Too healthy for this sick blog nonsense

It's been almost a month since I last posted, and for good reason. I am now a normal person and I have better things to do than use the Internet for therapy. Getting back to school has been great and I am happier than ever that I got surgery. I have my work cut out for me this semester: five classes, one part-time job, one internship, copy editor at the newspaper, president of the French club, DPE (Delta Phi Epsilon Professional Sorority)...and a social life. I am also trying to get some sort of IBD support group started at Georgetown and I have an appointment next week with Health Education Services. This is the way I like it!

For most people, how I feel would not be acceptable for someone else. I have cramps pretty frequently, especially when I eat or drink anything outside of a low-fiber diet. However, I know that I will get better and I am incredibly satisfied with the outcome of surgery. It turned me into someone who was not functional to someone who was functional. When people ask me how I am doing, it's hard to explain that I feel amazing because I haven't felt this good for years but at the same time, I could feel much better.

I saw my doctor, Dr. Charabaty this week and she reassured me that I was right on track and...get this, I don't need to see her for five months! That's quite an improvement from last year at this time, when I saw my doctor once a week. When I went to see my doctor, I found out her offices had moved. I miss the old receptionists the Georgetown GI department left behind, who knew me so well I didn't even have to check in. Dr. Charabaty gave me a big hug, which is a huge deal. I actually don't think a doctor has ever hugged me before. She told me that I looked great, so great in fact, that she would put that in her notes.

Life is good for me and will only get better.

MY HERO, Dr. Varma

Brilliant person + chubby chub cheeks = gold
Don't worry, I have two arms and Dr. Varma is not a giant.

Back to school!

It’s been too long since I updated my blog. I was busy studying for the GRE, which I hope to never see again after taking it a few days ago. When I took the test, there was a problem with my GRE computer station and it paused for 30 seconds between each question. Long story short, the test took me almost six hours! I had special accommodations with extra breaks because the surgery was recent enough that cramps can get the better of me sometimes. Luckily, all that studying (because I had nothing better to do in my convalescence than brush up on obscure words no one uses) paid off.

In other news, I had my farewell appointment with Dr. Varma today. My abscess has healed over and the scar should shrink more in the coming weeks. The area right above my scar can hurt quite a bit if I walk a long ways or bike uphill. You can feel it from the outside because it’s firmer when you poke it (a major activity around my house). Dr. Varma told me that although on the outside the scar is horizontal, on the inside there is vertical stitching, so it is not surprising that the area above my scar has internal scar tissue that hurts when I stretch the muscles underneath. It should soften over time, but for now I just take Advil. Unfortunately, the scar tissue makes exercising a little daunting. Of course, it’s really nothing compared to other things I’ve been through.

Although I’m still going to the bathroom many times a day, about 10, I’m not having as many cramps. It really depends on what I eat and the time of day. Fiber and nighttime give me cramps, so I avoid eating fiber at nighttime because I wouldn’t be able to sleep well. I definitely could be better, but I’m still in the recovery period. I am learning more about what foods are good and bad. For example, pancakes are great, but tomato sauce is bad. I still have to drink a lot of water – if I don’t, I notice because I get dizzy. It will always be that way. I will be off prednisone in a few days. As far as I can foresee, this will be the last time I am on huge tapered doses of prednisone! So if you were hoping for some chubby cheeks in the years to come, I’m sorry to disappoint you.

All in all, I’m doing so much better than I was a year or four months ago. I’m never in the kind of pain I was before, the kind of pain that dictated my life. Whereas before I had to plan my life around the bathroom, now I plan (or not really plan) the bathroom around life, which is what most people do. I can see a friend without wanting them to leave so I can be in pain in peace. I can go to the movies and not worry about not enjoying the movie on account of terrible cramps. I can eat a hamburger! 

One of the most important differences is that I don’t think about being sick anymore. I no longer have remission, flare-ups, medications, pain, and an uncertain future floating around my head. I have more normal worries: “What classes am I going to take next semester? How am I going to fit all my belongings into two suitcases when I go back to school? I should really stop procrastinating on that application essay.” Or just…“I’m tired.” I am already busy formulating plans for the years to come. It’s a relief not to worry about how I am going to pursue my aspirations because of the UC obstacle. At this point, I don’t even realize how different my life is because I’ve gotten used to it. I think I am starting to make the transition from being defined by UC and the surgery (at least that’s the way I felt I had become, even if I pretended otherwise in some situations) to just having one less organ than most other people. In a few days, I'm going back to Georgetown, where I will be the over-scheduled Georgetown student I was meant to be. 

It's Getting Better

Last week I went for a check up with Nurse Lois Anne to see how my abscess was doing. She told me that it was much more shallow (which I wouldn't know because I actively avoid looking at it) and gave me a cream with silver nitrate. The cream helped cauterize the inside of the hole, which basically means it made the inside less soft. Since I started using the cream, the hole has healed at lightning speed. There isn't anywhere for the gauze to go at this point!

I've been having tons of cramps lately because I had a series of inadvisable : banana cream pie, tomatoes, chili flakes, cream cheese, and alcohol (for my 21st birthday). I then went on a "BRAT" diet consisting of bananas, rice, applesauce, and toast. I feel better but not as well as I did before I went on my delicious food binge. It's hard for me to sleep at night because for some reason when I lie down I start having cramps. It's also hard for me to sleep in because prednisone gets me up early even if I'm tired. I know that it takes a long time to feel 100% better - about a year. It's tempting to start imagining the surgery didn't work or I have pouchitis, especially when I'm so used to waiting for the other shoe to drop. I just have to hold my horses and see how I feel in one month.

