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

The Saga: Part 12 - This silly business is over with

Update: For the first time since surgery, I can honestly say that I feel okay. Before, I was feeling "better" but that just meant less bad. I have been eating like no other and the hard work has paid off. A couple days ago I went to CVS and raided the candy aisle. I couldn't eat artificial flavoring when I had UC so I couldn't wait to get my hands on some sour straws. Today I broke 100 pounds  and I will have to be vigilant not to lose it again. I've started eating a cup of ice cream every day. I think it has helped. Yesterday my dad graciously drove my sister and me to Yosemite for the day. It was my first big excursion and I survived. Yosemite is my favorite place in the world so being able to go there for the first time since I got sick was really special. 

Back to the Saga

Earlier in the spring semester, I had asked my parents to come out to see me. I had grown very close to them when I was on medical leave because I felt like they had saved me in a way. They had truly been model parents and I couldn't have done without their support. First, my sister came to stay in my medical single - perfectly equipped for a sibling sleepover - and my parents followed a week later. I wanted someone to be with me for a couple days, live my life and tell me how sick I was. At that point, I had no idea. I knew that I could function under challenging circumstances and I worried that maybe I was sicker than I estimated. Well, I was right. I couldn't even deal with having my sister stay with me. It became clear that I had been constantly been living on the edge of a meltdown and having to account for a person visiting was not something I could do. When I asked her for her opinion, she just said, “Well, most people wouldn’t be in school the way you are. I think you should have surgery.”

It was also clear how incredibly stressful my state was on my family. My mom ended up crying in a coffee shop near campus as we rehashed my choices because things were so wrong. Over Easter break, two weeks before surgery was scheduled, we all went on a weekend trip. Leaving my Georgetown world made my condition even more blatantly obvious. I didn't feel well enough to do anything other than sit around and I just wasn't myself. I had become someone else, someone more calm, better at listening and more relaxed, but not me; someone without energy or vivacity.

When I wrote out a pros and cons list with my sister, the pro side was three times as long. I even had to add "scar" to the con side to make it longer, which hardly even counts because I am looking forward to telling tall tales about a knife stabbing. My dad had always been hesitant to encourage me to choose surgery since, with the same disease, he had avoided surgery and is now in full remission. When I asked him what he thought and he told me he thought surgery was the next step, I started to commit. But I still wasn't finished! 12 days before surgery was scheduled, I saw Dr. Charabaty at Georgetown for one last doctor’s visit. She confirmed that surgery was the logical conclusion and told me I had been through enough. On the way home from the hospital, I ran into a close friend and he asked me how I was. Usually I can keep it together, but I just started crying and I had no why idea. He got to the root of it and helped me realized that I was overwhelmed by how much my life was about to change. But, he reminded me, it would be a really good change! Then I spoke with Dr. Hosseini from Berkeley. I felt particularly attached to him because I felt like he had saved me (in addition to my parents) in the fall. I trusted him and I remembered when he had told me he had never had an outpatient (someone not hospitalized) have surgery. Would I be the first?

(Sidenote: My mom told me that during one of my ER visits over my weeks of complications, on such high doses of morphine that I myself don't remember, I kept saying, "I just want Dr. Hosseini! I just want Dr. Hosseini!" Sweet, huh?)

I reviewed the events of the spring and Dr. Hosseini told me that surgery was for the best. He told me he thought I would be happier. I had always appreciated how he considered my general state, not only my symptoms. I got off the phone and I felt a huge weight lifted. It was over. Although I had professed to various friends at various times how "done" I was with UC over the course of the spring semester, I always rallied back and kept fighting. This time I really was donezo donezo. Suddenly my symptoms didn't seem that bad. 12 more days! That was like nothing. I had already finished my four final papers and I had a week to study for just two finals. It was the easiest finals period ever and I was done before everyone else started. I felt happy and I couldn't wait to go under the scalpel. The rest is history!

