Good news! I've enjoyed another year and a half of good health and I've been making the most of it. Feeling that the European adventures that helped me recover my non-sick identity were not over, I decided to spend the 2013-2014 academic year as an English teaching assistant in Madrid, Spain. France is like a second home to me so adapting to life in Spain was the most challenging experience I have had since being sick. I appreciated the opportunity to devote my energy and anxieties to something not related to health. By the end of my nine-month stay in Madrid, I had become comfortable with Spanish culture and reluctantly moved back to Washington, DC to look for a job that better aligned with my studies. A month ago, I accepted a full-time job offer from a company in California. I feel incredibly fortunate to have a bright future that I would never have imagined just four years ago.

In August, I went backpacking in California with my family for a week. It was my first remote hiking trip since my illness and it was both scary and affirming. Backpacking food is not particularly j-pouch friendly (last summer, I got a blockage on the hike out from a short backpacking trip because I ate a really cold power bar that I couldn't digest) and our route took us far from any medical help. In the event of a serious blockage, someone would have had to hike 10 miles and up 2,000 feet of elevation gain to get a helicopter from the National Park Service. Waiting that long with the pain that accompanies blockages would have been torture. Nevertheless, I decided to go ahead. I try not to let hypothetical medical complications dictate my life or prevent me from participating in activities, like backpacking, that are important to me. My family was very supportive and made sure that I had the most j-pouch friendly food possible. The trip was fantastic and encouraged me to be adventurous in the future. Although getting up nightly was not a picnic, the wilderness is also a great place for j-pouches because behind every boulder is a potential bathroom. I really impressed my family with my quick trips. If only they were so lucky!

Last week I had a pouchitis scare that luckily had a good ending. In an effort to say goodbye to friends before moving to California, I have been eating out at restaurants more than usual over the past month. However, I generally avoid eating out because any food that is not simple is likely to upset my stomach. After a few weeks of lunches and dinners, I noticed I was going to the bathroom more frequently and had more cramps. Although I hoped I would feel better, I started feeling significantly worse and eventually came down with something that felt like food poisoning. I was very worried that I had pouchitis because unlike other stomach bugs I've had since surgery, this distress came on gradually. I called a few of my doctors to try to get a prescription for the standard pouchitis antibiotics (basically the only way to cure pouchitis) but didn't have much success because I hadn't been seen for years - I've been abroad. I did have a funny interaction with an advice nurse who was confused as to what my "pouch" was. No, I'm not a marsupial! The experience of negotiating with doctor's offices and feeling uncertain about my health was stressful and reminded me of the months I spent during my illness wondering if I would ever get better.

Surprise surprise...I completely fell apart and catastrophized about a trip to the ER in the event I did have pouchitis and couldn't get antibiotics. I am on my parents' health insurance until I begin my new job, and outside of the San Francisco Bay Area I only have coverage for ER visits. The situation made me feel vulnerable and slightly out of control. The idea of pouchitis terrifies me because I know it can become chronic. It wouldn't be as bad as Ulcerative Colitis, but still would involve cramps and many many trips to the bathroom. I have had an amazing three years after my surgery and I was devastated at the prospect of another trying health condition. Although I knew I had the strength to rise to the challenge, I couldn't bear the thought of it. Fortunately I felt much better after a 48-hour protein shake diet. The experience reminded me how lucky I am to be doing exactly what I want - living independently, working, traveling, socializing, and most importantly, taking my health for granted.

I had a thought-provoking conversation with a friend a few days ago about the effects of suffering on my relationships. For the first few years after my surgery, my illness was still a huge part of my identity and I felt like people who hadn't experienced it with me or hadn't suffered themselves didn't truly understand me. This week I realized that I no longer feel disconnected from non-sufferers, which means that I have moved on from UC in a substantial way. As time goes by, I am excited to see where my past leads me and what I continue to discover about myself.

July 4th in London!

Fewer organs, fewer problems

Hello again, I haven’t updated this blog in over a year because I’ve been doing very well. First of all, thanks to all of you who donated to the Crohn’s and Colitis walk. I really appreciated it.  

