I broke out of the hospital

Not really, but my doctors told me I could leave today or tomorrow so I carpe diemed and escaped. I am armed with valium, 500 doses of liquid vicodin, oxycodone, hydrocodone, percocet and various antispasmotics. I hadn't realized how out of it I was until I got out of the hospital and walking feels a little like swimming through the air. I'm probably a lot more functional than most people would be because I've gotten used to pain medications. My parents asked me what low-fiber meal I wanted and I requested crepes (of course, it's me!). I will admit that the menu was really confusing.

Being home is amazing! Even though I took plenty of walks around the halls in the hospital, I was in bed most of the time. I have since gotten to have some quality time with Kitty the cat and she already seems much happier. I tried on some of my normal clothes and...well, I don't fit anything anymore.

Now I am on a low-fiber diet, which includes: limit intake of milk and milk products to 2 cups per day, fruit juices without pulp, canned fruit, ripe bananas, applesauce, special no vegetables or fruits (other than bananas) for me because of my blockage, white breads and rolls, plain bagels, biscuits, white rice, pasta, tortillas, potatoes without skin, cream of wheat, instant oatmeal, cold cereals such as corn flakes, rice krispies, and cheerios, ground or well-cooked meats including tender beef, lamb, ham, pork, poultry, organ meets and fish, eggs and cheese, jellies without seeds, cookies without nuts, plain cake, plain donuts and sherbet. I haven't had a donut in two years!!

When I came home I just started crying because I was so happy not to be in such unimaginable pain anymore. I didn't even know pain like that existed. I still wouldn't take back those three weeks in exchange for a lifetime with ulcerative colitis. Basically, I made it. I'll definitely have some more setbacks but hopefully no more 20 doses of morphine at once!

If you haven't already seen this, here is a funny version of the pain scale: http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html

I get out of prison tomorrow

Finally, some excellent news. I had a great day yesterday and this morning my doctors said I could leave tomorrow if nothing bad happens today. Still, Friday night after my yogurt was one of the worst nights ever. My stomach pain went to my spine again and it took 14 doses of morphine over five hours of complete torture to make it bearable. It was pretty worrisome because there was no way I could leave the hospital if I needed such high doses of pain killers. Yesterday morning I still had some lingering pain so I got another morphine dose. I had learned the hard way that if I let the pain get away and ended up chasing it down, it took hours longer to control. Even though it was a terrible time, my sister was at my side holding my hand all through the night.

I noticed that some pain killers in pill form came out whole into my ileostomy bag - it's weird to imagine them just coming out whole out of a hole (ha) near my belly button. I clearly wasn't absorbing much, but my doctors hope that with a solid food diet I will absorb more. They also switched me to a liquid pain killer called "elixir," which tastes like the worst cough medicine ever but is definitely absorbable! Today I am moving from liquid corticosteroids to solid pills of prednisone. If I absorb them and nothing bad happens, I will be all set to leave tomorrow.

Yesterday I got to have my first solid foods while I watched the Champions League final (soccer, for those of you who don't know), a pretty perfect way to start a Saturday. I also rooted for the winning team, which helps. I got to have some turkey, a milkshake, plain pasta and carrots. I ate very very slowly because it was the first time in eight days when I ate anything solid. I didn't die, however, obviously. Since it was a weekend day my whole family came to visit and we had a great day hanging out in the hospital. I still only weigh 99 pounds but I am working hard on those milkshakes to bulk up. I asked a nurse what the deal on pizza is and she told me that pizza is fine for me to eat, even on my low-residue diet. That made me pretty excited.

I finally feel ready to leave. Before, I knew that my pain wasn't manageable and I didn't want to have to go back to the ER if a pain episode occurred. Being in the hospital was the best place for me to be. Now I think I will be fine at home. Even the doctors do too, knowing my troublesome tummy inside and out!

Carrots never looked so good!

My upper intestine is like a snail

It looks like my release won't be for a while. Yesterday I tried pudding but I started having terrible pain spasms in my stomach. It feels like my insides are being pulled and twisted and ripped all at the same time. Then I threw up the pudding! For my doctors, that was a setback. I resisted morphine until I really didn't have a choice. It definitely made me feel better but I can't be on morphine at home so I have to be able to control my pain using oral pain medications. My nurse told me that the upper intestine can just take a really long time to start working after it has been blocked, and that I will be fine eventually. 

This morning I felt really well and I tried yogurt instead. I made a little trip to the cool meditation center but I felt the pain spasms returning so I went back to my room. I didn't wait as long to ask for morphine but I also had to get some valium AND percocet. I hate being on so many drugs but otherwise I am just so absolutely miserable that I don't have another option. 

For the first time today I started feeling like what is happening to me really isn't fair. I'm not angry or anything. I just wish that this wasn't me. Still, when I think back on how deeply unhappy I was before surgery and how I just could not go on, I know that the decision for surgery was the only one. It can be easy to lose sight of the big picture when my body hurts so much. I am lucky to be in a top-notch hospital where I feel really safe. I just need to be patient. It also really helps to have so many people who support me and are doing whatever they can to make me feel better. What's a couple more days in the hospital for a lifetime of health?