I went back to see Dr. Hosseini a few weeks after the first surgery because he told me to come by. The receptionists and nurses were so happy to see me as they admired how much healthier I looked. When I spoke with Dr. Hosseini, I just grinned and told him that my life had changed around. He smiled back and we reveled in the wonders of medicine. You want to take out your colon, replace it with the end of the upper intestine and live with a bag for two months? You must be crazy! Nope. 

During our Easter trip: the last time I wore a bathing suit with no scar!

6 weeks after the first surgery, I can slowly walk short distances and I got to the top of Miller Falls in Tuolomne Meadows, Yosemite.  

My sister and I in Yosemite. My cheeks have gotten a little chubby from prednisone, surprise.

The Saga: Part 11 - Making the best of it

Update: I have been eating more and loving it. Now I actually like food. I am eating several small meals per day. For example, yesterday I had: 1/2 hamburger, a bowl of pasta with tomato sauce, a peanut and butter jelly sandwich, a big chocolate chocolate chip cookie, a bowl of raspberry sorbet, some cheez-its (of course) and a chicken quesadilla. That's a ton of food compared to...well, nothing! I am still having painful cramps every day in my upper intestine but from week to week they become less painful. Recovery is a two-steps forward one-step back process. About every other day I have a bad day that is not quite as bad as the bad day that proceeded it. Although I had surgery five weeks ago, when my upper intestine was obstructed and I started the process of eating over again in the hospital, my upper intestine started from zero again. So my upper intestine is three weeks into recovery and my J-pouch is five weeks into recovery. That probably explains why I'm still not able to walk much. Luckily, my J-pouch is what matters for the second surgery. With all that eating I still weigh 98 pounds. If anyone wants to give me a couple of their pounds, I'd appreciate it. 

To get back to this spring, my symptoms reached a type of plateau in February and March. I was markedly better than the fall, but still not in remission. And "better" still meant way sicker than anyone in school should be. I went to the bathroom urgently 10-20 times a day, suffered internal bleeding every day, had terrible pain spasms up to three times per hour, wanted to throw up every time I ate and quite a bit of the rest of the time, and had very little energy. For this reason, my doctor at Georgetown agreed, with a significant amount of pressure on my part, to increase my dosage of the immunosuppressant Azathioprine to the absolute limit. I promised I would gain weight because my dosage was slightly above the weight requirement. At the same time, we decided to try combining Azathioprine with Remicade, an infusion of immunosuppressants that is essentially low chemotherapy, also used to treat Crohn's disease and Rheumatoid Arthritis. I have great health insurance so I don't have to worry about cost beyond a yearly deductible. Still, to give you an idea of how costly being sick can be, just one (1!) infusion costs between $8,000 and $9,000. I was getting them every four weeks. Even if I got one every ten weeks, that's about five per year, or $40,000 to $45,000. According to Consumer Affairs, unpaid hospital bills are the No. 1 reason for bankruptcy as of 2010. Just something to think about. 

As I have mentioned in a previous post a ways back, some doctors will not even consider the combination of Remicade and Azathioprine because it is associated with fatal lymphoma and increases risk of infection in the patient. At the same time, the combination is supposed to be more effective than either Azathioprine or Remicade alone. Both my GI doctors in California and Georgetown advised that this was the last available option before surgery. If I did not go into remission, I would have to have surgery. Remicade is usually frontloaded, which means that infusions are given at 0, 2,4,8,16 and 24 weeks (so more frequently in the beginning, then every 8-12 weeks). Dr. Charabaty, my Georgetown GI doctor whom I highly recommend, decided not to frontload me because I had already tried Remicade the August beforehand and instead to give me infusions every 6 weeks. I reminded her that I hadn't responded as expected to Remicade the August beforehand, so we settled for infusions every 4 weeks. 