Since I last wrote, my pouch has learned how to be a better replacement lower intestine. When I look back at how I was a year and a half ago, I am amazed at my improvement. Although it was very gradual and the number of trips I make to the bathroom greatly depends on what I eat, my quality of life is dramatically better than it was in the months after my colectomy. MRSA hasn’t made a comeback for almost a year, and I’m crossing my fingers that I scared it off for good.

So what have I been up to with one less organ getting in my way? I just spent eight months in France teaching English in two elementary schools. I had a fantastic time and I’m going back to teach English in Spain in September. When I was sick with Ulcerative Colitis I was very dependent on my parents, and while it's good to be a little dependent on other people, I lost some sense of who I was. When I was sick, I was Ms. Sick, and my senior year of college, I was Ms. Not-Sick-Anymore. In France, people didn't know about my illness unless I told them. It was really empowering. And pretty cool to be able to say, oh by the way, I don't have a colon or, oh this scar is from when I was stabbed in a bar fight. Of course, I value my friends who supported me during my sick years immensely because that's when I learned what true friends are. As much as I tried to avoid letting my suffering define me, it has become an integral part of who I am, and I have learned that it’s much easier for me to relate to people who have also suffered.

In May, my parents came to Europe to travel in Italy and southern France with me. We hiked quite a bit in Corsica, which was the first mountainous hiking I’ve done for almost four years. It’s relatively easy for me to hike in wild places because practically the entire landscape is a bathroom, and there aren’t many people around to stumble into an awkward situation. I was careful not to eat adventurous food and I had no problems. Spending time outside is very important to me and my trip reaffirmed that I will be able to live a normal life. In fact, that’s what I’m doing right now!

Semi-outdoors situations are the most challenging for me because bathrooms can be few and far between or nonexistent, and the landscape is definitely not one big bathroom. I’ve never really had an issue, but semi-outdoors situations just make me nervous. Europe could be difficult at times because bathrooms are not regarded like a public good in the way they are in the US. In France, they have a way of making you feel so bad for inconveniencing them with the mere question of using a bathroom. In February, I had a bad case of food poisoning or the stomach flu that made me worried I had pouchitis (a bacterial infection with similar symptoms as Ulcerative Colitis that requires antibiotics), but after 24 hours it went away, and after one week I was back to normal. I tried taking the refrigerated probiotic VSL #3 that is supposed to really help J Pouches but I'm not sure how much it helped me yet. It may have coincided with a bad couple of tummy weeks (I started taking a vitamin that may have upset my stomach), so I will try it again after a couple more weeks. My life is a constant science experiment. 

What advice do I have for someone who is sick and thinking about surgery? It’s definitely a last resort because there’s no going back. My dad, who also has Ulcerative Colitis, has been remission for seven years and hasn’t had the surgery. Although he does have to live knowing that he could have a flare-up at any time and be very sick, he has a healthier diet than me and he doesn’t go to the bathroom as much. For other UC sufferers, however, remission may not seem likely. Some of the drug combinations, like Remicaid or Humira and Azathioprine, are terrible for you and not worth taking if they don’t work (get outta here, leukemia). The surgery really can cure UC and make a normal life possible again. The day of my first surgery was the best and happiest day of my life. That said, the surgery doesn’t always work and can involve horrendous complications. There’s a tradeoff, like everything in life, and I think the patient is the only one who can make an educated decision about their body. It's also helpful to keep the big picture in mind; this too shall pass. As bad as a situation can be, there's a 100% chance that it's not going to stay that way. It could get worse, but hey, it's going to change. If it gets worse, you can look back on the good times, and if it gets better, you can look back at how far you've come. 

What advice do I have for someone who has a sick friend or loved one? Firstly, you don’t know how they feel, so that’s not what they want to hear. I believe the best thing you can do is just be a good listener. Many people are sick often feel isolated because those around them do not share their experiences, so simply listening to those experiences can make them feel better. Sincerely asking “How are you?” is really appreciated. Other than that, helping with practical things like picking up prescriptions (thanks Ghislaine) and grocery shopping (holler, Vik!) makes a big difference for people with UC or Crohn's. It was really difficult for me to walk the mile to CVS and back when I was a student at Georgetown, and when a friend offered to get something for me, it made my week.

