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Update

Updated:
Jan 26, 2008

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Annamaria's Story

Annamaria, Age 18

When I was 9 years old I was diagnosed with a type of inflammatory bowel disease known as UC. I first had symptoms of UC when my mom had gone up north for a funeral (she had left me with my grandparents). While my mom was away I started to have a lot of abdominal pain and then one night I went to the bathroom and there was bloody diarrhea along with mucus and blood clots.

Well me being a little girl at that time I was very freaked out and I went in and got my grandma. She then came and looked and after she saw it she immediately called my mom. This scared my mom and after the funeral she flew home and took me to my pediatrician. Well my pediatrician automatically sent me to a GI who decided to do a colonoscopy. Well after getting sick from the GoLytely the test revealed that I had UC.

This started the long process of trying to get me in remission. Well after a while of having no success this GI decided the only thing that would help was surgery. At this time I was only 10 years old and decided I wanted to get a second opinion, so that's what I did. I went to a new GI who immediately started me on Predinisone, Asacol, 6MP, Prevacid, etc. (the usual list). With this course of treatment this doctor put me in remission for 4 years.

Four years passed and I was on my way home from seeing my sister graduate from Army Basic Training. Well I came home on a Sunday and Monday I went to school, however, the next day I wasn't feeling good so I stayed home, and the day after that I was feeling even worse. Dreading that I had come down with pneumonia once again I went to my pediatrician who ran the usual blood test and came back with that I needed a blood transfusion. Just being more comfortable I traveled to where my GI was who admitted me to the hospital and gave me a blood transfusion. The thing was that I had no symptoms of it being my UC so finally after 2 months in the hospital and every other day blood transfusions they did a colonoscopy and found out that there was no other option other than surgery. However, by this time I was so weak that they decided to try and get me stronger since they now knew the problem. They tried for another month, except instead of getting stronger I became weaker, so they decided to do the surgery the day after Thanksgiving, which means instead of a turkey feast for Thanksgiving I got a GoLytely feast.

Well they did the surgery and everything went well until 6 days later when I woke up in excruciating pain. This prompted them to do more test and they discovered a small bowel obstruction, so I was rushed back into surgery. Well while in surgery my small bowel ruptured and they had to do a resection of 13 feet. Since the small bowel ruptured I went septic. The only thing I remember is my surgeon canceling all of his other surgeries for the rest of the night and sitting by my bedside crying and rubbing my hand. I asked him what was wrong and he said Anna you are very sick and I said I know and I said but will I live. His response was that I had less than 24 hours. Knowing that I would want to be with my family for the last few hours he put me in an isolation room on the regular floor instead of in the ICU. This didn't last long though because my nurse came in to check on me and she started to act really weird. The next thing I remember was I was beginning rushed down the hall to the ICU because my blood pressure was 37/12 and my pulse was 195.

Well I spent 7 days in the ICU. My mom says that during this time I had a third surgery because the drains that they had sewn to my rectum had been sucked up into my body and they had to retrieve them before they caused more complications. After all of this had happened I ended up contracting every imaginable infection including C-Diff. During this entire 4 month period I was living off of painkillers and TPN. Well I ended somehow defying all odds and living. So I had an ileostomy for 7 more months, totaling 9 months with an ileostomy.

Let's fast-forward now. Now I am 16 and I was getting ready to have my reversal surgery. Once again everything had gone fine, but 36 hours later I woke up in excruciating pain again. This time though I had a stitch break loose on my artery causing an arterial bleed. This bleed made me loose 7 of 8 units of blood and end up in the ICU again. Well this was just another obstacle that had threatened my life, but I overcame it. Once again I was put on a lot of painkillers and TPN just so that I would not become malnourished. However, this was not the end of this hospital stay. I ended up with a fistula at the site of my stoma. This complication ended making me have to stay in the hospital for 2 months. Well at long last I was about as pain free as I possibly ever could be. It lasted a glorious year with only mild pain and so I decided to go visit my sister for a month in Virginia on summer break.

While I was in Virginia I had a severe case of pouchitis and a small bowel obstruction. Well the doctors up there being that they didn't know my case got me strong enough to come back down to Florida so that I could see my own doctor. I ended up spending another week in the hospital down here. After this minor setback I was fine for about another 2 months. However, in 2 months I had started to have severe abdominal pain and I had not gone to the bathroom for approximately 36 hours, which was very strange, so I went and saw my surgeon who admitted me. After a week and having a code blue called on me they did a flexible sigmoidoscopy which came back clean, however, they also did an Upper GI with follow through that revealed an obstruction. Well they tried there hardest to release the obstruction without surgery over the weekend, but it didn't work. So I went into surgery on Monday and I came out with a central line and TPN feed. After all this it took me another month to heal, which meant another month in the hospital.

Well after this surgery I proceeded to get stronger and stronger. Finally at long last I was about as healthy as I will ever be. Well after all these surgeries I was left with two holes in my outward appearance on my stomach. So finally after a few months of recovery from the last surgery my surgeon decided that he would do surgery and correct this problem. Finally, a surgery I was looking forward to. I am now fully recovered and after 2 and a half years of living without a belly button I finally have mine back.

Well after all this I just wanted people to know that just because we have had difficult lives does not mean we cannot live what we do have to the fullest. I finally returned to school after missing a year and a half and now instead of being 18 and getting ready for graduation I am 18 and getting ready for my senior year. Everything that I have been through finally made me decide that instead of becoming a general pediatrician when I am older I am going to be a pediatric GI so that I can help kids that are going through the same thing as I did.

Thank you for letting me share my story and I can only hope that it helped some other person living with the same condition realize that they are not alone. I would also like to thank everyone on this site for contributing there stories to help me realize that I am not the only person that has had problems in dealing with this disease.

Recently I had another bout of pouchitis, however this time it was not as serious and they were able to treat me as an outpatient. I continue to have minor setbacks and complications. However, I have found many support sites on the computer that help me through these problems. As well as this I have a good medical team that helps me as much as possible.

I also have some good news. I have decided to go to Florida International University for my pre-med courses. It is a very nice school and even though it is away from my home it is not far. The other good news is that it is in the city were my hospitals are which means I know a bunch of people in the city so I will still have a good support system.

Updated 6/25/2006