For some perspective, having a dose of Remicade every 4 weeks is very very frequent and carries even more side effects. I didn't start infusions until early March because the whole process of making sure drugs haven't worked and deciding the next step in the scope of how often patients can see doctors takes a while. I had to go to the cancer center at Georgetown and I tried not to look at anyone because it made me sad. They did, however, bring around carts of free food and drinks. I didn't go anywhere for Spring Break because I couldn't exactly travel. Instead, I stayed in my friend Ghislaine's apartment on campus and ate lots and lots of cupcakes (and by lots I mean... as many as 10 in 24 hours).

It definitely was no way to live, but I focused on what I had control over: studying. I could study in my room when I didn't feel well enough to do much. I was in control of whether or not I did readings for classes so I always did them. I could decide how much to study and how. My mind could go beyond the confines of my body so I immersed myself in school. I've never studied so much and I probably never will because my level of dedication was totally unwarranted and only possible for someone who couldn't do much else! 

Meanwhile, in February, I had called UCSF and made a date for surgery. I first picked May 23th and later changed to May 10th so that I would have the most time possible in preparation for the fall semester. I had to take finals early, but that was a small price to pay for an entire semester at my favorite place ever. Although I obviously hadn't come to any sort of decision about surgery, I needed to have some sort of end in sight for my peace of mind. I could always cancel the surgery. The marathon of UC finally had a finish line! 

In March, on a whim, I decided to audition for a spot as a student speaker at the inaugural TEDx conference at Georgetown that I saw on the TEDxGeorgetown website. The topic was the Internet, which played a big role in the process of coming to terms with UC when I was on medical leave in the fall of 2010. It helped me feel less alone and I learned how other people had to deal with the same challenges as I did. During my audition I had this thrilling feeling when I realized that my story could give people perspective and I enjoyed sharing it. When I got a spot, I tried not to think about how much I hated public speaking and who on campus might find out some things about me I wouldn't normally tell them. Afterwards, I opened up a little more beyond the four friends from before about what I was going through. I understood that the more I shared, the more people could support me. All in all, the experience was great and inspired me to start this blog. After all the Internet had done for me - and despite how scary and tragic the message boards can be with stories of people sick for decades - I decided to put my own story out there. And it has truly been great. 

Being social helped me forget what I was going through

My friends were a great support system. 

Seeing Obama speak was a highlight of the semester!

TEDxGeorgetown Video: http://www.youtube.com/watch?v=HZb_ufGfmtw

The Saga: Part 10 - Back to Civilization

Update: Tonight I get to try French fries! My doctor approved. I can't wait!

The transition in January from being taken care of at home by my parents to returning to college life was difficult at first. Besides my mom calling several times a day to see how I was (of course, I would always say the same thing: not well), I was on my own in managing my disease. I had four friends who knew the details of UC because, understandably, the symptoms made me feel embarrassed. Obviously, I've gotten over that! And I assume that if you are reading this, you aren't going to think of me differently afterwards. I had my friend Ghislaine who herself had the disease and then surgery, two mutual friends who already knew the details from being friends with Ghislaine and a friend with Crohn's. Other than that, I would just tell people I "didn't feel well." While that may sound lonely, the fact that people didn't know how sick I was meant that being with other people was an opportunity to be distracted by other subjects and helped me feel more normal. We couldn’t talk about details because people didn’t know them.

I had a medical single with my own bathroom, which was also lonely but absolutely necessary. Honestly, I was doing any potential roommate a favor by sparing them. I took a more assertive stance towards being sick in school, working the Academic Resource Center to get medical accommodation letters for my professors. I could try to be normal socially, but trying to pretend to be normal academically was plain silly. With a series of letters from my doctor in Berkeley, the letters of accommodation notified my professors that I might need to leave class or arrive late because I didn't feel well, that I felt ill unpredictably, and that I had permission to use the Academic Resource Center for midterms or finals with stop-time if I wanted to. That meant that I could leave a testing room and not lose any time allotted if I needed to spend some time in the bathroom palace. 

