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.