On to bigger and better things

Today I was allowed to eat pudding, yogurt and a protein shake! In total I managed to eat one jello, 1/2 a pudding and an apple juice. Unfortunately I feel like I am going to explode because after not eating for five days my stomach is so small. Luckily I am not in much pain from eating; mostly just discomfort. I have to be careful not to eat too much too quickly. One of the members of the Donner Party died after he had been rescued because he ate too much after starving for so long. That won't happen to me!

They removed me from my IV pole so now I can move around much more freely. I have already lost some water weight from not being not IV fluids- I'm down to 102 pounds - but I have thought up 100000 meals I want to eat when I get out of the hospital, so I shouldn't have too much trouble gaining some weight back. Just think, I haven't had ketchup for two years.

The verdict on what got me into this mess is that my J-pouch was distended (we knew that, thanks anyway), which caused my upper intestine to "fall asleep" and swell up so that nothing could get through. That created severe pain and everything that went down had to come back up, which caused the ridiculous vomiting that made me want to die. Thankfully my J-pouch has since learned how to hold fluid and not be distended, so hopefully with the latest doses of steroids inflammation will not return. The J-pouch tissue starts to behave more like tissue you would find in the original lower intestine, which is how it "learns." That's really amazing, but of course it will never be like my lower intestine, which is long gone to pathology heaven at UCSF (good riddance!).

A hospital volunteer came around and made my day. She gave me a sudoku book, a Time magazine issue about FBI Director Bob Mueller (whom I happen to be reading about in Obama's Wars), chapstick, floss, hand sanitizer and a comb! If all goes well I will be released from the hospital tomorrow or Saturday.

What would Mueller do if his J-pouch was distended? 

It looks like the worst is behind me! On Monday I felt so so so hungry and ate too many ice chips, which made me throw up. That was pretty unpleasant because I hadn't even eaten anything for three days. The nurses gave me heavy-duty anti-nausea medication that made me sleep for 15 hours. Yesterday I didn't feel much better - I still had severe pain spasms in between the nausea - but today I just feel better somehow. Although it is a good thing that I am supposed to start drinking clear liquids like tea and juice, I am pretty nervous and my fingers are crossed for how my troublesome tummy handles it.

I found this interview on CNN with my GI at Georgetown. This explains why it's so hard to get an appointment with her.

Puzzle Partially Solved

I have found out some more information about my situation. In the ER on Friday, I had an MRI that showed no total obstruction nor abscess, so there is no need to be overly concerned. It did show that my J-pouch was distended again, but that took care of itself. It looks like I have a partial obstruction of the small bowel, which is not as serious as a total obstruction. A bowel obstruction happens when either your small or large intestine is partly or completely blocked. The blockage prevents food, fluids, and gas from moving through the intestines in the normal way. The blockage may cause severe pain that comes and goes as well as intense nausea and vomiting. When I was admitted to the hospital on Friday, my system was totally quiet -  a bad sign. Now it is making little noises but nothing is going through still. I have a couple more days to get it going again (I am still not allowed to eat or drink) before they put me on IV nutrition. I really really do not want IV nutrition so I am just crossing my fingers. Small bowel obstructions after surgery are not uncommon. People usually end up in the hospital until the obstruction subsides. I asked one of the doctors if this meant my second surgery would be delayed and she said that it most likely would not because it wasn't a surgical problem. That makes me feel better. The doctors put a rubber tube into my stoma yesterday to help any blockage resolve itself. It is still just sitting there but nothing has come out. 

In the mean time I am just chilling in the hospital. I have my computer so I can watch movies, TV and keep in touch with people. I have a book, some magazines and my ipod. My mom, dad and sister take turns spending the night in the hospital with me. I take walks until I have a pain spasm because walks are supposed to be very helpful. Luckily the floor plan is circular so I am never far from my room. When I was admitted on Friday, I had lost 15 pounds since surgery. Although I haven't eaten anything since then, I have gained five pounds back in IV fluids. My sister and my mom know the code to the staff-only kitchen closet so they take graham crackers when they get really hungry. 

I am definitely better than I was on Thursday and Friday, when at every moment I questioned how I was going to survive to the next moment. Hopefully I have that experience behind me and I will just get over this silly obstruction as soon as possible, preferably without IV nutrition. 

Back to the hospital I go

I am back in the hospital after some of the worst days of my life. I have had terrible pain around my belly button, probably resulting from a blockage of my upper intestine. I went the ER at five in the morning after I started throwing up just from pain. The pain also went to my spine. They gave me anti-nausea medication and morphine, discharging me in the afternoon. I voluntarily hadn't eaten anything in 26 hours. The ER gave me a really strong pain killer called Dilaudid, which seemed like the only thing that could keep me out of the hospital. I started feeling nauseous before I even took it and couple hours later I started throwing up and just couldn't stop. The only thing I had eaten in 30 hours was half a protein shake. I had to back to the ER. When I had left earlier in the day, the ER told me that if I needed to come back I could just be admitted straight away and skip the ER. However, when we got to Admissions it was closed and I had to go the ER. I couldn't walk because I was throwing up everywhere so someone found a wheelchair and they took me to the ER. I couldn't stop throwing up or shaking so it took a while for them to get an IV in with anti-nausea medication and morphine. After a couple hours they transported me back to the hospital and the floor where I recovered from surgery. I got to go in an ambulance! That was exciting, except for the reason why I had to go in the ambulance. It took a while for my new location to get me anti-nausea medication so I started throwing up again, but this time it was just dark green because I had thrown up absolutely everything else. The doctors had to give me a different kind of anti-nausea medication to finally make me stop. I kept waking up at night in pain and I can push my morphine pain button but it doesn't even help. Today, two days later, I still haven't eaten anything but I am allowed to chew on ice chips. The doctors think I might not have absorbed prednisone pills correctly and by consequence gotten a blockage and inflammation.  So now I am not eating and on liquid steroids again. Hopefully I will get better. I feel ok right now but suddenly I feel worse and only time makes me feel better. This post is disorganized but no one even knows for sure what is wrong with me and I get confused about what happened when. All I want is not to have my second surgery postponed so that I can go back to Georgetown in the fall. 