Although terrible things happen in the world every day, when I was sick, I encountered an overwhelming amount of good from friends, family, professors, health professionals, and colleagues.

Me in Corsica

Take Steps for Crohn's and Colitis

On June 9^th, I will be participating in the Take Steps for Crohn’s & Colitis walk, the nation’s largest event dedicated to finding cures for digestive diseases.  If you follow this blog, you are aware of how Ulcerative Colitis changed my life and caused me pain that no one should have to endure. In June, I am walking with Team UCSF because I want to save millions of people like me from my suffering. I just graduated from Georgetown on time, even with a semester of medical leave, and with honors, despite the endless doctor's visits, daily unbearable pain, nausea, fevers, fatigue, weight loss..the list goes on. There is nothing I would appreciate more than a gift that would help the sick.


Please donate only as much as you are comfortable with. Every little bit will help. You can donate here: http://online.ccfa.org/site/TR/2012TakeStepsWalk/Chapter-NorthernCalifornia?px=2228852&pg=personal&fr_id=3320

A Visit from MRSA and what lies ahead

A couple weeks ago I ended up in the hospital for a condition unrelated to my intestines, a refreshing but boring experience. Long story short, I contracted Cellulitis, a deep tissue skin infection, on my face. In fact, it was in the "triangle of death," the area above your nose and between your eyebrows. Apparently, since veins run from the "triangle of death" to the brain, any infection is a big deal. After my face swelled up and I looked like an alien, I walked to the Georgetown Hospital ER and learned that Cellulitis was the culprit. It is usually caused by Staph or MRSA (drug-resistant staph).

Although Georgetown gave me a dose of IV antibiotics and some antibiotics to take home, a few days later Cellulitis made another appearance. I went straight back to the ER, not expecting a long hospital stay. That's what I got. I felt fine and looked fine because the swelling had subsided but the doctors were not taking any chances. They did a test for MRSA that came back positive (and only then did they decide I should be in isolation...after I had been in a double for four days when they knew I probably had MRSA). Then they finally let me out and I headed straight to a party. I mean, it's me after all.

MRSA made my plans for a rafting trip down the Grand Canyon out of the question. Initially I was uncharacteristically upset, and after I reflected on it, I realized that it was about much more than missing a really deep canyon. The trip was a symbolic culmination of my post-surgery life, an adventure that would have been impossible with Ulcerative Colitis. I would have been on a raft around seven hours a day, a nightmare for anyone with bad UC or Crohn's. I would have been with my family, the people I care most about seeing me healthy and happy. Then I thought about how well my recovery has gone, and I realized that the Grand Canyon would have been just the first of many outdoor adventures. I am more committed than ever to taking a long backpack trip in Yosemite this summer, my favorite place in the world. So I felt a little better. I also took advantage of my free time (I had done all my schoolwork early) to dominate the Assassins game I was playing. My spy mastery made me feel very accomplished and reconsider a career in the CIA. Cellulitis has not been seen since (I clearly killed it, too).

I could elaborate on my hospital stay - it made UCSF seem like a resort - but the most relevant item to UC was the issue of antibiotics. Antibiotics are never a good thing for someone with intestinal issues because they clear out the "fauna" in your intestine and make way for nasty bacteria like C-Diff or pouchitis. When I got MRSA, I thought it was just a matter of time until my J-pouch started acting up. In the past few days I have been going to the bathroom about 10 times a day, which is much more than the usual four. I can't know if it's pouchitis until I have been off antibiotics for a while, but I'm crossing my fingers.

In terms of future plans, I accepted an English teaching position in Bordeaux, France for the 2012-2013 academic year. I am so incredibly excited and ready to put my adventure hat on again. It's been too long! This summer I'm going back to California to save money for the travels I'm already planning. After a couple of brutal years, I am ready to have some fun.

