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Nicole Dodds' Personal CD-UC Story
Nicole Dodds, 12, of London tells her story about being diagnosed with Crohn's Disease at the age of 8, then further developing Ulcerative Colitis, which eventually lead to an ileostomy. • Article added January 25, 2004
Crohn’s Disease and Ulcerative Colitis are diseases that affect the colon and intestines in the human body, although Crohn's can be diagnosed in your mouth all the way to your anus. They are illnesses that are usually diagnosed at an early age, mainly teens or early twenties. Crohn’s Disease can go through many periods of remission and flare-ups over time. So far, no one has found a cure and the cause of these diseases is still unknown. For more information, photos and endoscopic videos, read LDOA's articles: Crohn’s Disease and Ulcerative Colitis.
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Hello, my name is Nicole Danielle Dodds and I'm 12 years old. I live in London, Ontario, and I have lived here since I was born on October 4, 1991. But enough about me, let’s talk more about me! I was diagnosed with Crohn’s Disease when I was 8 years old. I’ll tell you my story step by step. |
When I was in Grade 3, sometimes if I sneezed, coughed or even moved too quickly, I’d poop my pants. This happened at school and at home. I thought my parents would get mad at me if I told them I was pooping my pants every day, so I hid them in my bed- room. One day, my mom, Debra Dodds, saw the poop stain in my underwear and asked me what it was and I told her I couldn’t make it to the bathroom in time. Naturally, my parents were worried. They took me to my family doctor, Dr. Bruckschwaiger, and he referred me to Dr. Hammerburg, a doctor who specializes in stomach problems, but Dr. Hammerburg said he couldn’t help me and referred me to Dr. John Howard, a gastroenterologist.
June 27, 2000 was my first appointment with Dr. Howard. He told me he had no idea what was wrong with me. So he tried some tests, like one week without dairy products to see if I was allergic to dairy products, which I wasn’t. So he booked me for a
colonoscopy to take "a look around".
July 18, 2000 was the day I was diagnosed with Crohn’s Disease. I was only 8 years old at the time. I had been getting tired very easily and my energy level was quite low when I started taking the medication. I was prescribed Prednisone and Pentasa and that night, by 10:00, I was vomiting and in the bathroom every 10 minutes with a bowel movement or false urge to go. I was up all night and got about one hour of sleep. My mistake was eating eight spicy chicken wings with BBQ sauce on them for dinner. The next day I was still vomiting until noon. That was when we called the doctor’s office and followed his instructions to discontinue this medication until my next appointment. The next day I had a mini carrot muffin in the morning. For dinner that Saturday, I had 1½ -2 pieces of pizza (thick cheese). On Sunday, I ate another mini carrot muffin for breakfast. In the afternoon, I developed cramps and was in the bathroom frequently for the next several hours.
At the beginning of September, I was complaining of pain in my legs. I was also limping and couldn’t fall asleep because of the pain. A few days later, my legs started giving out on me. I would walk up or down a flight of stairs and would fall or trip because my legs gave out all of a sudden.
By mid-September, my appetite was decreasing rapidly. On the 19th, I had an appointment with Dr. Howard. He told me I was allergic to the Pentasa medication and he wanted me to go on to a new drug called Imuran once a day. He also prescribed Emla cream for my bloodwork. He said it’s like freezing and for it to work I’d have to put it on my arm (the area where they take blood from) at least one hour prior to an appointment. The increase in Prednisone made the aches and pains in my legs gradually disappear.
The beginning of October brought me stomach pain, lower back pain and a fever. I usually got these pains after I came home from school, but I wanted to go to school and said I was well enough.
October 9th was the day we had Thanksgiving dinner at our house. I was happy and joyful, not realizing that that would be one of my most painful nights since I was diagnosed. When we all sat down for dinner, I only ate three or four bites because I didn’t feel like eating at all. So I laid down on the couch with a blanket over me. I had very bad lower back pain. Within minutes of lying down, I was in the bathroom vomiting dark green puke. At that point, we got ready and left for the hospital.