Complications

I couldn't bear to spend one day away from the hospital so I decided to go back yesterday. Just kidding! I had a complication that wasn't serious but was very uncomfortable. I started feeling nauseous, dizzy and really tired when I got home from the hospital and it got worse throughout the evening. I got through the night but the next day I felt even worse. I wasn't in a tremendous amount of pain in one spot; I just felt like I was going to explode and throw up. The advice nurse for the surgery clinic told me that it probably wasn't serious, but I should go to the ER (it was after hours). In general, patients should feel better after the hospital, not worse. Also, nausea can be a symptom of a blockage or obstruction, both of which can be very serious. The ER waiting room was the friendliest I've ever seen it. Everyone makes friends on the west coast with each other. At the same time, it can be hard to distinguish between extremely friendly people and slightly unbalanced people. 

I went to the ER at UCSF in San Francisco because that's where my surgery was done and it would be easier for them to coordinate with my surgeon. The doctor who helped me there was even part of my surgeon's team. She thought that my J-pouch was distended. For a quick recap, in the first surgery, surgeons took out my lower intestine and pulled down the end of my upper intestine to kind of replace it, something called a J-pouch (because it's shaped like a J). Then they inverted my upper intestine to near my belly button to divert my digestive tract and give the stitches in the new pouch time to heal. It is a tricky area to heal and if there are any leaks, the body cavity is essentially poisoned, something called anastomosis. In my case of distension, the J-pouch had collected about 300 ml of blood. Because the cells are from the upper intestine, they are not accustomed to holding liquid and only hold liquid when you are about to throw up. That's what gave me the sensation of nausea. And it wasn't going to go away because the J-pouch hasn't yet learned how to...well, complete the digestive tract. So the doctor fixed me. Then some blood tests were done to make sure I didn't have an abscess, which could be determined by a high white blood cell count indicating infection. (Gross alert) An abscess is a localized collection of pus that can destroy tissue and potentially create a leak to contaminate the abdominal cavity. Again, it's a similar idea to anastomosis but not as serious. The tests came up with nothing and the ER paged my surgeon, who said I could go home. 

The ER doctor reminded me that although a colectomy is a serious surgery that involves a long and difficult recovery, I will be much better in the long term. I got to talking to one of the ER nurses who had Crohn's - hello, it's the west coast so I make friends with everyone in five minutes - and her story reminded me how lucky I am to be able to be cured, despite the surgery process. Complications are common and lots of people end up back in the hospital (my friend Ghislaine did too) within the first week or two of surgery but that's nothing unusual. Today I feel so much better and I even took a walk all the way around the block. I am still having trouble standing up straight but that will come with time and effort. 

Pictures from Surgery 1

My new fashion line                           

My sister and I

The inflatable heated blanket pad they gave before surgery

You lose, Mr. Colon!

Don't remember this

I go into the Operating Room

After surgery. I don't remember this. 

My stoma. Below is an incision scar, to the right is my drain, and that green button is my pain button that I could press every six minutes.

Some dear visitors, Smitty and Patricia, who gave me a blue bear but I don't remember much of what else happened.

Getting up is really hard when your stomach muscles have been cut and you are on pain mediations galore.

At first I got lapped by old people, but then I turned into speedy gonzalez.

My friend, Eden, and I five days after surgery

Taking out my drain

...and it disappears inside. The dots are from shots to prevents blood clots. 

I get out!!

Home sweet home

Today i got home from the hospital! I was definitely ready to go but I am still very weak. Yesterday they let me start eating solid foods like pasta, carrots, and turkey. Eating is getting less painful but it still takes motivation. This morning they took out the drain that was on my left side. The doctor told me it would be a weird feeling but I wasn't quite prepared for the idea of him pulling out a plastic tube from my stomach that had been there for days. Then they took out my IVs and gave me some doses of steroids, pain killers and antacids. 

I had to walk on my own for a little bit and it was pretty hard. I still can't stand up straight and I feel so exhausted after walking a couple steps. They brought me a wheelchair to take me to my parents' car and we drove home. Each little bump in the road felt like someone was sticking a hangar into my belly button and moving it around. My stoma is in a really awkward place because it is right at my pant-line so I can either wear my pants super saggy style or really high like an old person. Either way, I will be the coolest kid on the block.

 Of course, today was the Bay to Breakers marathon in San Francisco, which is mostly just a parade of naked drunk people with a few runners. We had to avoid them in the streets but I made it home safe and sound to Kitty, who was waiting for me.  I got to take my first shower in way too long and finally be in my bed. The plan for the next couple days is to practice walking a couple times a day and help my stomach muscles recover. Tonight I get to eat tomato sauce for the first time in two years!

