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After what feels l ...

Posted Nov 04 2009 10:02pm

 After what feels like the longest month of my life and a grand total of 20 days in the hospital, I am finally on the road to serious recovery. The hospital was intense, to say the least, but it was certainly worth it in the end. There were some good days, some bad days, some setbacks, and some tears, yet here I am, all in one piece and (at long last) ready to break it down. Where do I begin? Usually at this point there is some sort of grand exposition to introduce the story, but I’ll be honest, it’s not that glamorous. The day before surgery was relatively quiet; I drank tons of fluids and around5 p.m.commenced the delightful BM-inducing Phospho-soda. It wasn’t that bad, actually, since I hadn’t eaten anything it was mostly liquid shooting out of me for a few hours. I went to bed early and naturally, hardly found sleep. Rested assured that problem would resolve in mere hours. My parents and I rose before the sun, around5 a.m.I pulled on jeans and a hoodie, kissed my drooling, half-conscious sisters goodbye and climbed into the back of our Land Rover with the classic “butterflies in my stomach.”

We went through the typical admitting insurance process….technical nonsense, they put the medical bracelet on and then we went to meet with the anesthesiologist, Dr. White. Only one person could come with me to the recovery room, so my mom volunteered. I gave my dad one last hug and said, “Next time you see, I’ll be UC free!” We ventured upstairs where they stashed me behind a curtain. On the bed sat a blue shower-like cap, gown, and those goofy medi socks with the sticky bottoms that are always itchy. I changed, looking nervously at my mom. Her reassuring gaze kept me steady the entire time.

When Dr. White and my surgeon Dr. Hurst arrived, they were optimistic and ready to go. Unfortunately, because I had no liquids in me and such tiny veins, they couldn’t find a place to stick the IV needle. So they said, “All right, we’ll just take her in.” It all happened so quickly, I turned back and my mother’s eyes were filled with tears as they wheeled me into the OR. It was freezing cold! I swear I thought they’d moved me to an icebox. There were at least twenty people in gowns bustling about the room, messing with tools and computers. Things were beeping like an army of robots. Dr. White told me to relax and she put a mask over my face. “Breathe deeply, sweetie,” she cooed and the next thing I knew, I was down for the count.

Much of the information I am about to relay to you comes from not my own sources, but those of my parents. The surgery was a complete success, first of all, commencing at9 a.m.and finishing somewhere around3 p.m.According to my mother, Dr. Hurst was all grins when he came to see them, saying everything looked fantastic and that it was a wise decision to get rid of the colon when we did. There was certainly no hope for it. They created the j-pouch and ileostomy without any issues. My hemoglobin level (blood count) was, however, at a 7, so they had to do a blood transfusion during the surgery anyway. At7 p.m., Mom and Dad came to see me in recovery. In my daze, my father informs me, I said some very interesting things about penguins in an art contest inNorway. Drugs. Can you dig it?

I finally woke up in my hospital bed to find that I had a roommate (which by the way, is not fun, so request a private room till you’re blue in the face…it is so much better!) My parents could not stay with me so I would have to suck it up alone. It didn’t matter much the first night, I was so medicated I didn’t even know my own name.

  I awoke the following morning very conscious of my surroundings. I saw my stoma for the first time. I realized then that the ulcerative colitis was officially gone. It was eliminated! Finito! Toast! I smiled to myself, examining my stitches and my swollen belly. Everything looked okay. Just as I had expected. Everything I had seen in all the pictures and what the doctors said was right where it should be. I had an IV in my left arm hooked up for fluids and PCA pump. I also had a back-up IV on the left side of my neck (which was uncomfortable, but tolerable) I realized they had even tried to poke my feet for a line! I was just covered in pricks (I blame those little veins). Human pin cushion to say the least. I also had a catheter to eliminate urine. Finally, they had placed alternating leg pump wraps around my legs to ensure good circulation. Other than that, I really couldn’t complain. I didn’t have a nasal-gastric tube or a rectal tube, so thank goodness!