I saw Dr. Turkstra at London Health Sciences Centre's (LHSC) Children’s Emergency. I had stomach x-rays and bloodwork done. I was given Tylenol and was told I’d be admitted. Not even three months and they wanted me back! Dr. Turkstra said I had an allergic reaction to Imuran called Pancreatitis, a condition caused by the Imuran drug – about 1 in 20 people contract this from the drug. I got an I.V. hook-up, and the doctor said nothing to eat or drink until Dr. Howard saw me in the morning. So they want me back and starve me to death ... that made sense!
Dr. Warren Ball came down from CTU (Clinical Teaching Unit) to do the admission. I was taken to Room 7194, 7th Floor West, Tower 1 (private room with a phone, bathroom and shower stall).
Dr. Howard came to see me Tuesday morning. He felt very bad and repeatedly apologized for getting me sick in the hospital with Pancreatitis, but I said it was okay. He also said I would have to be in the hospital at least a few days with daily bloodwork. He started me on a clear fluid diet. My dad, Jeff Dodds, made me a deal that every time I got a needle without crying, he would give me $5.00. What 8 year old wouldn’t be thinking cha-ching?
In the afternoon, my mom gave me a shower and the nurse got me some nice red and white striped flannel pyjamas. About half an hour after I was all cleaned up and back in bed, three ladies arrived at my room. They were from the magazine, Today’s Parent, and they were doing an article on children in the hospital. My nurse had kindly advised them that I might be a good patient to take pictures of. I was quite excited about having my picture taken for a magazine. Don’t forget, what 8 year old wouldn’t want to be in a magazine? My dad had just left to pick up my sisters from school, and I asked the ladies if it was okay if they came back in half an hour to take some pictures of my sisters, Stephanie and Jessica, and I, which they did. They said if I was chosen for the article, I would be notified. Unfortunately, I was never notified and that meant that they didn't want me for the article, which was fine but sort of a let-down.
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| This isn't a picture taken by the ladies from the magazine, but it is a nice time to introduce you to my sisters. Stephanie, on the left, is my older sister who is 15 years old and in Grade 10. We are three years apart. She's very smart and athletic. Stephanie is like my right hand, always helping me when I'm in trouble or when I'm having a really "poopy day". Jessica, on the right, is my little sister who is eight years old and in Grade 3. We are four years apart. She is very athletic and is good in every sport. Jessica is like my legs – she won't stop until she gets me down in our basement playing hockey with her! And, of course, that's me in the middle. This picture was taken on June 1, 2003, just a few weeks before my ileostomy surgery. You can see how swollen I was from the medication I was on. |
I was upgraded to a full fluid diet. If everything went well, I would go home the next day, and sure enough, I was discharged on Wednesday right after lunch. My parents took me home and on the way stopped at a restaurant of my choice, which just happened to be McDonalds.
A week later I was put on Methotrexate because my legs were always giving out. In case I had arthritis, this drug was supposed to help my legs get stronger so they wouldn't give out, but it didn't work at all.
About a month later, I developed a bad cold and sore throat and was prescribed Amoxicillin by my family doctor. Weeks later, I still had the cough and it wasn’t getting much better, so Dr. Howard prescribed a Pulmicort Turbuhaler. My legs ended up with major pain and gave out once in a while. Dr. Howard prescribed Vioxx to relieve the pain.
I still had the cough in January of 2001, so I was told to stop taking the Methotrexate in case it was causing a lung problem. Dr. Howard ordered a chest x-ray and it showed some focal disease at the left lung base – possibly pneumonia. Once that was verified, he put me on a different drug called Sulfasalazine as well as folic acid three times a week. And I was STILL on Prednisone!!!!
Early February, I started getting headaches every now and then, and then they became more frequent. My mother called Dr. Howard’s office to see if it was a side effect of the Sulfasalazine, and he said to cut my dose in half. My legs were still giving out and always in pain, so we tried Vioxx again. Sometimes it would help and sometimes it wouldn’t. But I was still getting quite a few headaches even though the Sulfasalazine pills had been cut in half. Otherwise, I was doing pretty good. Dr. Howard changed the dosage to one pill twice a day. With this adjustment, the head- aches became less frequent. I finished taking Prednisone, since we kept reducing and increasing and reducing and so on.