What it is like to be in the hospital

I get three shots of the anti-blood clotting medicine Heprin per day. It has gotten a lot more painful since I went off liquid morphine and dilandid. It hurts less when it is injected into fat but they can't find any fat on me to put it in. Since Tuesday I've lost eight pounds - still, remember that my colon weighs about five pounds alone. They take my vital signs - blood pressure, heart rate and temperature about five times a day, including in the middle of the night. A couple times a day they put some hydrocortisone in my IV, which is like a liquid form of the steroid prednisone. When I leave the hospital, they will give me pills to taper it off. The team of doctors and surgeons makes its rounds early every morning so I try to remember any questions I had from the night before. Every day I have a Patient Care Administrator, a nurse, and a surgeon on call. Sometimes they are different people and sometimes the same. My first PCA was just my sister's age and she was really nice. I could tell that she was proud of how much better I got every day, but now she is gone! The PCA and nurse come in fairly frequently to come check on me and I also have a call button. When one of my parents is with me I can make them do errands for me too. I mean, I have to take advantage of these kinds of opportunities when I can.


I found out that on Tuesday, right before I went into the operating room, my mom and my sister got to say bye to me one last time. I don't remember any of it because they gave me a pain medication that made me forget what happened before. True to character, however, I apparently told my mom to "bring me back a treat." Who knows what I meant exactly but it's nice to know that pastries and cookies are always on my mind.

Today I am feeling a little better physically but much better mentally. My spelling is getting better and I can organize my thoughts. I don't need the nurses to tell me what I need anymore because I am aware enough to ask for it. I am still in a lot of pain when I eat but I think it is getting better. Laughing, crying, burping and hiccuping are also really painful. A couple days ago I got the hiccups when I first started drinking water and the only thing that could stop them was a bunch of morphine and vicodin. Luckily I am doing better now. I also think I tried to reduce my pain medications (because I don't like taking them) too soon. The doctors told me I would be on oxycontin for weeks so there is no need to suffer when pain is a normal part of the recovery process. I have also learned how to balance drinking enough water when I eat and also eat slowly because I think that helps. I am sleeping less and getting a little more bored, which is a great sign. This morning one of the doctors from the surgical team came in to look at my stoma and admired the work of the head surgeon, Dr. Varma. The doctors took out my IVs with pain medication and water so now I have to drink everything on my own. I am not getting better quite as rapidly as I was a couple days ago but I am still a "model patient." Getting up is getting easier. I usually feel a little nauseous and dizzy right when I stand up out of bed but I am definitely getting stronger. I am still on track to leave tomorrow.

I was talking with my dad about how much better I am just a few days out of surgery than when I was on my semester off. It's a little scary because I realize how much more I put up with than I should have and how important it is to call it a day when that is what is truly best. Knowing what is best is easier said than done, but I was definitely more stubborn than I needed to be and held on too long at various times. Once I finally made my decision for surgery, I was so absolutely confident, however, that surgery was daunting mostly just because I just had to embrace change in a way that I never had before. I knew that it would be a good change, but all the same it was difficult to proactively make that change when I did not have to.

I am still getting beter

The post I did today was from yesterday, and boy am I better today! They took me off my pain button for liquid morphine so I am much more aware. Now I am on just two oxycontin pills every four hours. I am less sore and have a lot more energy but eating really painful. My stomach muscles are just starting to work again so even eating jello is difficult. Today I walked all the way to the end of the hall and back and I didn't feel like sleeping in the middle of it! I am really doing much better and I honestly don't remember much of Tuesday, Wednesday or Thursday. Various friends told me that I called them but I don't remember. I got confused about what day of the week it was and each day felt like a year. I thought that maybe they were moving me at night because I didn't recognize my room in the dark. Today I was able to eat cream of wheat, yogurt and pudding! I would have preferred chocolate, of course, but I won't say no to vanilla. Some friends came to visit and I didn't fall asleep the whole time they were here. Tomorrow I might move to more complicated foods, like bread, and then the earliest I could be discharged is Sunday. A nurse came and showed me how to change my bag and I wanted to throw up. All I can say is that luckily it's only temporary. I had been told that the first two days after surgery would be the worst and after two weeks I would really start to feel better. So far, I am on track!

It's truly miraculous how much better I already feel. I always dragged myself places before because I didn't want to miss out. Now I actually want to DO things, like eat in a restaurant, go see a movie, socialize, take a walk..you name it, I'd be up for it. I might be getting a bit ahead of myself at this point but I think that I have a pretty normal lifestyle in my near future. I feel normal again!

From Thursday, May 12th

Tonight will be my third night in the hospital. This isn’t that organized because writing a couple sentences makes me tired enough for an hour-long nap. I am no kidding! I am slowly getting better although there have been ups and downs. When I first woke up I just wanted to go back to sleep but the nurses kept waking up because they told me I wasn’t breathing correctly. Then they took me in a serious of elevators to the room where I am now. All I remember was how I was screaming as they pulled the hospital bed over the bumps in front of the elevators. I slept for a while and then I woke up to my friend’s parents, my sister, and my mom hanging out in my room. Although I was really tired I had a great time visiting with them. I started to feel better right out of surgery because I wasn’t toxic anymore.