Unfortunately, one of the members of my IBD support group had a bad turn with Ulcerative Colitis/Crohn's and she has to have an emergency ileostomy surgery that will likely take place tomorrow. Please send good vibes to Meredith, who has been such a champ in the past year.

After I assassinated people

Happy Trails

On the beach in Hawaii, getting in fish camouflage before snorkeling

Quite a bit of time has gone by since my last blog post, which shows how well I’m doing. Although my recovery is now very gradual, I am much better than I was four months ago. I am much more adventurous with food now – over the winter holidays I had deep-dish Chicago style pizza, also known as tomato central. I hadn’t any for more than three years and it was just as good as I remembered! I still avoid certain foods like lettuce, raw onions, spicy things, and caffeine. While some people might be glad they could avoid lettuce, I actually really like it (…but for the salad dressing, of course). Maybe I will try eating some in a few months.

I also went backpacking in Hawaii over the winter holidays! Initially I decided not to go because I didn’t think I was up to it. As the rest of my family got ready to go, however, I realized I was done with being a “no” person and since my family would support me if I had any trouble, a trip with them would be the best possible way to get back into backpacking. And I am so glad I made that choice! To my surprise, there were actually compost latrines by each campsite, so it even surpassed my expectations. We hiked over twenty miles on lava flows and camped on the beach beneath coconut palms. We even got to snorkel in a coral garden that was incredibly pristine because it was ten miles from any road. I finally felt like I couldn’t be farther from being a sick person and I was so happy that my family was with me to share in my high spirits. We all say that the surgery was a miracle.

In other news, my irritable bowel disease group has been going very well. We have been growing in number and I hope that it will continue after I leave Georgetown. As I embark on an internship with the Department of State this semester, make plans for the summer, and make plans for next year, UC just seems like a short and miserable detour that will diminish in importance as the years go by.

Inspiring story of another UC-sufferer

As you can probably guess, things are still going really well. I am much better than I was just one month ago. My cramps are much less frequent and more related to what I eat than omnipresent like they were before. I can tolerate tomato sauce more easily, so hopefully in a few months I will be back to tomato sauce feasts (one my favorite foods of all time before I got sick was puttanesca tomato sauce straight from the pot). There’s a possibility I have a hernia on my incision because there seems to be a gap in the muscle  but I have to wait for the results of a CT scan to find out with certainty. Meanwhile, I am deciding on my post-graduation plans. The ideal scenario would be to have a paid summer internship in France and then teach English in Spain for a year. We’ll see if either of those things happen, but the most important thing is that now living in France or Spain is actually an appealing option!

We had our first meeting of an IBD support group through Health Education Services this week and it was very successful. We only had five people (including me, a former roommate who had a colectomy for UC,  and a nurse from Health Education Services) but we didn’t put up many fliers and it was our first meeting, after all. Still, one student with Celiac Disease saw a flier and was brave enough to attend. It turns out her roommate has Ulcerative Colitis. I really do not know why people who suffer from digestive diseases seem to end up as roommates. I met the roommate with UC, Meredith, and she is an inspiring person who doesn’t let a terrible disease ruin her life like you might think it would.

Meredith is a junior at Georgetown and she was diagnosed with UC about eight months ago. She had a really severe case of colitis, toxic megacolon, which can be fatal. Needless to say, she was in the hospital for two months on dilaudid and almost had an emergency colectomy on a few occasions (with toxic megacolon, sometimes it’s a colectomy or death). I am sure that this was much, much worse than anything I have ever experienced. She dropped a few of her courses and finished two over the summer. She survived on picc lines and IV nutrition. When she was released from the hospital, she was on incredibly high doses of narcotics …but she finished her courses anyway. Meredith eventually responded to cylcosporine, a drug that prevents transplant rejection (an autoimmune-related issue, just like UC) Humira (shots of immunosuppressants that I took as well at one point but did not respond to), and 6-MP (a form of imuran, an immunosuppressant drug, that enabled me to come back to school the semester before I got surgery).   