Mid-April made me starve!!! My appetite had decreased quite a bit over the last several weeks, and I lost some weight. For example, I would eat two or three bites and say I was full. I was having cramps, as well. Dr. Howard told us to stop the Sulfasalazine for two days and if there was no change, start taking it again, as well as starting Prednisone again. Gradually, my appetite improved somewhat and I gained a few pounds back.
On May 1st, Dr. Howard suggested Salofalk three times a day.
September came and went without any problems but November brought me a flare-up with an appetite loss, diarrhea and cramps, nausea, and an upset stomach. Guess what? I was put back on Prednisone only this time Dr. Howard doubled my usual dosage.
The day after Christmas, I was having terrible back pain and stomach pain right under my rib cage and all across my abdo- men. The next day, my urine was pinkish-red. So my parents took me to see my family doctor and he confirmed blood in my urine; he sent the sample away to the lab, but the results showed that there was no infection. The blood found in my urine had lasted about 24-36 hours.
I was experiencing constant back pain and headaches daily, my legs were giving out on me anywhere from twice a day to twice a week, and I had no appetite whatsoever. I was tired all the time. New Year 2002 had arrived.
February came and brought me to the Emergency Room because the back pain was a lot worse than before. I gave them a urine sample, got a script for Vioxx again and was simply sent home.
Two weeks later, I had coloured urine again. Before my 8:00 a.m. appointment with Dr. Howard, my urine was a malt vinegar-brown colour. At Dr. Howard’s office, it was still the same. So I gave a sample to Dr. Howard to test, which showed positive for blood. I then did a clean catch for further tests, which showed nothing. I was told to see a kidney doctor, Dr. Matsell, who just happened to share the same office with Dr. Howard.
The first weekend in April, I had done a 24-hour clean catch in preparation for my appointment with Dr. Matsell. This time there was blood in my urine and it was also discoloured.
Early July, I started having 8-12 bloody bowel movements a day. Dr. Howard increased the Prednisone again, which made me get a lot better health-wise.
The day before Halloween, Dr. Howard thought of a new drug called Remicade or "The Miracle Drug" but, before taking this drug, I had to have some tests done. The tests that would be done were a chest x-ray and a T.B. test. If I passed them both, we could go further with the drug. Remicade is a 4-hour infusion. Dr. Howard called the Paediatric Medical Day Unit (PMDU) at LHSC's Children’s Hospital and asked if it would be alright if they gave me the infusion, which it was. Get this, it is very expensive – $2,540.00 to be exact. Hope you have a health plan!!
The Remicade infusion started at 12:15 p.m. on Friday, November 8, 2002. I did very well taking in the infusion without any reaction and my blood pressure was taken every half an hour. My GREAT parents bought me a Tim Hortons Black Forest Ham and Swiss sandwich and a donut! The infusion finished at about 2:15 p.m. In the meantime, I made a Christmas wreath and watched a movie. Then I had to get a saline intravenous solution that ran through my blood system for about half an hour. Then another half an hour to make sure I didn’t show any signs that I might be allergic or show abnormal reactions to the drug.
Within 2 days, I was feeling great!!! No pain, no nausea, no bloody stools!!! I started eating quite well. I felt great and didn't look like a ghost. I had tons of energy! I actually went out with my sister, Jessica, and played road hockey for about an hour. I did that several times. I had so much energy, I was even talking to my parents about trying out for the Grade 5-6 basketball team. And I did, and I made it! The change was like night and day!
December 3rd, was my second infusion of Remicade and started at 9:45 a.m., out by 1:00 p.m. and back at school.
Sometimes I would wake up in the middle of the night and have to go to the bathroom and after I went, I wouldn’t be able to get back to sleep, or else I'd wake up from stomach pain and back pain.