The doctors and nurses are absolutely adamant about you getting up and walking a good deal. In addition, they provide you with a breathing apparatus into which you take 10 deep breaths every hours to keep your lungs from becoming congested and developing pneumonia. They will give you all medications through an IV until you are able to tolerate liquids. Typical daily meds for me for my shot to prevent blood clots (it burns a little), Pepcid to settle acids in the stomach, and an antibiotic (They found a small infection in a urine sample and it helped…I’m off it now). Of course, the pain meds helped a lot the first couple of days, but I found myself using them less and less as time went on. They also gave me Potassium and Magnesium (which for some reason were low with me). By the end of the second day I was having gas from my stoma and everyone said I could go to clear liquids the next day.

 

(Pictures 3 & 4)

On day 3

I started taking 30 ml sips of liquid every hour (that’s like one medicine cup of water) until the afternoon when I tried some Jell-o and lemon Italian ice. There was a problem with the IV in my arm because it started swelling so they had to move the IV to the one in my neck. Everything seemed to be going all right so far. I was walking farther, actually walking instead of shuffling.

Mom left that night confident I would have a good night sleep. Unfortunately, I didn’t. I threw up. A couple of times. This incident started a trend that would last five days before the problem was resolved. The doctors told me it was normal and recommended I slow down. I tried sips again the next day. Same results that night. They kept me off sips for a day, and then put me back on. They said sometimes it takes a while for your intestines to organize themselves and figure out which way the output has to go. Well, after two more nights of the same sipping/vomiting issue, they ordered stomach x-ray, blood cultures, urine samples, chest x-ray.

After a little over a week in the hospital I was beginning to feel somewhat hopeless. Not going to lie. It was infuriating that things were on such a good course at first and then it collapsed out from under me. Like someone had pulled a trap door and left me in a ditch alone. Well, not completely alone. My parents, sisters, and boyfriend all made frequent visits to see me. I got one of the nicest surprises ever when my uncle fromNew Jerseyshowed up! I had just gotten back from my chest x-ray and my dad and mom were waiting for me. “Look behind the curtain,” Mom said. And there he was! I don’t get to see him often so it really made my day that he came all the way out toChicagofor me. It certainly lifted my spirits.

(Pics)

We met with the ostomy nurse, a charming little woman by the name of Malou, who gave us lessons on changing and caring for the ostomy. My mother learned quickly. It grossed me out. The stoma, at first glance, reminds you of a small red tomato…then it moves. It moves! Oh yes! It does! How strange, I thought, definitely worthy of the Discovery channel. Malou was extremely nice and gave us advice on what to do if we had any problems. Keep the area clean and be gentle with it. It’s incredible because when you touch it, you cannot feel it since there are no nerves! She came every four days to help change and then on the last day to give me some extra stuff.

(Pics)

I had the catheter removed on day 5, which made walking easier and peeing stranger. Your body has to get used to the sensation of urinating again so it’s difficult to tell the first day when you have to go. You’ll also have output from your anus from time to time, leaking old blood and secretions from the surgery. This is said to be normal and healthy. Nowadays, it only happens to me once every other day, if that.

I was incredibly gassy and so the ostomy was a loud little bugger. I’d be embarrassed sometimes walking by someone in the hall when a little “brrrt” would escape my stoma. “Excuse me, it’s him not me,” I’d point to my belly. Others would simply chuckle knowingly.

The output in the ostomy is very liquidy and green at first. The smell is ungodly. As you begin to drink liquids it will darken, and of course, once foods are introduced it gets thicker and starts to look like stool.