Wound Video

Based on popular demand, I have uploaded a video of me changing the dressing in my stomach hole. Watch at your own risk...it's pretty gnarly but fascinating. It's not particularly bloody. There's a hole though, after all.

http://www.youtube.com/watch?v=dpy1C54cifM

How My Incision Celebrated Harry Potter (Disgust alert)

Yesterday, the skin around my incision was looking a little red and swollen, but I wasn't sure if it was infected. When I woke up this morning, there was no doubt. {Gross alert} My superman pajamas (they weren't saving anyone today, clearly) had ooze stains and the ooze kept coming. Luckily, it's a week day, so I could go to my surgeon's office for a visit with Nurse Lois Anne. She told me that about 50% of patients' incisions become infected if they are stapled because bacteria can grow in the cavity inside. It's worth stapling wounds for the 50% who don't get infections. Essentially, I have an abscess draining to the outside. Yeah, great. My nurse cut my incision open, which actually didn't hurt that much considering all the other ordeals I have been through; about as much as it hurt to have my staples taken out. Then she drained the pus and washed it out. I didn't look because I was getting pretty revolted just thinking about what she was doing. When I looked over and she was coming at the incision with a numbing shot, my deep dislike for needles took over for a second and I almost ran away. Next comes the bad part. Lois Anne taught me how to "pack" the wound. I have to fold up a 2x2 inch gauze sheet and stick it in the incision with the end of a pair of tweezers. The purpose of the gauze is to absorb the drainage from the wound cavity, which is one to two inches below the surface. Besides the ooze and blood, for me, the gross part is that there is just so much space in that hole. So I have to keep poking the tweezer in there (with some force) until almost the whole gauze sheet has disappeared. Every time I have to change the wound, I have to pull the top of the gauze sticking out of my stomach and keep pulling until it all comes out. It's like a worm or something. I will have to do this twice per day for many weeks to come. Since the wound will heal from the bottom up, eventually there will be nowhere for the gauze to go, and I will be able to stop. The bad news for my scar is that it won't be so pretty! But I guess the worse it looks...the more bragging rights I have and ridiculous stories I can come up with? You can probably tell that although I can deal with lots of pain or time in the hospital, wounds are not for me. By the end of my "packing" tutorial, Lois Anne and I agreed that I probably shouldn't pursue a career as a surgeon. Darn it! I'm really not surprised that my incision decided to act up today because I know it just wanted to join in on the Harry Potter fun. It was getting jealous of all the attention being bestowed to Harry Potter and his scar. Maybe Harry and I could trade scars for a day?

What do I do now? + Surgery No. 2 Pictures

I'm out of the hospital! I got out yesterday and I spent a great day with my cousins. I got to take a nice shower (I'm really good at delaying hospital shower requests. Nurses can be persistent but I just do not want to know what kind of other operations or diseases people in those showers have had, no matter what disinfectants they may use. Sorry!). Interesting fact: doctors paint iodine on before surgery to reduce the risk of infection. Since I'm still recovering, I get tired easily and suddenly, but the thrill of being better usually overcomes the urge to nap. I walked a couple blocks with no trouble this morning, more than I could hope for just out of the hospital!

My main problem is getting up after I've been lying down. Since the stomach muscles required to get up are a bit much for my incision, I have a rolling method that is slightly ridiculous but effective. I am taking Percocet (oxycodone + tylenol; ask me for a review of narcotic drug classes and I can fill you in, or read a previous post about pain medications) around the clock because my incision starts hurting otherwise. Gradually I will decrease how many I take at one time and the frequency. I am going to the bathroom many times a day, but that is totally normal right after surgery and over time it will decrease. As it is, with no pain, I could deal.

I miss the nurses from Floor 5 North of UCSF! I got to know most of them and they took such great care of me. They also made me feel glamorous by telling me often how great I looked (aka: you are looking better than the other patients on this floor...the octogenarians).

Today I encountered an unsettling feeling: What do I do now? For the past couple years, I have always had a goal associated with my disease. It was usually among the following: get through today; get through this week; get through this semester; make it until surgery; make it until the next surgery, etc. Now I just have seemingly infinite time ahead of me. Suddenly the mentality of not being able to do certain things and limiting my expectations is gone. I am no longer a sick person; I'm a recently sick and recovering person who has no idea what to do other than read scifi books. So...I registered for the GRE. I got physical disability accommodations for extra bathroom breaks. This will give me a goal. Plus I have lots of time to study, if you haven't noticed. I didn't expect to have trouble adjusting to being normal but I guess that any adjustment, even if it's one for the better, can be troubling and simply take time. Once again, I have to welcome the change and resist the fear of the unknown future.

Now what you have all been waiting for:

Staples!!! And that's all the evidence of six feet less of intestine in the world.  It's slightly orange from  the iodine. 

This is pretty terrib...ly funny! Drunk leering pregnant lady recovering from a colectomy?

Sleepover buddy

My family breaks me out of the hospital

First meal out of the hospital