UC to J-Pouch Story

Photos: Stephanie L.

Greetings! I believe intros are in order. I’m Stephanie, 21 years old, and have been a UC patient since my diagnosis Jan 2, 2005. It makes me laugh because that very date happened to be my 18th birthday. It was the most unusual gift I’d ever received in my entire life. My story isn’t very different from many other cool cats who post around these parts. I’ve been through every textbook medication with little success and let’s face it, steroids just aren’t going to cut the mustard for the rest of my life. I’m not interested at all in clinical trials. I haven’t been able to go to school, work, or hang out with my friends. In order to get my life back, I feel that j-pouch surgery is the best choice for me. I’ll share my journey here and I’ll go into greater detail on my blog at http://www.stephlws.wordpress.com I’d like to give a quick shout-out to Mark and Megan for giving me the opportunity to tell my story. Their journey and the journeys of others on the site helped me find the courage to come this far, and I feel as though I’m finding a new family. Thank you!

MAKING THE DECISION

Forgive me if I get crazy with words. I love to write and in a way it acts as my therapy. Making the decision was really a no-brainer for me. Everyone has a breaking point and I reached mine a long time ago. There comes a time when you have to ask yourself, “How much longer do I want to suffer?” “How much longer can my family and friends endure this?” Digestive diseases, as we all know, have an effect on not just the patient, but everyone in the patient’s circle. Family, friends, and even co-workers. It’s a life-changing decision to be sure, but if you have enough reasons, it is the right one. All I had to do was think about how much I longed to go back to school. How much I missed going out with my friends. How I’d like to eat the foods I enjoy without consequence. How nice it would be to go out and not have to worry about bringing extra underwear or scoping out the bathrooms in every public place. How great it would be to finally get a good night’s sleep in a BED instead of being hunched over the toilet. It made sense.

I received a colonoscopy on July 23rd after my third infusion of Remicade. I’ve been flaring since my second and things are not getting better. The GI concluded that the pancolitis was indeed active, and therefore, the Remicade had failed. By this time I had already made the decision to go through with surgery, so he referred me to the best surgeon he knew. Before my scope, I spent as much time as I could muster doing research on j-pouch surgery. I read books, checked every medical website I knew of, researched my hospital’s approach to laproscopic surgery, and of course, got in touch with people who’ve had the surgery. All of this information I poured over and over until it stuck in my brain. At last, I was ready to meet the man who could potentially put an end to everything that was making my life misery.

MEETING THE TEAM- JULY 31st, 2008

The first meeting is always hard. You spend lots of time twiddling your thumbs in the waiting room, thinking, “I am sure this is right?” My blood pressure was a little high. The nurse asked me, “You nervous, honey?” I laughed. “A little.” She had no idea. There were routine questions about my medical history and a quick exam at ears, nose, throat, etc. The surgeon came in and explained the surgery in detail, its risks, its benefits, and what to expect afterward. Then it was my turn. I opened my notebook lined with questions I’d gathered through my readings, e-mails, and phone calls. I think it’s really important that you ask questions right off the bat. It not only eases your fears, but helps you better prepare for what’s to come. He answered all of my questions and it honestly did make me feel more confident about the choice I was making. He was the one. After the routine listening to heartbeat, checking eyes, ears, throat, abdomen, etc. (and a rectal exam), he agreed that I was an excellent candidate for surgery.

I met with the surgeon’s nurse, who said she would be guiding me every step of the way and told me what to expect before surgery, how to prepare, where to go, etc. She is, I believe, a great source of information. I signed the papers with glee and met with my new best friend…the ostomy nurse. She brought in a bag and gave me an overview of how it works and how I’ll be using it. She also had me sit down, lean forward and backwards, and move my legs around to determine to best place to position my stoma. It cannot be in a spot on your stomach that’s in the middle of a crease (which I think is her nice way of saying belly rolls :p) We found the prime location without a problem and she used a surgical pen to mark the spot. She said it should last until the surgery.

5 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, around 5 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.”

The stoma will be around the size of a quarter, although the mark is admittedly a bit smaller.

The stoma will be around the size of a quarter, although the mark is admittedly a bit smaller.The ostomy nurse was fantastic! She says there's really nothing you can't do with it, it's just a TEMPORARY outlet for your waste, nothing more.

So I’m 16 days away from Step 1. I feel good about the team I’m going to be working with. I hardly feel nervous at all. My family is excited too. “It’s the beginning of the end,” Mom says. “Before you know it, you’ll be back at work.” My friends are also incredibly supportive. Everyone is curious about the procedure; I think that it’s fantastic. Having all the facts straight dispels misunderstanding, fear, and ridicule. “You can handle it! You’re a tough cookie!” they insist. It makes me stronger to know they have my back. I’m sure it’ll help me during recovery and of course, when I have the ileostomy. More updates to come!