Amazingly, Meredith went to Rome last summer with Georgetown’s chapel choir. Although she was very afraid and had to show her chubby prednisone face to the world, she was able to have a great time. Instead of clubbing with the other trip members, she went back to the hotel to sleep. She is now back at Georgetown and has to take oxycontin and oxycodone to make it through the day (one is fast-release and the other is slow-release). She is still taking the cancer-causing combination of Humira and 6-MP. She doesn’t eat wheat, dairy, or sugar. It is easy to discern how incredibly difficult her life is, but she still has a great attitude. She is even planning to study abroad next summer in Egypt. I don’t doubt that she could do it. I was so impressed by her courage and perseverance. So there’s a little inspiration for you.

On a slightly related note...

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

Can I Stay or Can I Go?

The doctors can't seem to decide. Until noon today, I was all set to go. IV sites have to be changed every 72 hours and my nurses told me that the fact I had been given a 24-hour extension on my IV meant I was definitely going home. Just kidding! When the surgical team came in this morning to take out my staples, they informed me that the surgeon on call had decided to keep me for an extra day in case I got dehydrated. I feel fine so it's frustrating (but my family is going to a birthday party tonight so I'd be more annoyed otherwise). I can see why the doctors need to be cautious, especially considering how they let me out too early after the first surgery and I landed in deep trouble soon after. Today they did tell me that if I really really wanted to go home today I could, but they were looking at me like I would officially be an idiot if I did that. So I'm still here.

As for the staples, they have been replaced by long clear strips of tape. I didn't want to look at them being taken out, but my friend Anthony did, and he said that it was impressive how easily they came out from their size and how firmly they were stapled in. The tape will gradually curl up and come off, and is mainly for cosmetic purposes of my scar. Of course, I am super concerned about having the prettiest colectomy scar ever seen, so I will take good care of the tape. I don't want to look at it, much less scrub it. The doctors told me not to scrub my incision and I looked at them like that was the worst idea ever. They said, "Well, you'd be surprised. Lots of people try to scrub." There's still a chance my incision could become infected but it's unlikely.

Aside from my frustrations, I have been feeling better than I thought I would. This recovery was relatively easy in comparison and I think I could be out and about in not too long. My incision definitely hurts, but it's nothing like a blockage or an obstruction. Let's hope that I really do get out tomorrow!

It's all relative

I feel much better today and I have passed some significant milestones. Walking around is much easier and less painful. It also really helps diffuse stomach pains from my digestive system waking up. This morning I started going to the bathroom, the normal way, after that silly bag business for two months! It's so nice to feel like a human being again, not a poop bag lady (to put it bluntly).

The doctors unplugged me from my IV pole because I have proved that I can drink enough liquids on my own. Now I can move around freely and jump from my windowsill to my bed. Just kidding.

I am now on pain pills instead of liquid painkillers. Although pills aren't as strong as liquid painkillers like dilaudid or morphine (which I was on until this afternoon), they last longer in the system as long as they can be absorbed well enough. After I had been drinking liquids and keeping down jello, my doctors moved me to pills, which I prefer, because liquid painkillers make me feel pretty strange and they wear off quickly.

My surgeon said I could switch to a full liquid diet today, so milkshakes and pudding should be allowed, but somehow it didn't get put in writing so I am still eating jello. They only seem to have three flavors here: lime, lemon and orange.

In other news, they took off the bandage of my stoma incision site. I was expecting something circular maybe, considering how my stoma was circular, but of course it isn't. It's about two inches long and has four big staples attaching the two sides of the incision. If I leave the hospital on Saturday, I will probably have to come back in next week to have them remove the staples, but if I leave later, they will remove them before I leave.

I'm still getting used to having everything back where it should be. Now that I don't have my external bag, I realize how much it sucked. It truly was inconvenient. I'm so glad they could put me back together. Now I can wear all those short shorts I was missing out on in the beginning of the summer. I am really looking forward to getting out into the real world.

I am now both okay and coherent!

One day after surgery, I am already doing much better. I am no longer overwhelmed by words (my solution: misspell them) and I have a pretty good idea of where I am: the hospital. But actually, recovery this time around is much easier and I have learned many things.