Side note: The ostomy nurse put me in touch with another UC patient who was in the hospital on the floor below us because of a vicious flare-up. After a nasty year of UC and no hope with drugs, at eighteen, he decided to have j-pouch surgery. She wondered if I might speak with him one the phone. Psh, on the phone, I scoffed, gimme a wheelchair, he’s only downstairs. So down we went to visit the young weak man whose scenario was all too familiar to my eyes. “I was lucky to get through my senior year of high school,” he confessed. “I just want to go to college, you know?” I did know. Hours I’d spent crying over the fact that I was going to miss out on my next semester at Drake. How unfair it was that I wouldn’t be able to pursue the dreams I’d worked so hard to mold during high school. Suddenly, I felt my ostomy bubble and I giggled. “Well,” I said, “having this procedure will give you your life back, my fellow invalid.”   He had the surgery himself last Tuesday. There was a complication, however, it was resolved and he is doing much better. He should be able to escape soon enough.

At last I was able to tolerate clear liquids! I stayed on them for two days, just to be safe. The red rubber tube was starting to push its way out, which the doctors insisted was fine. A couple of times it came out but they returned it and reminded me not to worry. I started taking Tylenol and Codeine by mouth, as well as my Pepcid and antibiotic, since I could keep things down. I walked and breathed and walked and breathed and kept it up until I needed to rest. They had unhooked me from the IV but kept it in just in case I needed fluids. On Day 11, I ate eggs and applesauce. The stool began to thicken and come out more slowly. I was normally emptying it almost 10 times a day with all the juice and jell-o and water I was consuming, but once food popped into the picture, things definitely moved at turtle speed. The next day, I tried soup and crackers, and to my delight, everything stayed out and came out the right way. Doctors anticipated that I would be ready to leave the following day. That evening, the red rubber popped out. This time, it stayed out. We didn’t need it any longer.

Discharge day couldn’t have some sooner and the ostomy nurse marched in with many goodies (including a two-piece ostomy system to which I am very partial) and she did one last lesson with us. During the surgery, the doctors secure a little tube around your stoma to keep it from sliding back in. They cut it off after two weeks, but since I’d been there 13 days, Malou thought it appropriate to remove the tube. She gave me the thumbs up, asserting I was really getting the hang of things. I think it’s imperative that you become involved in changing your ostomy with the nurse while you’re in the hospital, that way she can show you what you’re doing wrong, how to improve, and you can ask lots of questions. Ostomy nurses are an invaluable source of information. After all, I’ve got live with this critter for three months. I gotta know how it works, right?

I received tons of papers requesting a follow-up and to continue my low-residue diet for 6 weeks. No heavy lifting, no driving for 2 weeks, etc. etc. Any problems call so and so. Prescriptions for Tylenol and Pepcid. Get me out of here already! I thought desperately. They took out my IV, I hopped in my wheelchair and on a rainy Thursday afternoon, I returned home.

 

Unfortunately, I wasn’t quite finished with the hospital. After only five days of being at home, I began to feel serious cramping pains and had no output from my ostomy for over 24 hours. Finally, I threw up and was rushed to the ER. Following a stomach x-ray and replacement of the red rubber tube into my stoma, we discovered that no food was the culprit for my blockage, merely a swollen intestine. The small intestine had enlarged to such a degree that nothing could go through as I was supposed to. The red rubber allowed everything to flow through until it slid out on its own again. My second trip to the hospital wasn’t nearly as difficult as the first. Admittedly, I was discouraged with the idea of being back so soon. However, I couldn’t let it overtake me. A negative attitude would have only kept me in there longer and nobody wanted that! This time I had my own room and my mother was good enough to stay with me at night on a cot provided by the staff. The doctors were unable to explain why the intestines swelled like that, but advised me to continue walking and drinking as much as possible. I spoke with Malou about it and her theory is simply that the bowels are manipulated and moved around so much during surgery that sometimes it takes them a while to get adjusted to the new responsibilities it must take up since the colon is gone. She said in time it should resolve itself. With renewed hope, I departed on another rainy day dead certain this would be my last trip until my takedown. Since then, I’ve gotten the gist of life with my new little friend.     

