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Update

Updated:
Jan 26, 2008

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Gabrielle's Story

Gabrielle, Age 16

Really, my story begins in a time when I didn't know any better. Ever since I can remember I've been having bloody bowel movements. The first time it happened I remember being quit scared, but within a few days it went away and I thought nothing of it. Every time it happened after that I never thought it was strange or anything. Until I was fifteen. At some point towards the end of my freshman year in high school I got really sick. The bleeding kept getting worse and worse and I was getting so tired I was falling asleep at the beginning of each class and sleeping all the way through it. Finally I was making 15+ tips to the bathroom a day and I told my mom something was wrong. At first my mom just took me to the clinic to see my family physician. She diagnosed me with an internal hemorrhoid and told me to come back in six months if the bleeding hadn't stopped! Lucky for me I didn't listen to her. We went to the first GI doctor who would accept me (I'm very short and petite for my age so no adult doctors would). Right after she saw me I was admitted to Children's Hospital of Milwaukee for the first time. After a nice introductory endoscopy and colonoscopy the first of many diagnoses was made: I had UC. After that I was ordered to be NPO and to start Prednisone. They put in my first PICC line and I was started on TPN as well. A day or so later I was started on about five antibiotics and diagnosed with a UTI adding one more to the regimen. Then they started me on Remicaid, 5mg every 8 weeks was the long term dosing. Not long after that I contracted my first bout of C.Diff. Four weeks later I was sent home with my PICC still in and ordered to do the TPN at home.

I really though things were getting better until less than a month later the pain and blood came back with a vengeance. Again I was sent to CHM and they upped my prednisone. Not long after I got C.Diff again and they started talking about surgery. I was assured it would be a solution they wouldn't be using for a long time seeing as I didn't meet the criteria. They upped my Remicaid to 10 mg every 8 weeks. Then every 6 weeks. Then every 4 weeks was finally what they agreed on. Another PICC was put in and everything was started over. Again, four weeks go by and I am released.

The next morning I started vomiting severely. I went to my GI and was told I had gastritis. When the vomiting didn't stop I went back again. And again. And again. AND AGAIN. I was told the same thing each time until my mom (who works in the OR at a local hospital) convinced the doctor to order a test for my gallbladder. It was found that my gallbladder was not emptying right and causing bile to come back up and make me vomit. The next day I had my first of many surgeries: my gallbladder was removed. The simple one night procedure was turned into five weeks due to another flare-up and yet another bout of C.Diff.

With the Remicaid coming every four weeks combined with the fact that my veins were already bad led to my next surgery. I had a MediPort inserted into my chest so they always had a place to access and IV. In December of that year my illness began to progress and I started to get horrible abscesses. This is when my diagnose changed to Crohns. Finally one got so out of hand they had to surgically intervene once again and drain it. When I woke up from that surgery I had a drain stitched into place which would have to stay in for at least three months. At this point I was still on the Remicaid, Prednisone (they never did successfully taper me off of it), 6-MP (which by this point was making my hair fall out), and Previcid. Because of all the immunosuppressants I was taking, my MediPort never healed right and they had to go back in to suture it into place with permanent suture.

Finally in April of 2007 my mom rushed me to the ER in fear that my appendix had burst. As soon as I got there they gave me morphine and told me I was having a mild flare-up and they would keep me overnight to dehydrate me. I never left with my colon. One day turned into a week and I was told my flare-up was getting better but I had C.Diff again. A week turned into two, then three, then four and the C. Diff would not go away. Finally in the beginning of May my white count shot up, my red count dropped, and I got a terrible fever. At first they thought I had a rupture somewhere and was bleeding internally, but after two blood transfusions and more tests that was ruled out. They never did find out where I was losing blood from either. On May 7th my surgeon came to me and told me they needed to promptly remove my colon (this came after three more colonoscopies and another endoscopy) because they were afraid the C.Diff was beginning to spread to my blood accounting for the elevated white count. So on May 9 (exactly one year, to the day, after I was diagnosed) they gave me Mini, my ileostomy.

Sadly I would have one more hurdle before I could leave the hospital and try to start my life over. Since the day I had been admitted they were giving me high doses of pain killers every four hours and my body wasn't ready to stop. After three days of terror when it was stopped I finally was ready to leave. Six and a half weeks is a very long time in a hospital.

My life with Mini started off rather rocky but I am used to her now. Although I am used to her, I have to say I hate her. I hate not wearing my old clothes and bikinis and I hate having to go around her schedule. I would seriously like to get a J-Pouch and I feel that if I am a candidate I will definitely do it after I graduate. So until then I guess I have to pick up where I left off and redo my sophomore year and get back into the swing of things. I do hope that things will get better. Now almost three months after surgery things are ok again health-wise. I am a bit worried though because one of my abscesses has returned. I am anxious to see what the future will bring but whatever it is I know I can get through it with all the support I have.

Thank you for letting me share my story, it has helped so much to be able to finally tell people what happened. Oh, by the way I was finally correctly diagnosed with Crohns Colitis.