My actual surgery was longer than expected because my surgeon found quite a bit of scar tissue behind my stoma and at the end of my upper intestine. That probably explains why I had a bazillion blockages - the scar tissue blocked up the food passage. My surgeon cut the scar tissue, but it is likely to form again over the years. While this means that I am more likely to get blockages or obstructions than other people with my surgery, it still doesn't mean that I will be likely to get blockages. As long as I don't have more than two blockages or obstructions per year, they won't do surgery again to cut the scar tissue again. Each surgery carries risk with it and sometimes trying to eliminate scar tissue just creates more of it.

I didn't move at all until this morning, when I tried to take a walk. It didn't work out so well, meaning that I stood up and felt so nauseous and dizzy that I sat right back down again. I had started to turn white and my nurse was just staring at me and telling me I wasn't breathing correctly (no duh!). I was upset because I am accustomed to succeeding just by trying hard enough.  Just standing up made me so exhausted that I slept for an hour. Well..then I had some jello (and only one day out of surgery!), which gave me enough strength to go on a walk a few hours later. It hurts my right side quite a bit to walk, the side where my stoma RIPs and my scar now resides. Later today I took another walk and I went two entire laps around the floor! The more I walk, the sooner my digestive tract will "wake up." It's been asleep since yesterday morning, and I can't leave the hospital until it starts working again. One interesting thing is that doctors still do not know why the digestive system "goes to sleep" and later "wakes up."

I found out that my wound from the stoma was stapled. Based on how it looks during surgery, the surgeon will staple it or leave it open and pack it with gauze (kind of gross). The point of leaving it open is to avoid bacterial infection if the patient looks like he or she might be prone. Luckily, my surgeon stapled me, so it won't be as icky. I have been known to faint from the sight of my own blood!

Last night my mom slept over with me in the hospital and I am pretty sure she took some embarrassing pictures of me making unladylike-drugged-out faces. Today my sister and her boyfriend came to visit, and tonight my dad is coming to stay over.

im ok

i woke up from srgert and im ok. i sleep and then open one eye and sleeop.cthis surgery is easier.  but im still tired. i vant see my  stkma holwm bwcayse there is a bandage. it hutys so much

Surgery #2 in Sight (Graphic stoma picture alert. Beware)

Tomorrow, at a whopping 108 pounds, I will head to the hospital for my second surgery, when the surgeons will put my stoma (the cuff of my upper intestine stitched to my stomach) back inside and reconnect my digestive tract. I am pretty excited to get rid of my stoma, as much as I love it (not).

Today I have been on a jello and popsicle diet. This morning, just for fun, my upper intestine decided to have one last blockage. After I had thrown up enough times, I felt a little better. Still, I've been told before that I should go to the ER if I throw up during a blockage. I spoke with my surgeon and she told me that if I could manage to keep liquids down, I didn't have to go (otherwise, dehydration would be a problem). And in the event I did, I should skip the ER and check right in to the hospital, where I would stay until surgery. As usual, I drank a lot of water, and since I'm not supposed to eat anyway today, I was already on a liquid diet. Luckily, my upper intestine quieted down and I got to spend the day sleeping instead!

My recovery process in the hospital will probably be like this: Tuesday and Wednesday I will be on high levels of pain killers so I won't remember much. Hopefully I can get a morphine post in there. Thursday I will be given control of my painkillers, which will be at lower levels, and I will be given jello to eat. Friday I will move on to pudding and cream of wheat. Saturday I will be given plain foods like plain pasta and plain turkey. I will probably leave the hospital Saturday, Sunday or Monday. 


Important items I am bringing to the hospital:
-Game of Thrones: the book..so excited!! I've been saving it
-Bop-it
-Growable cat
-Phone so I can call people and have memorable conversations with them that I will not remember
-Camera so that I can document my scar from day one
-Toy truck
-Superman pants for good luck
-Computer so I can watch movies, such as Planet Earth (the snow leopard chase scene is out of this world!) and write posts under the influence for posterity
-Sudoku
-Crossword puzzles


Here is a picture of what my stoma looked like a couple days ago.

This is not a parasite from a scifi movie. Also, the shadows are from a tree shading the window. 

