new medication that was not yet FDA-approved, but could be ordered through some independent drug manufactures (I really wanted to avoid surgery at all costs). It had been shown to improve symptoms drastically and I was willing to try anything. He informed me that it was “illegal to prescribe.”  Dr. Doe, It may not be in your best interest to prescribe such a drug, but it is certainly not legal. You are talking to a future lawyer. Thanks. Dr. Doe didn’t seem to know about any of the new treatments, FDA-approved or not. I couldn’t handle his lack of knowledge, so I asked my surgeon to contact Dr. Smith on my behalf to see if he would take me back as a patient. While Dr. Smith is still not personable (he only visited me once during my 46 day hospital stay) he will have to do. I see him Tuesday for a pointless visit. Who wants to make bets that he doesn’t realize that I no longer have a colon?

     I would appreciate if my surgeon would just double as my gastroenterologist. I think I cause him enough stress as it is, however. During my last visit he attempted to dress my wound, but did it all wrong. I watched him patiently, not wanting to be rude. He suggested putting more tape over the gauze and I told him that, “I will probably just redress it once I leave…” He stopped and looked at me. He then handed me the scissors and watched as I explained how I dressed my wounds. Surgeons just like to use way too much gauze and tape. Never let a surgeon dress your wound: ask an experienced nurse to do it.

     As I was leaving, I told him how I felt like a failure the other day at my brother’s basketball game because one of the boys cut his finger open and no one could find anything to bandage it with. I carry a whole medical pack with me full of ostomy and dressing supplies. I searched my medical back to find the poor boy a band-aid, but I didn’t have anything useful in my medical bag: just some ostomy bags and backs, a few pairs of scissors, and a couple feminine pads. I had no tape, no useful piece of gauze. I felt like a failure.

My surgeon looked at me with this look and told me, “Don’t ever feel like failure. You may be many things, but I failure is not one of them.” …I got home from my appointment and restocked my medical kit with everything you could imagine.

     My surgeon also told me that as long as I keep gaining weight (no problem there—I am always hungry) and getting stronger, I will be able to have my next surgery in mid-July. I informed a friend that I will be having my extra intestine sewn back up and put back in. I guess that wasn’t a sufficient explanation as I was then asked where the extra intestine currently was? Perhaps in the freezer? I will have the one ostomy reversed. They will suture the piece of intestine that is currently protruding from my abdomen and then, as my sister suggested, “pop it back inside.” I will then start my fall classes with only one ostomy.

     It is possible that after this surgery, I will be able to eat apples, as they will have longer to digest before being excreted. Until then, they certainly don’t keep the doctors at bay.     

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.