8 DAYS BEFORE STEP 1

I am feeling a little nervous, but overall ready for the surgery. I’ve learned as much as I could first off. I know what to expect. I feel confident in my surgeon and his abilities. No worries there. I’ve been talking to many people who have undergone the surgery. Not only have I discovered kindred spirits, but they are great sources of information and advice. After all, they’ve lived it! Who would know better? The unyielding love and support of family and friends has given me the backbone to proceed with my surgery. I know I am making the right decision. I don’t think too much about what might go wrong. The biggest key has been keeping my mind occupied with things I enjoy. Watching my favorite movies, reading, writing (obviously), playing a game, or even taking a short walk does wonders. You can’t spend any time worrying about “what if?” when you’re two hours into a heated game of Monopoly. After all, you need to be careful when you get near Boardwalk and Park Place with two hotels, right? When surgery does come to mind, I think to myself, “I am getting my life back.” I remind myself how far I’ve come-all the hospital visits, the many pills, the sleepless nights, the lost friends and then it all makes sense; I’m making the right choice. All of these factors have helped me cope with pre-surgery apprehension.

Eleanor Roosevelt once said, “You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, “I have lived through this horror. I can take the next thing that comes along.” . . . You must do the thing you think you cannot do.”

3 DAYS BEFORE STEP 1

I’m as ready as I’ll ever be. My dad made his infamous chicken parmesan as my “last supper” before I begin the clear liquid diet tomorrow. Why not go all out, right? I’m not gonna be eating much in the next week! Thursday morning, mother has made an appointment for me to have a nice massage and haircut. “To soothe the nerves,” she says. My confidence has boosted thanks to the companionship and kind wishes of my fellow j-pouchers. Their strength and positive attitudes have given me the will to press on with eagerness. Mom and Dad are going to be there with me on Friday. Mom plans to stay with me. I don’t know what I would do without her. She has been beside me through every step of this: from diagnosis to making this decision. She is without question, the most selfless, courageous person I know on this planet. My heart transcends gratitude to know she will be with me when we eliminate the menace.

So tomorrow, just water, tea, juices, popsicles, and jello (nothing red of course!). I swear I hate to admit it, but I have grown so accustomed to this process that it hardly bothers me anymore. After 3 p.m. on Thursday, I start the ritual of elimination. Tons of liquids before and after taking the Fleet bowel cleansing beverage to stay hydrated. Even though I’ll have been on a liqiud diet for almost two days, I realize the importance of getting rid of the last of the stool and other bacteria. It’ll decrease the risk of infection during/after the operation. I have to suffer one more bad night in the bathroom on Thursday (thanks to the Fleet phospho soda) but that’s it…hopefully. ONE more bad night. I am ready to sleep through the night again. Really.

I meet my new friend, the anethesiologist at 6 a.m. Friday. 7:30 a.m. Kiss that nasty colon bye-bye!

FINALLY…ONE MONTH LATER!

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 around

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 at 9 a.m. and finishing somewhere around 3 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. At 7 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 in Norway. 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 from New Jersey showed 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 to Chicago for 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 at 4 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 and Iowa and New Jersey and Florida and Indiana and Arizona, 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!

Day after surgery: three of he six incisions are hidden. The c-section is below the belt, there is one small one below my belly button and another on my right side obscured by the bag. But it all looks good so far!

C-section incision where they took out my colon

Finally coming out

Finally coming out, tummy still swollen from surgery bu output will get thicker and look more like stool once I start eating solid food

Changing the bag for the first time: The little red rubber ring is to keep the stoma from going back inside. It came out on my last day at the hospital (Day 13). You can also see one of the incisions I mentioned earlier that was hidden by the bag.

My Uncle Glenn came from New Jersey for a surprise visit! He brought a little friend with him to cheer me up: Lil Griz!

My Daddy and I: he's always King of Laughter so it was nice to have him around

Solutions to Problems: Stomach x-rays revealed that my intestine was swollen which is why nothing was coming out, so a red rubber tube inserted six inches into the intestine through the stoma allowed my output to pass through. after about four days the tube came out on its own and I didn't need it anymore. They utilized this method when I had to return to the hospital five days later, only they used a thicker tube. I suppose it's better than having a tube in your nose.

Home for the first time: I am thoroughly exhausted but glad to be in a familiar, warm place. You can hardly see the bag at all. I lost a grand total of 20lbs, but since I've been home I've already gained 5 back! But there's 5lbs. I'm never going to get back...my diseased colon! Woo!