The white powder is stoma powder, which I put on the skin around my stoma because it gets really irritated. The lower intestine takes out digestive enzymes, and since I don't have my lower intestine anymore, whatever comes out of my stoma essentially eats my skin if it touches it. I have to be very careful to place the adhesive bag in the right place, or else my skin hurts whenever I move. You can see that the color of the stoma is pretty similar to the inside of someone's mouth. Any guesses as to why? The same tissue lines the entire digestive tract (mouth included). RIP Stoma, it's been a wild ride!

A day in the life of an ileostomy recovering from surgery

1. Check to see if Kitty is up. If she is not, wake her up, obviously.
2. Drink some chocolate soy milk to get the day going.
3. Check to see how Mr. Stoma is doing. Does he need some attention?
4. Drink a 350 calorie milk chocolate protein shake. Magic in a bottle! Plus, that's the best flavor. 

5. Check my email. 1000 people have not emailed me? How rare. Spend 30 minutes keeping someone company while they are at work by gchatting them. 
6. Eat some goldfish. The current goal is six servings a day.
7. Write some old fashioned letters because I am the one last person in the world who has time, then stop half way through and lose them. It's the thought that counts.
8. Drink four cups of water in row because I forgot to drink enough.
9. Think about practicing violin.
10. Read some news headlines.
11. Eat some brownies.
12. Wait for people to call me. It's awkward to call other people because they probably have things to do and will be busy. Better to wait.
13. Eat a sandwich.
14. Read a chapter of a book that will make me feel smarter, preferably written by a famous dead person.
15. Drink another 350 calorie protein shake. Mmm so good!
16. Watch a bad summer TV show. Wonder where the last forty minutes of my life went.
17. Clean my room badly. Every day I get it messy again because I am lazy. It was also probably never clean in the first place.
18. How are the goldfish doing? They probably need to be eaten.
19. How is Mr. Stoma? He is usually quiet in the morning so he doesn't need attention until the early afternoon.
20. Think about practicing violin.
21. Study for the GRE for 20 minutes. Don't mention how obvious my dearth of vocabulary is to my mom, who will remind me how lazy I am. "You're so well read but your vocabulary isn't very good! Do you even look up words you don't know?" No...who does that?
22. Look at news headlines again.
23. Where has Kitty been all this time? She definitely has been up to no good. She could use a walk around the garden, a tummy rub, a brushing or just some loving. 

Kitty was in the bathtub! One of her favorite hangouts.

24. Eat some milanos.
25. Time for the daily cup of ice cream.
26. Drink some water.
27. Errand with mom. Too bad I just drank so much water because I now have to pee every ten minutes.
28. Mr. Stoma has gotten carried away. Afternoons and evenings are busy times for Mr. Stoma.
29. Worry about pouchitis. Find some worrisome blogs about pouchitis.
30. Drink some water. 
31. Find some interesting facts, such as: Dwight Eisenhower had Crohn's disease and had emergency surgery for an obstruction during his first term! If he, a bald man with Crohn's, survived being president for eight years, then I, with a nice head of hair and no Crohn's, can survive too.
32. Drink another protein shake. I mean business.
33. Have awkward phone conversation with a friend. What have I done today, you may ask? I don't know where to begin.....
34. Drink some water.
35. Check on the cat I am growing:

36. Read some news headlines. It would suck to have UC or Crohn's in Yemen.
37. Skype someone.
38. Mr. Stoma needs attention.
39. Cat has grown

Note the deformed face

40. Kitty is probably lonely. Let’s play, Kitty! I don’t care if you are 95 in human years. Mammals should be friends.  

Kitty, how could that position be comfortable? Stop getting your fur everywhere. Why are you doing that? The mysteries of feline behavior.

41. Where did the day go? It's already dinnertime. Not hungry but priorities are priorities. Some pasta with tomato sauce would hit the spot, as it has practically every night since surgery. Luckily, I live in the New World, where tomatoes can be found in abundance.
42. Show growing cat to Kitty. She knows what is going on. She starts drinking the water, the life force of the growing cat, to eliminate the competition for my attention.