That night was difficult because I had a reaction to the painkiller dilodin, which is seven times more potent than morphine. It made my tongue spasm against the top of mouth so often that I couldn’t sleep. Then I had a problem with the catheter - something you probably wondering about and didn’t want to know about at the same time. It wasn’t draining so the pressure kept building up but my nurse thought that it ws just the pain from one of the incisions, not the pain from the pressure of the urine, that was hurting me. The next day, day 2, I was no better so my nurse did an ultrasound on me and it turned out that I didn’t have any stored up urine. They decided I had bladder spasms, which is when the bladder reacts to a catheter and sends the wrong (and very painful) signals. 

My expectations about surgery were not exactly as surgery turned out. It wasn’t nearly as painful as I thought it would be, especially compared to a day in the life of UC. The first day when I woke up my whole abdomen was very sore and moving at all was really painful, but I am already doing much better. What I was not prepared for was how tired I would be. Walking 100 feet makes me sleep two hours. If I try to write a text message, halfway through I get all the letters mixed up and it stops making any sense. This post took me about five hours to write, off and on. 

On my life side I have a tube that drains into a bottle. The fluid is red-colored and watery and is draining from the surgery site. I have a few scars here and there and then my stoma on my right side. Things have started to empty into it, which means that my intestines are working and the surgery was a success! Now I just have to learn how to change the bag...I feel sorry for the nurse who has to do this kind of thing every day!

i am alive

i an sore and on morphine every 6 mins but i dont feel sick anymore. i cant move anf all day yesterdat my tongue was spasming, this is really tring. i cant eat or drink for days. but i feel so much better already and i made the right choice. yayyyyy

Emily post-surgery

HI everyone!

This is Ghislaine (her friend that also had the surgery), and I am just letting everyone know that the surgery went well  ("great success")! She is doped up on morphine right now ("very nice") and seems quite happy--despite being a little out of it.

xoxo gossip girl

Pre-Surgery Fun

This morning I went to UCSF to meet with some of the people who will be taking care of me. They took my blood to check my liver, kidney and iron levels to create a baseline before surgery. I had to stop taking my iron pills last week in preparation for surgery so I should be pretty anemic. We went over what medications I am on, what surgery will be like and what recovery will be like. My nurse predicted that I would be in the hospital from four to six days. I asked questions like what kind of pain medication I will be on and what kind of tubes will be sticking out of me. My nurse marked my stomach for the ileostomy bag, where the upper intestine will be pulled out and rolled over like a cuff. The whole bag-deal/two-step process is to improve healing and prevent leakages from stitches that could create very serious infection. My stoma, which the ileostomy bag will cover, is further down than Ghislaine or most people have them (not saying that Ghislaine is fat because she definitely is not). Because I don't have much stomach fat, it doesn't have to sit on top of the fat and can be lower down on my abdomen. That way I could wear a bathing suit with the scar barely showing. I also agreed to participate in a study for UCSF about how surgery improves a patient's quality of life.

Today I can't eat anything except bad flavors of jello and popsicles. I feel pretty nauseous so I don't want to eat anything anyway. The good flavors, like pink and red, are forbidden because (I think) they could make the intestine look inflamed or bloody. Jello and popsicles really do not satisfy hunger anyway so it doesn't matter. This afternoon I am doing one of the most fun things on earth - someday, I hope you will have the joy of trying it. I get to drink two liters of laxatives so that there is absolutely nothing in me when I go into surgery. It isn't actually the most fun thing on earth, but for people who are really sick like me, it is nice not to eat because then I am in much less pain.

I have to report to UCSF at 6 am for surgery at 8 am. Since I'm my surgeon's first surgery of the day it probably won't be delayed. The surgery will last for five hours. My parents will be able to be with me until I go into the operating room. I am really terrified but the nurses at UCSF are extremely caring and professional so I'm in great hands. Plus, my surgeon, Dr. Varma, is the head of colorectal surgery at UCSF and she performs up to four surgeries per day. Per day! I am so excited to wake up in the morning and look forward to the day ahead of me without reservations. I am just trying not to think about the in-between. The tremendous support I have has helped me so much. Thanks, and I'll see you on the other side!

Where the ileostomy bag will go

Nurse Indorf practices to make sure it is in the right place. 

We go over it again and again

Home in the nick of time

I got went home two days before surgery. The last time I was home I was still sick and when I arrived yesterday all the smells and sounds of my house reminded me of the weeks and weeks I would rather forget. On the way to the hospital for my pre-surgery appointment, we drove by my internship from last summer and I remembered how hard it was for me to get there and how I should have just quit. I guess I'm glad I didn't though, because I won't be up to much this summer except bugging people, watching Netflix, doing crossword puzzles and playing my pity card for favors like free pizza (I didn't even ask for that, someone offered)!

My therapy pet, Kitty, and I. I am her favorite because I am the only one who pays enough attention to her. She is my favorite because she was by my bedside every day last fall. 