My New Friend: He moves, he makes noise, he puts it his two cents...he's weird. He doesn't hurt. You can touch him and I don't feel a thing. Changing the bag for the first time at home. The pink ring on my skin is from the super strong adhesive of the bag flange. I change it every four days now and only after taking a shower so it's moist and comes off easily. You can tell here too the incisions are scabbing!

Healing! No more strips! You can hardly see the incisions at all! Looking good!

Belly button incision: so here it is, my shrunken belly button. Thanks to the surgeons, it is now smaller. I forget it's even there since the bag covers it most of the time, but I just wanted to show you.

UPDATE: I spent my first full day out of the house and it was FABULOUS! Went to the mall with my mom and sister to shop for her sophomore homecoming. I had a nice dinner out with my boyfriend. I almost forgot I had an ostomy bag…until it made noises, which nobody but me even heard anyway. Emptying in the public stalls for the first time was a bit of a challenge. I used the handicapped stall because it’s bigger and usually has a place to set your things. When I empty my bag, I’m not gonna lie, the smell is horrendous, and it literally makes me gag, so I use a product called M9 to help deodorize the stench. You just squirt some drops in after you empty your bag into the toilet. Unfortunately, it doesn’t always help. Fun fact: my ostomy nurse said putting two tic tacs in your bag would help. ??? I’ll conduct some tests and get back to you. I clean out the end of the bag with sanitizing wipes. I also carry an emergency changing kit with me just in case I need to change my osomy bag. Needless to say, I carry around a lot of gear with me, but it’s a hell of a lot better to only go to the bathroom three times when I’m out than fifteen times! And now, I don’t even need to rush. I am loving it!

BODY IMAGE AND A GOOD CAUSE

“I have a pooch.” “My thighs are huge.” “I have NO butt.” “My nose is too long.””My hair is a mess.” “I don’t like my smile.” Things my girlfriends and I have all said to each other while looking in the mirror. Now imagine how that is compounded when you have an ostomy. “I look like a freak.” “No guys will ever date me.” “I wonder if anyone else can see it…””There’s no way I can hide this.” Even without an ileostomy, many women worry about they appear to others. I won’t lie to you; I am one of them. I’ve sat at the kitchen table flipping through VOGUE wondering how in the world those women get so slender and gorgeous. I’ve poured over every television ad for botox and implants and goodness knows what else to keep women looking young and fresh. The standards are high. I am looking at this strictly from a female POV. I do not speak for the male community, although I am sure they face this dilemma on some level in their own way. When you have an ileostomy/colostomy, your self-image can change dramatically, but only if YOU let it.

When I first got out of the hospital and started putting on something besides a hospital gown, it was a disaster. Aside from the fact that many of my clothes are too big now, I couldn’t find a way to wear my bag comfortably and so it was kept out of sight. My initial reaction was this: I cried in front of my mirror for about ten minutes, silently swearing that I would not be going out for the three months I had to have this ileostomy. My boyfriend would find me unappealing. My friends would stare. Awkward questions abound. All of a sudden, several things happened in quick succession. My favorite pair of jeans began sliding off my hips. My stoma issued a wicked, rattling “brrrrrrrt,” and I began to laugh at myself.

I knew it was going to be okay. I opened up to the fact that I was reacting like any young female would in this situation. There were, in fact, a few ways to make my bag discreet when I went out and to feel comfortable with my body in this state.

I started with the underwear. I’m a boyshort/hipster kind of girl when it comes to underwear. I knew this would have to change for me. My mother and I ventured into the world of waist-high Flexees, something I didn’t think I’d have to do until I was…let’s just say more mature. I’ll tell you…I’m so glad we did! They are a miracle in the making. No wonder so many women swear by them. They are soft, comfortable, not too tight so they don’t rub against your stoma, and conceal seamlessly. I noticed you won’t have much trouble hiding your bag with a one piece system, but as I prefer the two-piece, I had to find function and comfort in other realms. All I do when I go out now is pull a pair of flesh tone Flexees on, tuck my bag carefully inside, and off I go! Problem one solved! Nobody notices. Nobody asks questions. Even I sometimes forget I have it.

As for feeling comfortable with myself….that I admit, is STILL a “work-in-progress”. My boyfriend can tell me a hundred times (I think he has by now, bless him) that I am pretty and he doesn’t care about the bag or the stoma or the noises and that he’d continue to love me if I had it forever. (And, I assure you, ladies, he is a real guy and no, he is definitely not available.) Despite his constant reassurance, I can still look in the mirror and feel somewhat downcast by what I see. In those moments, I literally tell myself: “THIS IS ONLY TEMPORARY. YOU ARE STILL YOU. IT COULD BE WORSE. SHUT THE HELL UP!” After that, I usually carry on without complaint.