43. Parents are home.
44. Eat some milanos and finish the goldfish.
45. Time to read, or just think about how rewarding reading could be.
46. Time to check on Mr. Stoma before bed. Where is Kitty? Oh yes, waiting for me. We read together for an hour before sleep. 

She really sleeps like this

All in all, a better day than days were for a long time, and one day in a string of better days that just keep getting better.

Good to go

Yesterday I went to UCSF for two pre-operation appointments, one with my surgeon, Dr. Varma, and one for an x-ray. Dr. Varma answered my questions, like how long recovery would be from the second surgery and what it would be like, as well as the risk of complications. This time my recovery should be shorter, so I will probably be in the hospital for five days, but it really just depends on how well I feel once I start eating food again because everyone is different. Complications can always happen, and the worst possible case would be incurable pouchitis. About 30% of patients get "pouchitis," which is inflammation of the pouch, sometime in their lives after the second surgery. The symptoms are similar to ulcerative colitis but with less pain. Most of those patients respond to antibiotics and pouchitis does not return, but a small percentage of patients do not respond to antibiotics, develop chronic pouchitis, have their pouch removed and live with the bag for the rest of their lives. That would be pretty unfortunate, but still better than living with ulcerative colitis. At this point I have adjusted to the bag, although I will admit that I can't wait for it to be gone. Taking probiotics like VSL#3, which is a packet of billions of bacteria that you pour into a glass of water (I took VSL#3 for a couple weeks in the spring as a last ditch effort), might help prevent pouchitis. Dr. Varma reminded me not to think about what-ifs and just focus on the next couple months for now.

My second appointment was one of my favorite appointments ever. They did an x-ray with dye contrast of my intestines to make sure that there were no leaks in my pouch and surgery could proceed. Remember, the whole point of waiting two months to reconnect my digestive tract is to let the pouch heal and thereby prevent leaks to my body cavity and some pretty serious complications like blood poisoning. The actual x-ray experience wasn't particularly fantastic...you don't want to know the details, trust me...but then I got to see the x-ray! I could see my pouch because it was darkened from the dye, the hole of my ileostomy and the end of my upper intestine. It looked just like the diagrams from the doctor's office! I was surprised by how narrow my upper intestine looked and I could see why it would be painful to eat anything and get it through that narrow space. Unfortunately I forgot my camera so I couldn't take a picture of the x-ray. I was also just amazed that doctors were actually able to rearrange my plumbing so...artistically and successfully. 

I am now taking only 5 mg of prednisone per day and I am definitely feeling the effects. I am having more painful cramps and I am not absorbing food as well. I can tell because I can drink four cups of water in a row and not have to go to the bathroom. Not a good sign! The cramps are noisy and they sound like a stream gurgling. I can feel them start midway through my upper intestine and snake down to my ileostomy so I've figured out exactly where the bends are. It's pretty awkward when those noises interrupt a conversation. This process of recovery can be a little discouraging because I've had some days back in bed, which I thought I had left behind, but it makes me glad that I don't have any obligations and I have a summer to spend in bed. 

My days are now spent reading, seeing friends, talking to friends, writing to friends, spending time with my parents and my sister, making my room messy, cleaning my messy room, bothering Kitty, trying to eat as much as possible and trying not to forget how much better life has become. Although the first couple weeks out of surgery were horrendous, they were also magical because no matter how bad I felt (minus the time spent back in the hospital), I still felt better than I had before surgery. I was overjoyed to sit outside, to eat tomato sauce, to wake up in the morning and go somewhere without waiting hours for pain to subside and to see a friend without wishing I was just alone. It's amazing how quickly we adapt, both to challenging and improved circumstances. I slid into a quality of life that wasn't acceptable by any means and have since come to take for granted all the luxuries I had wished for not so long ago. I used to dream about cranberry juice. Now it's not such a big deal, although don't get me wrong - a glass of cranberry juice is undoubtedly special. Pretty soon I'll just be a normal person, both without the unusual pleasure taken from random foods and the freshly painful experiences that came to define me. 

One of my main activities