Dr. Howard increased my Prednisone dosage to 60 mg for three days, then reduced it by one pill every three days. After all that, if there wasn't a great improvement, he would schedule a colono- scopy for New Year’s Eve. By the looks of it, since we had tried practically all the drugs I could take, it looked like the only option left for me was surgery.
I went to LHSC South Street Campus for my colonoscopy. My disease looked like Ulcerative Colitis instead of Crohn’s Disease. Dr. Howard explained to my parents and I that it can switch from one to the other but, if it switches from Crohn’s to Ulcerative, it can’t switch back. Dr. Howard said that a large portion of my bowel was infected by the disease.
It seemed as if January, February and the beginning of March 2003 just flew by without me noticing. Until the SARS scare came upon us. SARS stands for Severe Acute Respiratory Syndrome.
A week into June, I woke up at about 3:00 a.m. with severe lower back pain, mostly on the right side, stomach pain and vomiting. I had a burning pain when I tried to urinate. And more bloody bowel movements and lots of diarrhea. We then went to emerg at about 5:30 a.m. My parents were wondering if I might have been passing a kidney stone. They started an I.V. line in emerg so I could receive painkillers and it helped. After Dr. Ball, the doctor on duty in emerg, talked to us, I was released and sent home.
On June 9th at 10:45 p.m., I went into my parent's bedroom in tears with severe back and stomach pain. Again I started vomiting but this time it was a different colour – it was like a coffee grounds kind of substance that was coming up and, since I don’t drink coffee, my parents didn’t have to think twice about taking me to the hospital! When we got there, Dr. Ball was the emerg doctor on duty again. I was given morphine for my pain and agony and then FINALLY slept for a bit. When I woke up, I saw my mom sleeping in the bed beside me with a blanket covering her.
Dr. Howard was paged in the morning and tests were ordered – chest x-ray, lower abdomen and ultrasound. Apparently, nothing showed up in any of the tests or x-rays, so they decided to give me some food and see how I’d react. What do you think happened? I’ll give you a hint: it wouldn’t be the first time that month! Yep, you guessed it – I puked again, so the decision was made to admit me. That night at around 11:00 p.m., I went up to Room 7170, 7th Floor North, Tower 2. I was allowed to have morphine for the pain because my dad is allergic to Demerol and they didn’t want to take any chances. I was put on Pantolac (Pantoprazole) for my tummy (ulcer medication). I was in the hospital for four days until June 13th. I appeared to be improving, so I was released. I was trying so hard to get out of there because we had a Camaro show in Niagara Falls and we had to leave by noon on the 13th to make it there on time. I didn’t want my dad to miss it either because he LOVES Camaros, and I wanted him to win a trophy for our car.
On the way to Niagara Falls, I puked a few times. I slowly got worse and barely ate or drank anything and vomited all weekend. I even vomited up the meds. On Saturday, my parents went to a banquet in the hotel meeting room. I was in the hotel room with my older sister, Stephanie. At about 8:30 p.m., I couldn’t stand the pain in my lower back and asked Stephanie to come with me to get mom and dad. I couldn’t sit, sleep or move any way to ease the pain, that’s how bad it was. Like giving birth pain. So my sister went in the meeting room and got our parents while I waited outside the banquet room door. We went back up to the hotel room and my dad tried to relieve some of the pain by rubbing my back, but it didn’t help at all because the pain was just too bad to handle. My dad told me that I couldn't go on like this for the rest of the weekend, and we might have to go to Toronto because the doctors in London weren't fixing whatever was wrong with me. I knew they were doing the best they could though. Somehow I managed to get through the weekend.
On Monday, my mom called Dr. Howard’s office and left a message explaining my weekend vacation. He returned the call at about 1:00 p.m. and admitted me back in the hospital. Now I was in Room 7167, 7th Floor North, Tower 2. This time, instead of the private room I had had days earlier, I now had a semi-private room. The other bed was empty when I was admitted but it was filled within days by a 14 year old girl named Amy. She had skipped school and was riding around in the back of a pickup truck with friends. The kid driving the pickup ran a red light, was hit by another vehicle, and Amy and all of her friends in the back of the pickup went flying. She suffered a fractured pelvis.