The Saga: Part 8 - Something you've never heard of

Of course, the immunosuppressants I was on did their damage. A week before I was scheduled to go to Oregon, I got a couple blisters on my eyelid that looked a little odd. I had been on the lookout for anything unusual because my doctor told me that I might catch something “strange” and told me that I had to live like I had HIV. Luckily, I didn’t often stray far from home so it wasn’t too hard to avoid people. As I was leaving for a week, I decided to go to the dermatologist, Dr. Dotz, before I left just to be safe. He was very alarmed and told me I either had shingles, herpes, eczema or impetigo. I didn’t even know it was possible to get herpes on your eyelid. Although I got a laboratory test done that would come back with results in a week, it was really important to treat shingles and herpes immediately because if they travel into the eye and into the cornea it is possible to go blind. I went to the ophthalmologist (they saw me RIGHT away so I knew it was serious) and they told me my cornea looked fine. My ophthalmologist told me to call right away if a sore appeared on the end of my nose because the nerve in the eye connects to the tip of the nose and that would be a sure sign of shingles. Dr. Dotz told me that he didn’t think I had shingles because it hadn’t dramatically spread, so it was my call if I wanted to take the huge dose of antibiotics used in the first 72 hours shingles symptoms appear to lessen their severity. After 72 hours, there is no point and shingles runs its course to the fullest. I decided not to take the shingles medication because antibiotics are absorbed in the intestine and can make UC much worse, even increasing the likelihood of catching C-diff, a severe bacterial form of Colitis that can be fatal if it is not treated correctly. In addition, it never leaves the body once you get it and can come back if you take serious antibiotics. My friend Ghislaine got it once and from then on every time she took antibiotics for strep throat, which itself is made more likely by taking immunosuppressants. It’s a vicious cycle. C-diff was also included in the almost-lethal mix my dad contracted two years ago, so I’m scared sh*tless. Bathroom humor! Anyway, Dr. Dotz cut the blisters open to take a sample for lab tests and then had me on a regimen of putting on various creams up to 9 times a day to treat my eyelid in case it was actually eczema or impetigo. It was an extremely sharp stinging pain that made me go slightly crazy. At the same time, pain like that simply doesn’t compare to abdominal pain because it doesn’t rip you from the inside out. A week later I got the results back, and I indeed had herpes on my eyelid. When I went back to make sure the coast was clear, Dr. Dotz told me that “we” had “done some good work.” He later told my dad that he had been really worried about me and I had “dodged a bullet.” I was lucky! Clearly, the team of doctors I had in California was truly excellent. I felt like my doctors really cared about me and were invested in the future of my health.

I also suffered from terrible insomnia with prednisone. The second time around (my first 10-week course had been the summer before) I had insomnia but didn’t have the incredibly energy or acne from the first time. Thankfully, my moon face didn’t get too moony either. After two weeks of not sleeping or sleeping one to two hours a night, my mom made me call Dr. Hosseini and tell him I was having a side effect. Sometimes I really needed other people to prompt me to take care of myself. Unfortunately, I couldn’t just stop taking prednisone because, other than the fact that it saved me from an extended one-month hospital stay (Dr. Hosseini threatened me with that when he was trying to get me to do a picc line), it has to be slowly decreased to prevent withdrawal. Sometimes I repeat myself in my blog posts because I doubt many people, other than my biggest fan George, read them all. Thanks George. So Dr. Hosseini wasn’t at all surprised and prescribed me with some Ambien. After a month it didn’t work as well so I had to alternate it with benadryl. Luckily, I had friends studying abroad in many different time zones of the world so someone was almost always on skype or gchat. I also didn’t have any events that I had to be super alert for and I wasn’t functional anyway. A few weeks later, as I decreased prednisone to more manageable levels, I was able to get to sleep all on my own.

The Saga: Part 7 - It gets better

Toward the two-month mark of azathioprine, my doctor, Dr. Hosseini, started preparing me for surgery in case azathioprine didn’t work. My general practitioner, Dr. Birnbaum, who is one of the most supportive and helpful doctors I have ever had, recommended that I go to UCSF for a second opinion (University of California at San Francisco), which has a worldwide reputation for surgery and general quality of care. Dr. Varma at UCSF told me that she doubted azathioprine would work since I had failed every other immunosuppressant and suggested either a clinical drug trial or surgery right away. I was still having serious symptoms like significant internal bleeding with high doses of prednisone, a bad sign. Most people are perfect with prednisone (although Dr. Hosseini reminded me once that some people do not even respond to prednisone, so I was lucky).  The clinical drug trial was similar to Remicade and had an incidence of fatal brain damage. Dr. Hosseini took one look at me when I told him the situation and told me that I had been through too much to endure a clinical drug trial. I decided not to stop azathioprine because I only had two weeks left to the two-month mark and I thought it would be hasty and silly to give up so close the finish line. UCSF told me to call them if azathioprine didn’t work and I could have surgery in early December. Although consulting a surgeon was upsetting because it made surgery more real, it made both my mom and me feel better because we knew that it was a realistic option that would truly cure my disease. I would be in good hands at UCSF and unlike with Crohn’s disease, there was a way for me to get better one way or another.