While I never actually used special testing or missed a class because I always tried to be as normal as possible, knowing that my professors knew what was going on made me much more relaxed. Even though every day getting to class was a struggle, I always made it. I will admit that there were a couple classes when I arrived in tears. I wanted to be normal like everyone else and not have to think about what I had to think about. I didn't want to be that girl who left class every class and made a disruption. I often counted down in 20 or 30-minute intervals - I would tell myself, in 20 minutes, I can leave and throw up. 20 minutes later, I would tell myself that in just 20 more minutes, I can leave and throw up. That way I could make it through a class. When class was over, I bolted to the elevators to get to the particular floor of whatever building I was in where I knew there would be no line to the bathroom. I basically planned my days around routes between bathrooms in buildings. I rarely went off campus and took the metro once the entire semester. Public transportation is a UC nightmare - just think, how accessible is the bathroom? It sounds bad, and it was, but it didn’t seem that bad at the time. I did what I could not to think about more than the immediate. Sometimes I became frustrated with my limitations because college is so brief and so special, but I would remember that I was just lucky to be at Georgetown at all. 

I brought my flags back to decorate my room in Georgetown!

One of the few times I ventured off campus, to the Kennedy Center, with my friend George, who knew what was going on.

The Saga: Part 9 - Return to Semi-Normal

Update: Almost five weeks after the first surgery and three weeks before the second surgery, I am still getting better but also feeling better. I was able to endure another blockage on Tuesday, in a museum, where I didn't have my medications with me. Saturday I had another one. It wasn't the most enjoyable experience but making it through without pain medications convinced me that they don't really help me as much as they make me nauseous. On Thursday I went into San Francisco all on my own, using public transportation. It was the biggest outing I've had since surgery and although I was completely exhausted and my stoma hurt quite a bit by the time I got home, it felt really great to do something independent. 

It's time I filled in the story between the success of Azathioprine and surgery. As Azathioprine - to review, an immunosuppressant taken as a pill that takes two to three months to work - clearly had begun to work, my doctor increased my dosage to see if I could get even better. I also had to continue to do one or two blood tests a week to make sure that my liver was tolerating the medication. That actually gave me something to do - I wasn't doing much, but I could ride my bike a flat mile to the clinic and wait in an office for a short time, plus catch up on some celebrity gossip magazines.  

I continued to feel better so I went back to my summer internship with my senator and got a part time job as a cashier at cookware store. Being a cashier was pretty difficult because I had to stand up for long periods of time and required a lot of energy, but it was a great way to get out of the house and forced me to be as functional as I could. While I had hoped and planned to go back to school in the spring even when I was at my worst, ir wasn’t until December that it was clear that I could go. My pain had become predictable in a way that I could plan how to function around it. I was in extreme pain the mornings for a couple hours and felt like I had the flu for the rest of the day. I knew I just couldn't take early classes, couldn't wake up ten minutes before class and would have to limit my commitments in a way I could cancel at the last minute or organize my time independently. Doing research for a professor in the library on my own, taking the least desired copy editor shift to lessen the number of shifts I had per week, setting up my own tutoring schedule as a French tutor for the Academic Resource Center Being, going to church, and being a sister in the professional foreign service sorority DPE allowed me to do things my way. I went when I could, but when I couldn't I didn’t sweat it. 

As I packed up to go back to school in January, I couldn't really believe that I was actually going to leave the care of my parents and the little sick world where I had managed to convince myself I had returned to some kind of normal. I weighed just over 100 pounds. I was nervous for the plane flight because the change in pressure tended to increase my pain and internal bleeding for a while afterwards. It ended up taking me a month to recover from my flight out to DC. Still, getting back to Georgetown was just great. Seeing dear friends and having so many things to do brightened my spirit. I was very hopeful for how much better I would get in the coming months. My doctor in Berkeley had predicted that I would just get better and better. It seemed as though I had responded to a drug well enough to go into remission (which is when someone with a chronic illness is symptomless - the disease is not cured) and avoid surgery. 

