Melina 
Melina's Story
Melina, Age 17
For the first thirteen years of my life I was the healthiest kid I knew. And then the health problems began. In January of 1998 I experienced abdominal pain and up to 30 bloody stools a day. I was rapidly losing weight and was not able to eat anything due to the immense pain. I thought I was dying, but I didn't tell anybody. Why? Well, not even I know the answer to that; all I know is that I was scared. Very, very scared.
After about two weeks of not saying anything, things got worse. I thought this was a good time as any to tell my parents the pain I had been enduring. My father didn't think much of it and took me to the Family Doctor the next day. After many blood, urine, and stool tests, my GP concluded that I had Salmonella Poisoning and treated me accordingly, for about a week.
As things got continually worse I went back to my GP for more tests. He did not seem too concerned about it, but also did not know what the problem was. He put me on a clear to soft diet and sent me on my way. I decided to try this for a while in hopes of it working. No such luck.
After about a week on this diet things were still not getting any better and my parents brought up the idea of taking me to the hospital. Just hearing the word 'hospital' scared me tremendously. I had never been in the hospital or had my blood taken or even had an x-ray. I was terrified. But I soon gave in. I had to, I was a mess.
My first hospital stay was in a local hospital and lasted 10 days. I was not allowed to eat and was getting medications intravenously. I had no idea what was going on; it was all so overwhelming and happened so fast . I had many tests done, and the verdict: Ulcerative Colitis. I had no idea what this meant and I honestly thought it would go away in a few weeks with the proper medication. My GI doctor didn't explain much to me at all. He put me on high doses of medications and told me to eat whatever I wanted.
We soon realized that this GI doctor was not for me. We were still very confused and despite all the medications I was on, my health continued to deteriorate. That's when my parents decided to take me to The Hospital for Sick Children in Toronto.
I was quickly admitted on the GI floor and I was NPO with TPN giving me the nutrition that I so desperately needed. Many more tests (such as ultrasounds, CT scans, X-Rays, Barium swallows, colonoscopies, stool tests, blood tests, etc.) were performed and I was told that I had severe UC and surgery would inevitably be needed. I think at this point I was hit with the realization that I had to deal with a life-long health problem, and at 13.
I, along with my parents, had to make a very important decision at this point. Try the harsh drugs, or opt for surgery. At that point in my course with this disease, I was not emotionally prepared for surgery and we decided to fight the UC with various medications.
That was the beginning of my battle with UC. I didn't want to let it defeat me, I didn't want to be helpless over my own body, so we began the course of medications. At my ultimate low point I was taking 26 pills each day. My very first GI had started me on very high doses of Prednisone, which we didn't know at the time, but turned out to be a very harsh drug with many side effects. One cannot just stop this medication, but must taper off it. Unfortunately, once I stared to taper, my UC would shoot into a flare, and my flares were really bad and always landed me in the hospital.
For the 10 months I had UC, I had about 7 flares and I had to stay in the hospital for about 3 weeks each visit. My body would not let me taper off the Prednisone; I was dependent on it to stay in remission. Because of the side effects of this drug, my face became very roundedlike I had just gotten my wisdom teeth out. My skin began breaking in various places and I had gotten stretch marks. I can only imagine what it did to me internally.
After trying many different harsh drugs and living with their awful side effects I was still ending up in the hospital with violent flares and weight/blood loss. At this point in my life I was starting a new high school and I just wanted to get on with my life and not constantly think about feeling sick and how many times Iwent to the bathroom in one day. It took a lot of thinking and a lot of courage to finally make the decision to have my large intestine surgically removed. I felt like I lost the battle of my health. I felt helpless and weak over my own body. I felt defeated. But I still believe that was the best decision of my life.
On October 20,1998 after the longest and most grueling 10 months of my life, I had the surgery to remove my large intestine and thus get rid of the UC. The surgery left me with an opening in my abdominal wall and a piece of my small intesting sticking out ((called an ostomy)). I no longer had 'normal' bowel movementsas I defecatated into an external bag and emptied that outseveral times a day. This took some getting used to, but by the time I went home (about 3 weeks later) I was getting the hang of it and I didn't mind it at all.