At 7:30 p.m., Dr. Howard came to see me and ordered some meds and started the usual I.V. He said he was going to scope me in the morning at 7:00 a.m. – both ends – through the mouth and up the bum.
The scope showed that I had Crohn's in my duodenum (the part that connects your stomach to your small bowel) and it cannot be removed or you will die without it. It also showed that I had developed Ulcerative Colitis all the way to my bum (colon and rectum). Dr. Howard said there was nothing more that could be done for me except surgery. I needed to have my entire colon (large intestine) removed. I was going to need what is called an ileostomy.
I decided to go ahead with the surgery because there was nothing else they could do for me. My colon would be removed but my rectum would be spared. I would have the ileostomy for the rest of my life. No going back! But if I wanted, I could have the ileostomy reversed into an ileoanal reservoir in time.
Sometimes treatment for Crohn's Disease and Ulcerative Colitis involves removing all or part of your intestines. When your intestines are removed, you need a new way for poop to leave your body, so the surgeon creates an opening in your abdomen for poop to pass through. Another word for poop is stool or feces. The surgery to create the new opening is called ostomy. The opening is called a stoma. Think of the stoma as an artificial anus for getting rid of your poop.
Ostomy surgery is performed when a medical condition is so severe that an ostomy offers a better alternative. The quality of life is usually much better for people with an ostomy, because their previous medical condition was so debilitating.
Different types of ostomy are performed depending on how much and what part of the intestines are removed. The most common ostomies are called colostomy, ileostomy and ileo- anal reservoir.
When the rectum is removed, the surgeon performs a colostomy to attach the colon to the stoma.
When just the colon is removed OR sometimes both the colon and rectum are removed, the surgeon performs an ileostomy to attach the bottom of the small intestine (called the ileum) to the stoma.
Since there is no muscle around the stoma, you aren't able to control when stool passes out of your body. So an odour-proof pouch is applied to your skin around the stoma and collects the stool and gas.
An ileoanal reservoir requires two surgical procedures and may be an alternative to a permanent ileostomy. In the first procedure, the colon is removed and a temporary ileostomy is performed. In the second procedure, the ileostomy is closed, and a section of the small intestine is used to create an internal pouch to hold stool. This pouch is attached to the anus and rectal muscles hold it in place and prevent stool from leaking. People who have this surgery are able to control their bowel movements and don't have to wear an external pouch because theirs is kind of built-in!
As a way of preparing me for the ileostomy surgery, Dr. Howard introduced me to Aric Rankin and Courtney Francouer, who have both had ostomy surgery. Aric and Courtney both had their surgery at about 16-17 years of age. They are now about 20-21 years old. They met each other in the hospital and are good friends. Aric already had his ileostomy reversed into an ileoanal reservoir and Courtney is scheduled for her ileoanal reservoir surgery on May 11, 2004. Aric and Courtney were very helpful to my parents and I. I also met a woman named Ruth Best, the ostomy nurse, who was pretty helpful, too.
Courtney and I in Dr. Howard's office.
My first appointment after surgery • July 16, 2003.
My surgeon’s name is Dr. Leslie Scott. Some of you might know her, but for those of you who don't, here’s a little description of her. First of all, she is a very down-to-earth type of person, she doesn’t rush through things, she takes her time and is always prepared.
Five days before surgery, I called my parents at home at 3:30 p.m. and told them that the nurse had kindly offered me a "get out of jail free card" for the next few hours. Because my surgery wasn't scheduled for another 5 days and I'd already been in the hospital so long, the nurse said I could go home if I wanted but I had to be back by 9:00 p.m. Well, I picked up that winning lottery ticket! When I got home, I had a Hersheys milkshake and my favourite vegetables with the curly noodles. I vomited within half an hour of eating but I made it back for 9:00 in time for my medication. I did the same thing on Sunday and Monday.
On Monday, Dr. Scott booked me in the O.R. (Operating Room) for July 3rd. After that, I went home again for a fantastic BBQ. I swear my parents are two of the best cooks! And again, I was back at the hospital for 9:00.