I could do things like bake 18th birthday cakes for my Kitty. 

Enjoying some fresh ocean air in early January.

My parents and I went hunting for wild chanterelle mushrooms. My mom is really good at identifying them. I just follow her around. Then she cooks them and I eat them!

Surgery Number 2 has been scheduled!

My second surgery has been set for July 5th! Although I had hoped the second surgery would happen as early as possible, I wasn't expecting it to be exactly eight weeks after the first. My nurse had given me the impression that I wouldn't know until after x-ray results in late June, but my surgeon's secretary went ahead and scheduled me. I suspect that July 5th is the date provided my x-ray results are satisfactory, so there is always a chance it won't go as planned. Details aside, I am really happy with the date because it will give me a full eight weeks to recover before I return for my fall semester at Georgetown. The general recovery after the second surgery to feel in great shape is three months, so I will only have about one month in school when I will still feel a little under the weather. Of course, it takes about a year or two to get the level of health I will be for the rest of my life (as my J-pouch learns how to be like a colon), but those first three months will be the hardest.

Every day I have been doing better, but I definitely have up and down days. I am walking faster and longer distances and I can eat more at once without being in pain.  My weight is still around 99 pounds so I have some work to do yet. I have been eating crepes, omelets, macaroni and cheese, french toast, lots of cheese and crackers, cookies....yummy things!  My energy level is much higher and I'm just much happier in general. Still, last night I almost went back to the hospital. I even had a bag packed because from previous experiences, once I start throwing up (and remember that would be in at least 7/10 pain at that point) it's difficult to think clearly enough to find everything I might need in case I am admitted to the hospital from the ER. To keep myself entertained for an unknown amount of time in a room with the company of some machines and a bed, I need my iPod, my iPod charger, my phone, my phone charger, a book, my computer, my computer charger, some New Yorkers, a toothbrush, a hairbrush, a change of clothes, etc...the one thing I don't need to worry about is medications because you are actually not allowed to bring medications when you are admitted to the hospital. They confiscate them! Instead, you tell them what you take and they have their pharmacy fill a prescription for you. They have a "cassette," essentially a bag in which they keep all your medications. They bring your cassette at the time of day you take your medications, watch you take them and then take them back. They wouldn't even let me keep my asthma inhalers with me in my room. I guess some people abuse medications. And I will admit that I cheated...I take a nasal spray right before I go to sleep so that I don't get congested and I didn't want to have to deal with the hassle of paging the nurse right before I went to sleep (I have to keep my freedom and independence!) so I snuck my nasal spray in and didn't declare it. Ha.

To get back to yesterday's ordeal, I had a blockage that resolved itself but I really really really felt horrible. It was a similar complication to what landed me in the hospital for the second time, for ten days, when my upper intestine swelled shut. The only thing to do is drink lots and lots of water, not eat anything and try to keep pain under control. In addition to tremendous nausea, the main symptom is terrible cramping that feels like someone is stabbing me over and over and it just takes my breath away. Then it subsides and comes back. Each time I get a cramp I have a gigantic urge to throw up. So yesterday I just kept on a regime of liquid vicodin, valium and zofran - the anti-nausea medication often used for chemotherapy that they give me in the hospital. As long as I can keep my pain under control, which means not reaching the point where I throw up just because of pain, and I don't throw up because that becomes the only direction food can go, I am happier at home than in the hospital. Plus I pretty much have my own pharmacy, including a pain medication 4X stronger than morphine (dilaudid). Still, I would never take it because it makes me breathe oddly and I would want to be under observation (it was filled by accident; it's not exactly like I want all these drugs around my house, so if anyone is thinking about stealing them, I am throwing them away tomorrow). I have a tendency to stop breathing correctly under high doses of morphine or dilaudid and they have to put an oxygen mask on me. In fact, the first thing I remember from waking up from surgery was someone yelling at me to breathe.