As I started to get better from prednisone (keep in mind, I still was by no means functional and my functionality depended on high doses of steroids that were not sustainable) I wanted to leave my house after having been stuck there for over four months. And when I say stuck, I mean stuck. My dad had an architecture conference in Las Vegas so I invited myself. I wasn’t 21 and I couldn’t drink alcohol anyway but I didn’t care where I went as long as I went somewhere. I walked a little down The Strip but I couldn’t stand or walk for long. Still, the water fountain shows at the Bellagio were fantastic. When I walked down the street, I felt like yelling to the world, “I am walking down the street!! This is absolutely thrilling!” I wish I could recreate that feeling of being out in the world for the first time in so long and not being able to contain my joy. It’s almost how I imagine what it would be like to get out of prison; I had just been released from the prison of my own body. That absolutely pure happiness was so unforgettable that it was almost worth the traumatic months that preceded it. At the same time, the important luxury of health is being able to take those experiences for granted. I took a road trip with my mom to Oregon and I got to see beautiful Crater Lake. While I was in Oregon, I suddenly started to feel much better. I just felt…better. Although I was still in absolutely unbearable amounts of pain, I had more energy and I generally improved after morning bouts of sickness. I was a little more myself and my parents started to notice. I waited a while to tell anyone because I learned in August that crushed hopes of improvement are simply too devastating. I remember listening to the Beatles’ song “Here Comes the Sun” and thinking that my future was suddenly going to be much brighter. The azathioprine had started to work.

http://en.wikipedia.org/wiki/University_of_California,_San_Francisco

Crater Lake, two months after I started taking azathioprine

My mom and her best friend from high school, the destination of our road trip of freedom

Me at Hoover Dam outside of Las Vegas

In the desert, enjoying being out in the world

The Saga: Part 6 - Hospitals Can Be Fun

Although things looked pretty grim when I headed to the hospital, my daily quality of life turned around when I made that decision. The secret to getting seen quickly is to mention some chest pain (or paint some fake blood all over your head).  I had a relatively short stay in the ER, where the doctors gave me morphine, liters of water and put me back on a high dose of the corticosteroid prednisone. One of the reasons my GI told me over and over to check in to the hospital was that he suspected I was very dehydrated - just do the math with how many bathroom trips I was making a day. When I was still thirsty after receiving two liters of water through an IV in the time span of one hour, my ER doctor raised his eyebrows and said, “You are VERY dehydrated.”  He decided that the infusions of Remicade just weren't working and agreed with Dr. Hosseini that I "would not make it" (I still don't know what that meant) until the immunosuppressant pill Azathioprine might kick in a few months later. You might be wondering why not combine Remicade, Azathioprine and Prednisone. Since they are all heavy-duty immunosuppressants, the risk of life-threatening infection goes through the roof if all three are combined. You might also be wondering why my doctor didn’t take me off Remicade sooner and switch me to Prednisone. The problem was that I had responded a little to Remicade and we all hoped that I would improve after more infusions. Unfortunately, I simply couldn’t make it through the waiting period. In addition to Ulcerative Colitis that was out of control, the ER doctor thought that I might have had a stomach ulcer that went undiagnosed for months. Since my stomach always hurt, I didn’t think that it hurting more than usual was significant.

My hospital stay was entertaining as there were guards stationed everywhere. My dad did some strategic eavesdropping and discovered that there were some psychotic patients. I could have told him that! They were being strapped to their beds and screaming! Anyway, that provided a welcome distraction. Before I left, I convinced the doctors to give me an extra dose of morphine and I felt absolutely amazing. Sometimes people ask me what morphine is like and the best adjective I could use to describe it is "nice." Although the way it makes you drift in and out of awareness is a little unsettling, it's a wonderful break from the stress of physical pain. When I arrived home, the two British exchange students who live with my parents asked me how I was - I do not remember this, but this is what they tell me. I apparently answered, "I'm on morphine!" as if that would mean something to them.

The next day I felt exponentially better. I started eating again and I was happy.  Although I couldn’t going back to DC because there wasn’t enough time left in the semester for an internship, I called my congressional internship from the summer and made an arrangement to come back in a couple days per week. They apologize a couple times when they gave me boring tasks like filing, but all I could tell them was that I was so thankful not to be at home in bed that I would find pretty much anything, even filing, intellectually stimulating. Plus, instead of being one solider in an army of interns, I was the only intern on the days I went in. I got to know the staffers really well and I got to meet with some interesting constituents and interest groups. 

The other days of the week I went to the doctor or the lab to get tests done.  When I first started taking azathioprine, I had to get tests done at least once a week to make sure that my liver, iron levels and blood cell count were satisfactory. I got tested for the bacteria responsible for 50% of stomach ulcers but I didn’t have it. The pain between my ribs started to come back and my doctor put me on a stomach ulcer medication that made me feel better and that I still take, eight months later. To this day, when I stop taking it the pain comes back. 

The Saga: Part 5 - It gets worse

When I finally decided to take a semester off, I felt less pressure to get better. I just let my health run its course and relaxed. I spent afternoons in my garden and waited until my parents got home from work. Berkeley has "Indian summers," which means that September and October are hotter than the summer months. Counting on getting better in a few weeks, I hoped to find an internship in the Bay Area or go back to DC and stay in an off-campus room I had rented for the fall. In mid-September, Dr. Hosseini had me start taking the pill Azathioprine, which takes months to take effect. He strongly encouraged me to gain weight so that I could increase the dosage. At that point I weighed about 100 pounds. He hoped that Remicade infusions would carry me for the next couple months until the Azathioprine kicked in. At that point I was on both Remicade and Azathioprine, and the plan was to stop Remicade once Azathioprine worked. The combination is highly discouraged on account of side effects like lymphoma and some doctors won't even let their patients combine them for any amount of time. 