The next day, Dr. Scott told me that Dr. Howard was concerned about waiting that long for surgery. To make a long story short, Dr. Scott ended up having a 3-4 hour book-off in the O.R. and got me in for Thursday, June 26, 2003 – in three days! That worked out GREAT for me.
Two days before surgery, Dr. Scott wanted a PICC line inserted so that I could receive TPN – Total Parental Nutrition (a.k.a. "milk"). A PICC line is a special I.V. that was threaded into a major artery in my arm and down towards my heart so that I could be fed nourishment. If you tried to put TPN in a regular I.V., your vein would collapse because it can’t handle that much pressure. I was transported from LHSC Children’s Hospital to LHSC South Street Campus on a stretcher by Voyageur patient transfer. Well, what can I say it was ... it was ... PAINFUL. The tears were like water- falls coming from my eyes from so much pain, but I stuck out my arm because the way I figured it, this was going to be done whether I liked it or not. So I just gave them my arm and cried so hard it wasn’t funny. The freezing wasn’t freezing, that’s for sure, as I didn’t feel any difference. The radiology nurses said I was so brave compared to most adults, and they couldn’t believe that at my age (then 11) I could be that brave and even let them touch my arm. Well, on the way back to LHSC Children’s Hospital, I was laying down facing the back doors, and it made me very nauseas. I felt like I would puke at any moment.
The day of surgery was okay, not the best but it was okay. They confirmed that after surgery, I would be moved into a private room across the hall. At about lunch time, I had to get another I.V. just in case something happened during the operation and they needed an I.V. real quick.
When they called me down to the 2nd floor O.R., I was very calm and unafraid. I was ready for this and anxious to start spending my quality time in some place other than the bathroom. At 2:45 p.m., I was in the O.R. My mother took pictures of me while I was being rolled out of the hall and into the Operating Room. Going ... going ... gone. They asked me if I was ready, and I said yes. Then I was knocked out.
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Photo 1 Photo 2 Photo 3 Photo 4 Photo 5 Photo 6 Photo 7 |
Photo 1 • The Day After
Except for Photo 7, all of the pictures in this mini-album were taken the day after surgery, June 27, 2003. Here I am sitting up for the first time. It's around 8:00 or 9:00 in the morning and the nurse was taking blood through my I.V. for lab testing. I felt very groggy to say the least.
Photo 2 • Incentive Spirometer
This device I'm holding is called an Incentive Spirometer. As you can see, it's a small hand-held apparatus with a breathing tube and air chamber. It is used to measure your inspiratory volume. This means measuring how well you are filling your lungs with each breath. You normally take many deep breaths each hour and are usually not even aware of doing this. You take these deep breaths without thinking about it like when you sigh or yawn. But sometimes, your normal breathing pattern changes. You start taking shallow breaths in an effort to lessen pain after surgery. The Incentive Spirometer helps you return to normal breathing patterns even if you are having pain and can help prevent breathing problems such as pneumonia. In my case, the nurses made me use the Incentive Spirometer so that my lungs wouldn't get filled with fluid from not moving around very much, and it also tracked how much oxygen I was breathing to make sure I was getting enough air into my lungs.
Photo 3 • The Incision
It doesn't get more graphic than this! Here you see my incision and brand-new shiny red stoma! Right after surgery, stomas are usually swollen – mine was 2½ fingers wide! But over the next few months, it shrank to the size of a Loonie and now it's about the size of a quarter. I must say, I've got quite the scar to show after all of this!
Photo 4 • Walking and Dancing
Your first time standing always makes you wanna dance! Here I am giving it a whirl with my dad. While he's really just holding me up because I'm not quite strong enough to stand on my own, it looks like we're dancing! My dad looks amused but I was in some serious pain!
Photo 5 • My Dad
Here's my dad, Jeff Dodds, and I sitting in the lounge. I can't believe I made it that far down the hall.