Once, when I was in the ER on super high doses of morphine, my dad was alone with me in my little-ER-room-without-a-door-but-with-a-curtain and my oxygen level started plummeting, which you can tell because they have an oxygen measure on your finger at all times hooked up to the machines that start beeping if the level drops. My dad ran to the nurses and they came in and started yelling at me. I (I don't remember any of this) opened my eyes really wide and then passed out again. So they put a mask on me.  Conclusion: no dilaudid at home for me! Luckily, I kept it together over about 12 hours of this silly business and the blockage passed.

I can't wait to get back to Georgetown and really enjoy everything it has to offer. Freshman year I was still getting the hang of things, and sophomore and junior years were very difficult for me on account of ulcerative colitis, even though I gave the impression that I was fine. I almost feel like I am going to college for the first time next year, except that I already know exactly how great it will be. I am finally the person who I should be but just couldn't be when every day was a marathon. Thinking that way makes me a feel little defeated because it's as if the disease beat me and I am not used to losing, but sometimes things are out of our control. Although when I was sick I did my best to have a positive attitude and take pleasure in what I could, I just could never feel genuinely happy. I didn't want to be alone because my disease made me feel so isolated when few people could understand what life was like for me, but I didn't want to be with other people because I was in pain and uncomfortable.

At the same time, if surgery had not been an option, I know that I would have found a way to approach life in the best way possible because there are plenty of really inspiring people in the world who do just that. I am incredibly lucky to have had a disease that could actually be cured. I have the luxury of looking back and knowing that my quality of life was not up to standard and be able to appreciate every day like a gift!

Cheez-Its...I really love them, and they were too processed for me to eat before. Now, every Cheez-It I eat is like a bite of the word delicious.

I won't be getting appendicitis anytime soon

I am still not back in the hospital! Things are looking good. The first night home was scary because I didn't have the reassurance of nurses coming in to check on me and I knew that there was no morphine if I went downhill fast. I made my dad sleep on my floor and of course, I was fine. I am still having really painful occasional cramps so I haven't been able to reduce my painkillers the way I would have liked to, but that's the way it goes. Today was rough because the cramps got worse and nothing was passing through my bag, a bad sign. The situation reminded me of how my obstruction started out so I got nervous. I switched back to liquid painkillers because they are easier to absorb and took a valium because the doctors told me it would help cramping. I also went on a liquid diet for 24 hours. I have to make many little decisions about which painkillers to take (and I have a lot to choose from!), what form of painkillers to take, when to take them, what to eat, when to eat, how much to eat and when to go the hospital. It can seem like a lot of responsibility and I almost feel like my own doctor. Luckily, I seem to have done a good job and after five hours I started feeling better, although I am still in a lot of pain. It was reassuring to have a problem that didn't land me back in the ER or the hospital. 

Yesterday I went to see the nurse for a post-surgery check up. I found out that my blood type is A positive and that they took my appendix out in the first surgery! My friend Ghislaine told me they took her appendix out during her surgery so I should ask if they had taken mine out as well. My nurse casually said, "Well of course, they're all connected." Thanks for telling me! I also got approval for foods I wasn't sure I could eat, including creamy peanut butter, brownies, chocolate chip cookies and croissants. I do think, however, that chocolate chip cookies are not so good because I had some last night and that might be what led to my unfortunate day today. It's all about trying what works. The earliest possible date for my second surgery is July 5th. I will have an X-ray during the last week of June and depending on the results my second surgery will be scheduled, with the earliest being a week later. So I won't know until shortly beforehand...oh the suspense. 

Hospital room #2: The room of complications

My wonderful family, coming to keep me company. I still could not eat at this point....so thanks.

Picnic in the hospital!

The view from my room