Flag fun

In September I also started my famous flag project. I wanted something to do but I couldn't go anywhere or do anything that required significant thought power. I don't know the flags of the world as well as I should, and since I had more time than anyone should ever have, I thought that drawing them by hand would be a great idea. When friends came to visit it gave us something to do together and I didn't have to entertain them. They didn't say anything about my health, but I could tell they were concerned. I was able to function in the little world that I had created for myself, but I was nowhere near normal. Of course, I didn't know that at the time. I spent my days trying to sleep, trying to fight pain, and trying to eat. And although I don't like to mention it, I went to bathroom 10 to 20 times per day and needed to be near one at all times. That really limited where I went! My parents set up a card table in my room for me to do jigsaw puzzles. I went through a couple per week. I disliked my dad's puzzle style - he goes for color instead of shape, and it looks like he is stabbing the puzzle when he tries to get a piece in. At least I was present enough to be annoyed!

My sister came home for a few weeks and she set up a weight gain chart to encourage me to eat more. It didn't really help me because I started to lose about half of a pound per day. The chart just went down and down until I stopped plotting data points. I weighed myself every morning and I eventually started lying about it to my parents. I felt like I was disappointing them and I had started to give up on eating. It was just so difficult and unpleasant that I would rather do anything else. I simply couldn't will myself to swallow. My mom didn't understand why I couldn't eat and I didn't either. When I got down to 93 pounds, I just started crying. I didn't know what was happening and I had no idea how to stop it. My mom couldn't convince me that I wasn't eating enough so she decided to have me keep a food diary. I realized I was taking in 200 to 300 calories per day. I had always been able to accomplish what I wanted to with my will, but suddenly I couldn't, and my life was on the line. 


Dr. Hosseini decided he wanted to make sure (for the third time) that I didn't have Crohn's disease because my colonoscopy in August had shown a "giant cell" and unusual depth of the ulcers in the tissue in my colon, both things almost always associated with Crohn's disease and not UC. This time I got to do a capsule endoscopy, which is actually really cool. Dr. Hosseini wanted to check to see if I had ulcers in my upper intestine - which would mean I had Crohn's - so he didn't need to make me go through another colonoscopy. Instead, I swallowed a pill that had a blinking light and a camera. I did the same prep for a colonoscopy but I was allowed to eat a couple hours after I swallowed the pill. The nurses taped transmitters on my stomach that recorded the pictures the camera took and stored them in a device that I wore as a belt. After eight hours, I went back to the doctor's office. They took the device back and took off the receptors. A week later, Dr. Hosseini told me that he had reviewed the film (your dream job, right?) and I definitely did not have Crohn's. That was a relief!

At each doctor's visit my doctor began to tell me to go the hospital if symptoms persisted. Each time I would clarify, "You mean, if they get worse?" He would say, "No, if they stay the same." Well, I thought, I can ignore that piece of advice. I was surviving and I didn't think there was a limit to what I could withstand. Hospitals are dangerous places that are much less comfortable than home. I could get Mersa or C. diff, common infections in hospitals that can be worse than what the patient came in for in the first place. My doctor got the picture and filled out a form for a picc line, which is an IV of sugar and water administered by a home nurse. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. I called my friend Ghislaine (pictured previously) who had experienced a picc line in the hospital. She told me, "Don't get a picc line! They are the worst! One of my veins collapsed. Just eat, eat, eat. You can do it." Well, I thought, I'll just have to try harder. 

A few weeks later I suddenly got significantly worse. I threw up during the day. I started waking up in the middle of the night to throw up. I threw up when there was nothing left to throw up. I started having a terrible pain between my ribs that I mistook for chest wall inflammation. I started taking Vicodin around the clock but it wasn't good enough. Previously, I had taken Vicodin every other night so that I could sleep (otherwise I could not sleep on account of the pain). Then I switched to oxycontin. But since I was throwing up all the time, I couldn't keep the pain killers down for long. As I sat in the bathroom one afternoon, I realized that I wouldn't mind not being alive. It wasn't like I wanted to kill myself, I just for a moment felt indifferent to being alive. I had never felt that way before because every second I was alive was precious to me. Living is just beyond belief! So at that moment, I decided that I absolutely had to go to the hospital because not wanting to live, even if just for a second, was the worst thing that had ever happened to me. 

Preview

My friend Ghislaine after the first surgery. She looks happy because she was on morphine. The bandage is over the stoma, which is the upper intestine turned inside out. My future in four days!

Ghislaine's upper intestine a while after the first surgery. Not for the faint of heart. 

What I Look Forward to After Surgery

1. Not waking up every morning in pain and being able to sleep in.
2. Not being tired all the time.
3. Being able to go from one place to another without going home to rest in between.
4. Being able to eat a wider variety of things: peaches, tomatoes, pizza, french fries, salad, steak, ice cream, milkshakes, hamburgers, chocolate milk, apples, celery.
5. Parties!!!
6. No more infusions or endless pills.
7. Having a badass scar.
8. Not feeling like I have the flu all the time.
9. Being able to say "I am doing well" when someone asks and really mean it.
10. Staying up late (I get too tired now)
11. Taking walks.
12. Working out.
13. Playing soccer.
14. Going out to eat in restaurants.
15. Taking public transportation and having adventures in the places I live - San Francisco, DC.
16. Not feeling nauseous when I eat.
17. Eating because I want to, not because I have to.
18. Talking about things other than my disease with my friends.
19. Having problems that don't actually matter in the big scheme of things.
20. Seeing my parents happier because they won't have to worry so much about me.