For those who are single with an ileostomy/colostomy, I believe it can be even more of a hurdle to overcome. To dare to share your situation with someone new is absolutely your choice and rejection is something we all fear. The message, however, is the same. YOU ARE STILL YOU.

I recognize that I could be a lot worse off. This ileostomy is simply the chance to let my good friend the j-pouch heal and become accustomed to his new surroundings. Come December, the ileostomy will be gone and I will be ready to face the world again in a brand new way. In the spirit of good self-esteem, I have thrown out all my magazines. I try not to think about what society expects me to look like anymore. WE ARE UNIQUE. There is nothing wrong with us. Those who have permanent ileostomies/colostomies go on to have careers, get married, and have children. No big deal! There is no shame in it. It does not define us as individuals. We don’t have to feel bad about ourselves. It’s not something that is easy to adjust to. But, like every other obstacle in life, we can either rise to the occasion and surpass it, or turn back.

As for intimacy, I hope to devote a whole post to intimacy with an ileostomy soon. Keep checking back for updates!

And now, for a cause very near and dear to my guts. If you’ve been following the blog, you are already acutely aware of my involvement with the CCFA’s Team Challenge Marathon for Crohn’s and Colitis. I have joined in the fray with my own fundraising page for the cause. Please, please, please, check it out to learn more and make a contribution. Last weekend, my mother and I attended the family day training session. Some of the walkers and runners brought their children; we all made signs and held our pom poms high to cheer on the team of mothers, fathers, best friends, and siblings as they trained with the fabulous coaches. With motivation like that, they’ll be ready for that marathon in no time! So spread the word to your friends, families, and co-workers! We can all make a huge difference and hopefully put a stop to the rampaging wrath of IBD. I’ll keep the site on the side bar as well for anyone who’s interested. Thank you so much for your consideration!

http://www.active.com/donate/MI09illinois/stephanielewis1

Best of health to everyone! Take care!

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21 Responses to “Photos: Stephanie L.”

  1. Michele said

    Good luck Stephanie! Look forward to reading your story and hope all goes well for your surgery.
    Michele

  2. Mary said

    Hi Stephanie,

    I’ll be following your story and sending you good energy for fast healing. It will be good for you to have the surgery and get back your life so you can be a happy and healthy 21 year old. You seem so positive and not scared, how are you keeping your spirits so high?

    Mary

  3. Casey Hall said

    Hey Stephanie,
    My surgery is scheduled for 28 Augsut and I’m freaking out. How have you dealt with the pre-surgery gitters? I’ve tried all the meds…pred, asacol, rowasa, entocort, steroid enemas, Rowasa…and I’ve tired some naturopathic stuff. How do you deal with it? I’m terrifed!!

    Casey

  4. Casey Hall said

    Oh, and I’ve also done 5 remicade infusions….nothing has worked. Where are you doing your surgery?

  5. stephlws said

    Hey Casey,

    I’m having my surgery done at the University of Chicago Hospital. There are fantastic! I’m really happy with the staff and doctors. Very knowledgable but also great bedside manner! Yeah, Remicade was a total bummer for me too, along with all the other meds. I think about everything that I’ve endured thus far. I remember all of the pain I went through. I think about how much UC has taken over my life. So when I think about surgery, I think of it as me taking control of my life again. Kudos to you for making the decision! You, Casey, have decided to take control of your life and your health. You’re not going to have to think about where the bathroom is every time you go out. You won’t have to tell your friends you can’t go out anymore. You won’t spend your nights huddled in the bathroom hoping the pain will go away. You are taking the step to making your life all that you know it can be. Good luck and please keep me updated on your status! I’m always willing to talk!

    Take care,

    Stephanie

  6. mark said

    Stephanie,

    I knew before my surgery also that my decision was right, I could just feel it – although I was nervous about the actual surgery I had made 100% peace with the decision. Almost like an overwhelming sense of calm. That calm was deserved since it took a long time and lots of pain to make that decision.

    Keep us posted, and we’ll be thinking of you come surgery day. Will someone be staying with you the first days in the hospital?

  7. tammy said

    Steph and Mark,
    Im going Sept 4th to find out when I go for my surgery. I cant believe reading these stories how much it all sounds the same it weird. My GI doctor has been trying to save me the agony of going thru with surgery but I think after 5years and only in remission for 9months. I hate to say it too but I think I need surgery..
    I want to thank you two for reading your stories and yes feeling like you have a whole other family.
    Thanks,
    tammy

  8. mark said

    Hey Stephanie,

    Hope you are recovering well, you are a few days out from your first surgery? How is your stoma? Did you name he/she yet?