Over the next 21 months, I was gaining my strength and my health back. But most importantly I got my life back. I was able to attend school regularly, go out with friends, and even play contact sports. I was on top of the world and I was ever so grateful that I had my health again. Things were going extremely well and I then decided to have the surgery to construct an internal pouch (called a J-Pouch) so I could eventually have my ostomy closed and I would go to the bathroom 'normally'.
After many consultations with my surgeon and many questions & answers, I was ready for the surgery, which was performed on July 10, 2000. After nine and a half grueling hours in the operating room, the surgery was over. It took so long because of 1) my body had formed a lot of scar tissue from my previous surgery and my surgeon had to clean all this out first before he could begin constructing the pouch; and 2) because the small intestine was not meant to reach the rectum, my surgeon had to frame shift all my organs further down in my abdominal cavity.
When I woke up from this surgery I was in a daze. I still remember bits and pieces from that night, but I felt no pain. The next few days were the most painful and challenging days of my life. I had so many little complications from the surgery and that caused me to stay in the hospital for a month. I lost a lot of weight and was in so much pain, even when I went home. But after a month or so I was attending school and was almost back to normal, although very weak.
After a few months I went back to my surgeon for him to evaluate if I was ready for thelast step of the surgery, which was to have my ostomy closed so I could go to the bathroom via the 'normal' route. Unfortunately, my doctor found yet another complication. I had a ring of scar tissue where my rectum and J-Pouch connected, and this had to be fixed before any surgery was going to be done. So he decided to do weekly dilatations (stretching) of this scar tissue in hopes of it staying that way. After about two months of going to the hospital every week and being put to sleep for the painful dilatations, my surgeon decided that surgery to correct this was the best option.
On December 8, 2000, I underwent a "V-Y Anoplasty" surgery to cut the right side of this ring of scar tissue. He said this should work, but once again I managed to beat the odds. I still needed another surgery to correct the left side of the ring of scar tissue. The second V-Y Anoplasty surgery was performed on February 12, 2001. These operations were much smaller in comparison to my first two, but they were both very painful and I could not sit comfortably in a chair for a week after each.
Thankfully the second operation was a complete success and I was able to have my ostomy closed. This is what I had been waiting for, for over three years and it was finally going to come true. I was on an emotional high and I couldn't believe my years of suffering and surgeries and hospital visitswere all coming to an end. On April 2, 2001 (a week before my 17th birthday) I had my final surgery to have my ostomy closed and my J-Pouch connected.
Even though I enjoyed life with my ostomy and I loved having it, the J-Pouch provided some normalcy and a different way of living that the ostomy didn't provide. It was a change in my life that I was ready for, and I'm glad I gave it a chance. I am now able to do anything I want, and looking back, it's so hard to believe all I went through so I could have my health back. I now value life and health more than ever.
Throughout my ordeal with my disease I found that keeping a positive outlook on life helped me tremendously. Of course, having amazing doctors, nursing staff, and supportive family and friends helped me enormously with getting through this hard time and with coping. But a person's attitude had a lot to do with the way they deal with things, and being positive got me through the hardest times.
In a way, I'm glad this chapter of my life happened. It has molded me into the person that I am today. I don't necessarily look at it as a bad experience, but an experience I am happy to say I overcame. Life is very delicate and is often unappreciated until something unfortunate happens. For me, I think this was my unfortunate ordeal and I now appreciate life for all it has to offer.
In the future, my dream is to become a GI/Nutrition doctor and/or a surgeon. This is what I have a passion for and if I work hard enough I know I can achieve my goals. I hope some day to help people suffering from IBD, the same way my doctors helped me. Hopefully with more research, there will be a cure so people will no longer have to suffer. If I can help at least one person with my experience, then it was all worth it.
*smile*.
Written by Melina, April 2001