Photo 6 • My Mom
And here I am with my mom, Debra Dodds, in the same lounge. Both parents are wearing green VISITOR stickers on their shirts. At the time I had my surgery, there was a SARS epidemic happening in parts of the world, and even though there had been no reports of SARS in London, Ontario, hospitals weren't taking any chances. Visitors were screened very carefully before being allowed into the patient areas of the hospital and a patient could only have two visitors at a time, which is why you don't see any pictures of my sisters on the day after surgery.
Photo 7 • Going Home
On July 4, 2003, the day before I was discharged, I gave this basket of treats to all of my doctors and nurses for taking care of me and making me feel so much better! |
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At 7:10 p.m., my parents were called into the Recovery Room. By now my dad had arrived at the hospital, and Dr. Scott told my parents that the surgery went very well. My ileostomy operation went from 3:00 p.m. to 6:00 p.m. When my mom and dad came in to Recovery, I already had a basin in front of me. I kept gagging and it felt like puke was going to come up and out all the time. I was in a restless anaesthetic sleep. My mom kept taking my basin away and I’d pull it back because I NEEDED it. I was in recovery for a total of four hours.
The next day, June 27th, my dad told his boss about my operation in a voice mail and that he wouldn't be at work that day. His boss called him back a little later and said that was definitely okay. But see, I didn’t know because I thought he had to work and so it was a wonderful, fantastic, exciting surprise!!!
The nurses had to wake me up sometimes in the morning for my Heparin shot. The Heparin would help prevent blood clots in case I wasn’t in the mood to move off my bed or wasn’t able to. I didn’t really like those needles very much because there was quite a shot of pain and bruising involved. So I hope you know what I thought to do after my first four shots – it was time to get moving since the nurses said that if I walked, I wouldn't need the needles! So I waited until my parents arrived so my dad could help me get out of my hospital bed. It was quite hard at first, but then I went for my midnight walks around my area/station because at night I couldn’t get to sleep but, in the morning, I slept like a log.
Two days after surgery, I was a bit more awake and was feeling okay with not as much pain but still on morphine and Tylenol 3. I was able to control my pain by hitting a button on a morphine pump and a dose of morphine would inject into my I.V. and then I'd drift off to sleep. Other than that, I was doing great, and I was very proud of myself for making it through surgery, if you know what I mean.
I was eating basically Popsicles and Jell-O and everything else I ordered on my plate. One time, I ate a raspberry Popsicle and a cherry Jell-O and that night I had red output in my pouch. My parents were worried, not realizing that I caused it by eating those red foods. Hint, hint – whatever turns your lips colour, will turn your poop that colour and it won’t be brown.
I was in the hospital just under one month. My first few appliances weren't the best but they worked for me. I couldn't really handle the poop smell because the morphine gave me a highly sensitive nose. But now I'm changing the appliances on my own most of the time and don't mind if I get a little poopy some days.
My sisters have never harrassed me or made disgusting comments about my ileostomy. They don't care that I have it at all. But I didn't tell any of my friends because they can be very cruel and, just because I'm different, I know they would try and make me feel bad about myself. I told my teacher and she doesn't mind at all. I felt awkward going back to school and feared that everyone would see something under my clothes like my flange and pouch. I worried about if my clip let go on my pouch – it hasn't happened – but that would be soooooo embarrassing. But I do live life to its fullest and enjoy it, too.
Last September I entered Grade 7 and tried out for the soccer team but didn't make it ... you’d wonder why three months after surgery. Then I tried out for the volleyball team in October and November and didn’t make that either, but I did end up being put on the competitive team instead. I am also on the select basketball team, and I am proud of myself for everything I have accomplished.
It is now January of 2004, and I am doing great since the surgery with no pain. And I am MEDICATION-FREE and very proud of it.
I enjoyed writing this and I hope you liked my "life-in-the-medical-area" story. Good Luck to you and your family because everyone has some- thing that makes them unique and one of mine is having Crohn's and Ulcerative Colitis. My parents tell me that going through all that I have experienced in my life so far has made me a stronger person, and it will make you stronger, too.
~ Nicole Dodds
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