    Mark

  9. Rob said

    Hi Stephanie, I’m wishing you all the best and a fast recovery. Being in pain all the time isn’t the way we are suppose to live. Seems you have a great support team that loves you a lot. So do I and this helped me so much.

    Robby

  10. mark said

    You look fantastic! Sounds like you had a good long journey butno you are getting back to some routine of normalcy. I always wondered what hte red bands were on other stomas, I didn’t have one so I never knew.

    we are so glad you are back in good shape and spirits. keep healing well,

    Mark

  11. stephlws said

    Thanks Mark! I’m feeling good! I haven’t named my stoma anything other than “The Temporary Bane of my Belly” lol. But things are great! Hope you are well!

  12. Cindy said

    wow what a great story, I’ll have to publish mine on here too!! your is a lot like mine. I just wish I could have had such clean incisions!

  13. mark said

    Hi Cindy,

    good to hear from you, do let u know if you’d ever like to share your story, we’d be happy to post it for you. My email is mdhilton@gmail.com

    Mark

  14. Cindy said

    Well I’m getting ready to go in for surgery number 2 now, they’re gonna construct the j pouch and then I have to wait 3 months or so and then it’s takedown time! My surgery is on Dec 2nd, getting nervous! they’re also going to remove the portion of colon they left behind from the last surgery because it still has severe UC in it. I will definitely share my story with you guys!

  15. mark said

    Hi Cindy,

    Good luck with a health recovery for number two, that will be a journey to recovery but you’ll really get to enjoying living life not be sick. We would love to share your story at some point, feel free to write us at mdhilton@gmail.com and we’ll get your story posted for others to identify with and learn from!

    keep us posted,
    Mark

  16. danni said

    Hi Stephanie!
    I had severe UC for three years, and I just had my first surgery in July. My doctors in Florida (where I used to live), were going to reconnect my small intestine to my rectum, sans J pouch. What THEY didn’t tell me was that I’d be going to the bathroom 15 times a day for the rest of my life. My surgeons now in New York say that the J pouch will work and I’m hopefully getting my surgery in January. I should be better by the time I’m fifteen!
    Your story here helped me a lot, thank you and good luck!

  17. Socorro said

    Thanks so much for all the details of your difficult condition, it really helps to learn and know what to expect.

  18. Jason Petterson said

    Stphanie,
    I enjoyed reading your post so much. My GF is going thru the process of having this bag for life. She has FAP, a gene disorder that causes colon cancer. She has almost a month left before she will lose her colon for life, hole in her behind is going to be sewed up and everything. She has been real quiet lately which I can understand. Noone can understand what goes thru someones head in this situation. She is 31, i am 30. I know it will be tough when she arrives home from the hospital with recovery. But I know the hardest part is the mental part. She is not going to want to be touched no matter how much I would tell her im not bothered and I avoid the sac. Let me know how intimacy works out for you now that you are past the initial stage of having the bag. I love my GF to death and hate to see her spiral downward

  19. Lee Ann P said

    Can you contact me ? I had the same survey it will be 4 years

    Lee Ann

  20. Sarah said

    Hi Stephanie,
    Thanks for having the courage to post about your story online. I have recently had similar surgery (but with a midline incision and no tubing) to treat Crohn’s disease. I only found out recently that I had it when it suddenly flared up. I was put on meds which I was allergic to and slowly got sicker to the point of needing two blood transfusions (haemoglobin of 6.5,, almost the same as you!) but finally I did get the right care and things moved pretty swiftly with my Drs recommending surgery the day before I had it. I haven’t had to have any of my colon removed thankfully, even though it’s messed up Drs are optimistic it can heal with rest and drugs.

    I can relate to all the things you have said about hospital, and about family. Thankfully I have been lucky so far with no real complications and things are going smoothly. I’ve had many people supporting me through prayer and in practical ways and it makes you realise what is truly valuable in life. If you don’t already, I would encourage you to pray and seek God because he has been such a huge source of comfort to me during my journey so far and provides me with help and strength to get through those difficult moments. And of course family and friends are physical representations of his love and care.

    I am interested to hear how you go with the reversal process (and the dreaded enema). I’m not sure when mine will be which is frustrating but with all things we take it one day at a time. Wish you all the best for this year and continued improvements in health

    Sarah

  21. Mia Lopez said

    Stephanie,

    J -Pouch surgey is NOT a cure. Reject CCFA -they are losers with an agenda and spew misinformation. Honest researchers admit this surgery is a *management only and saves lives.

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