 

I cannot even begin to elaborate on how peaceful it is at home. You really appreciate the little things. Like the lack of people waking you up at4 a.m.to take your vitals or drawing blood or give meds. You cannot rest in the hospital; I don’t care what anyone says. The true healing of body, mind, and spirit begins at home. To be surrounded by my family, all that is comfortable and easy, sleeping in my own bed (incidentally my parents took me mattress shopping to get a new bed; now I’m sleeping on a cloud). I’ve been moving around a lot. I go on the elliptical for five minute intervals three times a day. I go for short walks around the block with my mom. The weather has been really nice, so I have taken advantage of the pleasant breeze and September sun.

My parents are relieved. You can see it clearly. NO question about it. They both look exhausted. After driving half an hour back and forth switching off every day (with gas prices what they are), making sure my two younger sisters get off to school and work, running errands, keeping the house clean, feeding our many pets (two black labs, an African gray parrot, and two guinea pigs), and working, I don’t know how they’ve managed. They are truly remarkable people. I admire and appreciate them now more than I ever have in my entire life. They really will go the distance for the ones they love. Stick to your family! They’ll always be there for you through it all. You can lean on them for sure.

Foods are going well so far. Introducing them one at a time is my motto. I usually eat six little meals throughout the day and compensate by drinking a lot of water and juice. Since the colon absorbed most of the water in my body, the small intestine simply releases it. Therefore, it is not only important but ESSENTIAL to DRINK, DRINK, and DRINK! May I say I am in love with the fact that I can eat ice cream again? Since I had UC, ice cream was a big “no no” for me. I tried some chocolate ice cream with anxiety and it sat without a problem. YES YES YES! Oh and I had pizza for the first time last night….wonderful, fabulous, supreme. I missed food! I am being careful to take small bites and eat small portions, nevertheless. Don’t want to rock the boat. I’m emptying the bag about 6 to 8 times a day now. Things are really starting to thicken up very well. My stool, once fluid and green, looks almost normal, if not softer. I’m feeling more energetic every day. I started taking my vitamins and calcium today. I also tried yogurt (I’m not a big fan but they say the probiotics are good for your guts) and I might make that a habit if I can find a flavor I like. In the meantime, I’m resting tranquilly in my abode making a good recovery.

I had my follow-up with the doctor this week as well. I met with my surgeon, the ostomy nurse, and the surgeon’s nurse. It seemed to take forever waiting, and I honestly felt sort of apprehensive being in the docor’s office again. Everything couldn’t have gone more smoothly in the end. My TAKEDOWN IS DECEMBER 1st! So no more ileostomy come Christmas time! Hallejuah! I also scheduled a test date for my pouch Nov. 19th. They have to ensure that my pouch both functions and healed properly. I take a barium enema (yuck) and then they take an x-ray of the pouch to see if it will expand and contract the way it should. At least, that is my understanding of the process. The second surgery will only take about an hour and a half, since all they have to do is put the end of my intestine back into my body and secure it to the rest of my new plumbing. The hospital stay should be only about 5 days. With my track record, that would be nothing short of a miracle.

I’ve been having trouble posting pictures with this text for some reason so I decided I’ll just do it all separately. I’ll post pictures from surgery next! Thanks for being so patient and I apologize for taking so long. The last month has been a long and arduous one.

I’ll keep you updated as things progress! Take care everyone! Good Health!

 

P.S. I have had an overwhelming response from people all over the country voicing their stories and lending their support. They have been utterly kind and I am so humbled by all of their experiences, I feel privileged to speak to them, to know them, or even just to e-mail them. My goal is to provide insight into the world of my surgery for educational and emotional purposes. My family and friends near and far, in cyberspace andIowaandNew JerseyandFloridaandIndianaandArizona, gave me strength to push forward. When I was at my weakest in bed and wondered to myself, “Did I do the right thing?” I remembered what everyone said, “Be brave, good luck, you’ll do fine, we’ll be thinking of you.” With the knowledge that I had a whole great big family out there who cared, I took a big breath and whispered, “I can do this.” Thank you to everyone who has been such a big support for me and for my family! Your e-mails, comments, letters, cards, and wishes are most welcome and I’m again so grateful to have an extended family such as this!

 

 

    

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